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Was du redest ist Pappe!! What will really WORK is VRT combined with a positive attitude and nerves of steel. Religion spielt keine Rolle!! Rollo aus Wien |
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Sorry if my comment offended anyone. She asked about a source of inner peace. I never intended to suggest that medicine or therapy would not work for physical ailments. Take it for what its worth to you. It works for me. |
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Hi, everybody Rollo - sorry that I do not speak German. I wish I did.I am an American born in Russia. Whoever we are - we are all fighting this Dizzy Monster and we DO have nerves of steel. Tomorrow, I am going to drive myself for two doctors appointments - to a neurologist and to an ENT. Just a ten minutes drive - but it will be quite a challenge for me, because I have not been driving for more, than 8 months now. I am sure, that I can handle this short distance without putting my, or somebodyelse's life at risk. I need to be seen by the doctors for the RECORDS (not for a treatment, of course) - as FOLLOW -UP VISITS required by both Social Security and my insurance company for filing long-term disability claims. Long-term disability - it sounds awful. But it is an ONLY CHANCE for me to REST, RELAX and finally - TO RECOVER. Stay strong, be patient, do not "rush and push" your recovery. Very tired, but NOT DEFEATED, on the 28th months of my 5th bout of an inner ear disorder Anna
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Hi everyone Thanks for your help Lisa and I'm happy that you've found a way to cope. As for me...........still struggling but I think acceptance is the key. Once I've mastered that I think I'll be able to move forward. I'm seeing a new specialist tomorrow and I hope he'll be able to give me some peace of mind. |
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Hi, friends Lisa, Frances - I agree, that ACCEPTANCE and COPING are the key words for living with IT. Frances - good luck with the new specialist. Inform us what he said. Hugs, Anna |
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Hi all Anyone tried SSRI or st johns wort and had any luck with it? Have u experienced any side effects?? Thanks! dee |
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Anna - I am so sorry to hear about your long long battle with this. But it also worries me for selfish reasons! Have you had FIVE bouts with this..? I mean, you recovered and had many months of being fine, and then it hit again? Full force? Or was it less and less? Dear oh dear that makes me depressed to think it might happen to me too. After two months I have finally had two weeks of feeling almost normal. And have been thinking I am getting better once and for all. But what are the odds of it coming back? tim |
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Hi, everybody Tim – I completely understand your worries about IT possibly coming back. First of all – my case is not a NORMAL one. My experienced ENT doctor, who is quite familiar with the problem of dizziness and who has visited some balance clinics and training conferences on dizziness and vertigo, told me recently, that I AM ABSOLUTELY THE WORST CASE he had ever seen. So, you, Tim and the vast majority of the guys who are going through the first attack of labyrinthitis should look on statistics which show, that in 80-90% the FIRST attack will be the LAST one. These numbers, of course, are questionable and they vary from one source to another but the odds of getting IT again are not higher, than 20%. I have my own statistics which I am constantly correcting while listening to other people’s stories around me – my relatives, friends, friends of relatives, colleagues, etc. I have names of many real people who at ANY age got it once in their lives for several months (actually, from 4 to 15), recovered completely and never had IT back. They all admitted that IT was a NIGHTMARE and actually the worst experience in their lives and that they readily FORGOT about IT when everything was over. These people were very sincere and quite relaxed talking about their DIZZY NIGHTMARE with such a person like myself – they knew my situation. The fact is – the vast majority of those people RECOVERED completely. Tim – you are getting better and better which is the MOST important thing now. Do not think WHAT IF …. (the dizziness will never go away, or return back some day). As well you can allow yourself to think WHAT IF … (I will be hit by a car, I will get cancer….or any other BAD THOUGHT). Relax!!!!! TIME will do the job. About me – despite the apparently bad scenario of my illness – I achieved A LOT in my life. And it is not because I am so strong – not stronger, than any of you, guys. It is just because none of us, human beings, never-ever plan bad scenarios for our own future when we FEEL HEALTHY. This illness has given me dizzy-free years of remittances – completely dizzy free years!!! I have always taken full advantage of these happy years. Hugs, Anna |
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Hello everyone Well I visited the new consultant yesterday and he certainly lived up to my expectations. He knew exactly what he was talking about and I came home with renewed hope. I'm 6 months into this illness now and he promised me a complete 100% recovery. He aims to get me back to work (part time to being with) in the next 6-8 weeks, all being well. He completely understood ALL my symptoms which range from the head down to my feet. His oldest patient was 93 and she made a complete recovery. I've now got a tailormade exercise programme which he wants me to do for 5 minutes, 5 times a day. Apparently, any longer wouldn't be beneficial to me. I've been going about things in completely the wrong way but it wasn't my fault. Without proper guidance and help how are we supposed to know the right things to do? My neck problems are causing some degree of dizziness as the blood supply to my brain is restricted and my levels of anxiety are also adding to the problem. All the horrible feelings I have in my limbs, e.g. numbness/pins and needles/feelings of electric shocks/altered sensations are ALL coming from the pressure pads in various parts of the body which are activated by the balance mechanism. I've woken up today with a much more positive attitude. I hope this gives you all some comfort too. Frances x |
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14 month for me and i feel pretty good...i run on the treadmill, party, etc....im still spacey head feeling though which has been the lingering part....when i drink the next day its alittle worse but im getting better......if the spacey head feeling went away i would be 100 percent |
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That's wonderful new Frances! This doctor wouldn't happen to be located near Dallas, Tx would he! ;) My hollistic doctor has been doing neck stretches w/ me and massage around the back of my head which I think is helping a little. good luck w/ everything. I really hope that it is true that we will all recover to 100%.....lately I have been really doubting that it will happen. |
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Hi, everyone Frances - good news!!!! Frances - you are in the UK, aren't you? It's a shame, that your wonderful consultant is located far from my state of Oklahoma, USA. Lauren - your dear Dallas, TX is not far away from my Stillwater, OK. If you find somebody who can help you - share the information with me, please. Everybody - stay strong and continue live your lives - one day at a time..... Rich - the owner of the page - thank you for letting us talk to each other! Anna |
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As ever, you're very welcome, Anna. |
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Frances, That's excellent news to hear. I myself will be visiting an inner ear specialist in Austin TX (Lauren I'll keep you posted) in April and I expect some of the same news that you were given. It's encouraging to know that the numbness/tingling/electric pulses I feel in various parts of the body are related to the balance issues and not something more. Anxiety makes it worse. Lisa, I have to agree with your outlook on things and your source of peace. (James 1:2-4 ; Romans 8:18) Email me if you get a chance, I'm excited to hear about what God is doing in your life. (cwdr0105@yahoo.com) Blessings to all. Matt TX |
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Hey All Frances it's excellent to hear you are feeling alot more positive. I myself am feeling alot better about my future even though I had to give up my wonderful job as a West End (london's equivalent to Broadway) performer. It was very sad, but my doctor (and Anna) said that the loud noise is what makes my symptoms worse. Now I can concentrate on getting better (even though i'm a jobless bum!!) and that makes me feel more positive. I am also glad to know about the numbness and tingles is down to balances issues as i have just started to notice that i have that feeling in my arms and legs quite alot recently. Anyway the main thing is to Keep strong and always remember to stay postive, WE CAN ALL BEAT THIS. Thank you Anna for your advice on loud enviroments, it helped me, ALOT!!! Stay Blessed Annie
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Hey Annie - What show were you in?? I am in london too.. I am impressed you even managed to go to work with this thing! MOst times I am too tired! Frances - If you are in the UK - is this specialist you saw in London?? Recovery to all! deee |
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I'm so, so happy that I've been able to bring some encouragement and hope to you all. I mentioned this site to the consultant and it made him very sad that so many people are suffering unnecessarily, mainly due to the lack of EARLY treatment and understanding of all the various problems the inner ear has on the rest of the body. I'll certainly keep you all posted on my progress. I've just done my exercises and I'm really dizzy but at least it hasn't induced a panic attack because he talked me through the relationship of panic and dizziness. He said it would take a while to re-train my brain into thinking nothing bad is going to happen to me when I panic and the attacks will gradually subside as the dizziness decreases. Just for the record, I live in the UK in the county of Surrey. Frances x |
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Hello Fellow Labbies, This is my second bout with VL, while it's not as intense, I still wake up dizzy most mornings and fatiqued. I appetite is pretty much gone and I've lost a bunch of weight. I haven't gone back to the doctors, because there really wasn't any constructive advice they were able to offer the first time. I know I'll get better, and I've been going to work every day. Today, I had cramps in both my calves. Does this sounf familiar to anyone? I've had some good days too and I'm taking Xanax for the really bad days. I'm about 3 months into this episode. I am trying to stay positive, it went away intirely last time. But, today, I'm having a particularly bad day. Maybe I should try more vitamins, I just don't know. Any suggestions? |
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which town in Surrey? Deus |
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Hey Dee, Its was a motown show called "dancing in the streets" at the cambridge theatre, in covent garden. I'm very sad that i had to leave, but I have been feeling very positive about getting better and in a way know it's for the best. Frances, One of the hardest things I'm doing is convicing my self nothing bad is going to happen, I have gone so far, I have found it hard to leave the house, but the day comes when you start believeing that nothing bad is going to happen and it feels FANTASTIC, so hang in there and keep telling yourself nothing bad is going to happen. Try not to worry, In the words of the late Sam Cooke " it's been a long time coming, but a change gone come." Peace Annie |
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Hey frances, Im south UK / london too, please could u post what hospital/balance centre that you saw this specialist/ and his Initials, so that i may try be referred if i dont get answers soon ?? Yip annie, thats cool, these things happen for a reason,... One door might be shutting but its because we maybe had to redirect our lives a bit before another door opens.. dee |
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Hi all- I'm scheduled for an MRI on Monday morning, and my problem is, I'm extremely claustrophobic. I was able to have them schedule an "open MRI", supposedly not quite as tight quarters as an ordinary one. I know that many of you have had this done already, and I'm wondering if anyone might be able to give me a little encouragement. I really need to have this done, and I don't want to take a sedative (they offered). The thought of being enclosed, dizzy, and fighting off a panic attack is almost too much. Anybody have any pointers on how I can get through this thing? Thanks much- Kim |
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Kim Have a shot of brandy-it calmes the nerves and will make you relax. Deus |
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Kim- I am claustrophobic too and had an MRI 6 weeks ago. I was absolutely fine. They give you a little buzzar to hold onto while u are inside, so if u get panicky they will slide u out right away. Also, I had headphones on with music and every so often the technician would cut in and ask how I was. Tehre is also a little window abopve your head with a mirror which caes the technicians and part of the room so I really felt as though I was safe and could see people. So, don't worry...I was in for almsot half an hour and the experience was quite alright! Good luck with it all. tim |
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Hi, everybody Kim - I just recently had MRI of both brain and neck - two times longer, than just a brain MRI. It took them a whole one hour to make everything done. Being in the tube - lying flat on my back - of course it made me more dizzy than I usually is. But I relaxed all my muscles, closed my eyes and tried to visualize something pleasant - sea shore with big waves, or nice wood with wind blowing, mountains covered with snow. It worked for me really well. You will also be fine, Kim! Annie - I also lost my job because of the disease - I was a well paid high professional - engineer and researcher. It was a real "knock down". I was holding the job as long as possible and my employer and my co-workers were very-very supportive. But one day I started naturally collapsing at work from complete exhaustion. None of us should let the things deteriorate to such a degree! I have sworn to my family and to myself, that I will never-ever be so cruel to my health. It is NOT GIVING UP to the illness - it is about being WISE and CAREFUL. Anna |
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Thanks - for your support and suggestions concerning my up-coming MRI. Deus- a few months ago, I may have considered your suggestion of a shot of brandy - but not these days......... :) Tim and Anna - thanks for sharing your experiences. Having a "panic button" in my hand, and hopefully headphones on my ears should help. Visualization is a great suggestion, I will definitely be doing it! Anna, I know I will be fine (yikes), but its nice to hear it from someone else. Thank you. I appreciate you all- Kim |
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Hi all Ive been suffering from what I am told is VL and BPPV for 8 weeks. This is nothing in comparison to some of you. I am a teacher, and have already missed half a term as i feel too unwell to work. I have had no advice from my GP, just that it will "go away in its own time"! On of the most troublesome symtoms for me is this heavy head I often experience. It feels like my head has a brick in it!! I have trouble holding my head up and feel that all I can do is sleep to try to relieve it.It seems to get worse when I go out for a walk. The symptoms get so bad I have to go home. I then get really depressed because i cannot do "normal things" Does anyone else have this? Also, im not sure how long i should wait before I should ask to see a specialist- any advice? Frances- Im really pleased for you- it does sometimes feel as if a 100% recovery will not happen. Your story gives me some encouragement! Rich- its great to know that I am not alone - carry on the good work! Sas x |
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Frances you're welcome. I hope the Dr. will be able to help you. But if he/she doesn't remember there is another option. My prayers are with you! Matt TX, I will share soon. Many blessings to all Lisa |
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Sara I am also a teacher who has been diagnosed with VL. I missed half a term too and have suffered for 4 months with the same symptoms. I get heavy, tingly head, and can feel awful when out, and nauseous. Sometimes I have slight tremor in my hands and even teeth. My vision feels strained and even bit sore at times. Doctors just say it will go in time. I am trying Gingko and taking little else. I find walking good therapy, even though when out it may feelworse. The body has to re learn things and realise its ok. I have got a lot better recently, and have had good days. Crowded places, noisy places, stress all trigger that unwell feeling. I am however more positive than I was, things do settle down a bit eventually. What I need to know is will flying cause me problems? Does anyone fly with Labyrinthitis? All thwe best. Alan. |
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Hi all- Well, I made it through my MRI today, only to be told 3 hours later by my GP, that I have to RE-DO it again tomorrow(no kidding). I can't tell you how hard it was for me to get through the first one, I don't how I'm gonna do it again. They were very vague in explaining why, which is very frightening. They said something showed, but they didn't think it was related to my dizziness problem, and they want to do it again with contrast. (I didn't have contrast with this first one.) It doesn't make sense to me at all. Has anyone ever had to re-do an MRI and have it come back ok? I'm terrified. I can't stand being in that machine, and now I'm terrified of what they're finding ! I'm supposed to hand-carry the results into a neurologist that I've never seen before on Wed. Sorry if I sound like I'm whining - I'm not. I just am so frightened by this whole process. Kim |
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1 year and 2 months....back to my normal lifestyle but not normal life.....drinking on weekends, running on treadmill etc.....But But doing this all with the spacey head feeling....and way more tired than i used to be........but after so long i just thing u get sooooo used to it nothing bothers u not even the anxiety...... |
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Hi, all Kim – this RE-Do happened to me several times with my mammograms 10 years ago and 2 years ago. They usually first do so-called screening mammogram which is always questionable because the contrast of the image is not enough to see much detail. If they see even the slightest sign of something – they send women to RE-DO on equipment that has more contrast. Both times I was scared to death by their “findings”. In fact both times – there were NO FINDINGS – just not enough contrast imaging. Both times re-dos showed that everything was OK. Kim - With your MRI - first of all I have a reasonable question – why did not they make your first MRI both without and WITH the contrast. Usually they do it both at the same procedure one after the other, because contrast imaging gives much more information. Maybe – they just forgot? Also – this is the first MRI in your life (it looks like that), so they really do not have any of your brain image to compare with (for example – your MRI taken several years earlier). It is really hard for them to tell what is NORMAL and what IS ABNORMAL from the first impression. Brain images of even absolutely healthy people can VARY significantly. Also technicians who did your MRI could screw up something performing the procedure – this happens VERY OFTEN (they will never tell you about it!) I worked as a scientist-researcher in medical imaging field. I know that there are a lot of things that prevent getting the RIGHT image and the RIGHT diagnosis form the first attempt. Kim – the best thing is to TRY STOP WORRYING for now – they did NOT tell you something horrible. I completely understand your anger and frustration. You really have to put all of your strength and go get the image with the contrast. It should be shorter, I guess. If you could survive your first MRI – you will survive the second. Best luck – and keep us informed. I am myself awaiting the results of my third MRI imaging (1995, 2004, three days ago). It must be a special doctor – radiologist who “decipher” your brain images in many slices. It takes two to three working days to get the results from such a specialist. Kim – you said that they send you to RE-Do the MRI after 3 hours. I strongly suspect, that it was their TECHNICAL MISTAKE, not “something wrong” in your brain. Everybody, keep strong Anna |
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Hi all - Chad - tiredness is my main complaint now too. More tired than ever! But better than feeling like falling down. Hopefully it eventually goes away. Anna, thanks for all your advice on this website. It has meant alot. tim |
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Hi Alan- thanks for your help. i will try to walk more often. After having some bad experiences whilst out it is hard. Its also helpful to know that im not the only one with a stupid head! I am taking Prochloperazine. Have you found the Gingko helpful? cant help with the flying issue- sorry. I hope you are feeling better soon. Kim - sorry to hear about your MRI. Im sure that it will be fine. I felt very claustrophobic when i had mine. I agree with Anna. If you survived one, you will make it through another. You are a strong person. Anyone who suffers from what we have has to be right? Keep strong everyone, your words are helping me to do so. Sarah x x x |
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Dee/Annie I'm attending the Mayday Balance Clinic in Croydon and seeing Mr Woods. He's absolutely fantastic!. Hope this helps if you don't get any joy with your own hospital/GP. Well it's been a week since I started my new VRT exercises and I'm really dizzy and sick. I'm much more positive though and I know that in the long run it's going to make me better by inducing the symptoms. I haven't had a panic attack for a week now and I'm not so anxious. I keep thinking of what the specialist said to me and it's a case of mind over matter. Deus - I'm in Woodmansterne, Surrey Hope you all have a good week. Frances x |
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Sara thanks for the reply, gingko seems to have been found helpfull in polish trials as it improves blood flow. get specialist advice as soon as possible as GP's know little. My GP said yesterday I should be over VL after a few weeks..yet look at all the comments here!Also depression and anxiety seem to be the worst part of all this esp if you have to go somewhere busy or noisy. Does anyone else have slight tremor? is it anxiety or what? Also have funny vision at times like painful when move eyes about, even slight shocks, other days feel nearly normal. |
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Hi, everybody Sarah, Alan - some people on this webpage tried Gingko Biloba on a regular basis for a long time. It is not a "cure" but some people see improvement with time. As for me - I just told myself one day: "Go get it and take it. It won't hurt". I am still slo-o-ooly improving. Chad - I have been watching your struggle during all those months. I think you still have a great potential for further improvement! Look - your life has ALMOST returned to its previous quality, you are not worried any more, and you really enjoy you life again. That is exactly what the word "recovery" means!!! Frances - I got my long-term Social Security Disability pension. I stood for my rights and I got JUSTICE. Not happy about my illness and about being "disabled" but at least I am bringing a little money in the family budget. Hugs, Anna |
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Robin - somehow I missed your post about the second bout of labs after complete recovery from the first one. I remember your struggle through it. Keep my fingers crossed - that this second round will be shorter.... At least in my case, the second bout was somewhat shorter, than the first one, and both ended up in complete recovery. Why does IT come back????!!!! This is the question I asked myself millions times, I searched everywhere, I thought, analyzed scientific information, analyzed my own and other people's experience. Dormant virus sitting somewhere in nerve cells? Possible. Decompensation i.e. our brain - recovered (compensated) after the first bout of the illness - "foregets" how to work with the impaired inner ear (decompensates)? Does not look like a serious theory. Some new virus which attacks "the weakest point" in our bodies - the inner ear? This looks like a true. If viruses are most likely the cause of our sufferings and recurrences - we have to keep our bodies as strong as possible in everybody's unique situation. Robin - you are right - vitamins, healthy diet with A LOT of vegetables and fruit, eating small meals in short intervals, of course - fats, sweets, salt - in restricted amounts, exercises -not to the point of exaustion, PLENTY of fluids -it prevents muscle cramps. Everybody knows these healthy lifestyle advises -not all of us follow them in our dayly routine. Anna |
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allan i am a flight attendant I have had this for three years now. Flying does not make it worse for me no symptoms on the plane. when I get off the plane I have this full ears feeling and full head. I still have this off balance feeling and I am more tired than ever before does anyone know why ? I am soooooo over this just a few days ago i just cried I just want to be normal again. In fact I found out that one of our flight attendents had this she committed suicide and left two little kids behind. How much of this up and down can one person take? |
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Hi- Well, I made it through my 2nd MRI and met with the neurologist today. The MRI came back ok. Anna - Thank you for your post explaining the reasons sometimes a second one is necessary. You were ABSOLUTELY right, the first one just didn't show enough, and the contrast made the difference. I believe my GP should have ordered contrast to begin with, but thank you, your post gave me the courage I needed. The neuro gave me VRT exercises to do 2x day, he said I had some "jumpiness" in my eyes. He also started me on a low-dose of inderal for my migraine problems (said it will also lower my blood pressure, which has been up since all of this started.) Tonight, my left ear is sore to the touch, exactly how it was the week before all of this started - anybody else have painful ears ? Take Care- Kim |
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Beata hope you soon feel better again, dont let depression get you, try to keep going and chat to friends as much as possible. I went out today felt wobbly and nauseous but hey was glad to get out and see things and go places. Guess your still working so thats good too, all the best. my docs say should get over it some time. Alan |
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Hi All Sadly I see quite a few new faces.Labrynthitis sure seems to be getting around. Well my update so far: 8 months into this.Have been 98% for the majority of march until I got a terrible headcold, blocked ears, head , nose the works and it has knocked the back out of me and naturally has made my dizziness worse which is sooo annnoying as i start back to work on monday.Sure hope I have recompensated by then...I really have been feeling preety good till then.Lets hope I dont get Labs in the other ear!!! So my situation is much better than it was 3 months ago.I only started to see some light in month 6...so people who havent reached that point dont worry....improvement will come. Its really annoying I cant make 100% for just one day...I hope in 4 months, by which time it would have been a year I can post a full recovery!! I find my main syptom now is vibrating vision when I focus hard on something.I heard this is one of the last symptoms to go.Anna is this true? Also Anna how did your bouts finally end?? ....did they end without you noticing.I am really curious now how to recognise the final phase of this junk which i do think I am close to. Good to see some people are making progress Frances, Allan , Anna etc Chad I noticed you posted again and it still hasnt gone....youve been here for ages!! I think this year will be the year it gradually goes away.Atleast it has IMPROVED for you and you are LIVING a normal life.Thats all good fella and the way it should be.I am sure you will be fine.We should all try and enjoy life and make the most of it otherwise you just start getting depressed and wonder where all the time has gone.Remember always that this thing is not life threatning and does end.Hope and perserverance will get that.Keep up the exercise, VRT etc ....its all conducive to a faster recovery. A fast recovery to all Deus |
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Beata - You asked: "How much of this up and down can one person take?" One person can take A LOT!!! I have been having IT since I was 20 years old (relapses/remittances pattern, 5 major bouts), and I am 54 now. 34 years with IT. Everybody - NEVER-EVER, please, think about hurting yourself! I have to admit, that I DID have suicidal thoughts at the worst times of IT. Remember - I was bedridden for several months at a time and I had to resign from my great job in December, 2005. I always tried hard: to CALM DOWN as much as possible, to ACCEPT my limitations and to BE PROUD OF MYSELF for being STRONG. I am still getting better - unbeleivably slowly, though. It is a big heavy thunderstorm coming to our area in Oklahoma, with tornado warning. And I am not in the bed dying from headaches and ear pressure, only slightly off balance!!! For the first time in 28 months! (touching wood)! I am tearful... Anna |
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Chad, In my experience Drinking only makes this thing linger for longer. Just stop the drinking for a little while man and see how it affects you. |
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Deus - I had 4 full (100%) recoveries in the past. I am on the 28th months of my fifth relapse (bout) of a complicated recurrent inner ear disorder. Although I am FA-A-A-R from normal - I am HAPPY, that IT IS STILL GETTING BETTER!!!! I can talk to my children on the phone for 10-15 minutes without head and ear aches, I can work on the computer for 20 minutes at a time without spinning of the room or "floating" of the screen. I still cannot stand crowds and noisy places. I am off balance -like I am drunk - most of the time, I move rather slowly keeping my head in one position and looking down, my eyes are half closed when I feel tired (and I feel tired almost all the time except early in the morning - after a good night sleep). It FEELS SO GOOD being in the end of this horrifying tunnel. Looking back I cannot believe, that I have made this way..... That has been the hardest ordeal in my life.... Wish you all - PATIENCE. Hugs, Anna
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Anna - I feels o bad for you. I truly hope this gets better once and for all. Makes my little ole 2 month episode seem like a breeze. Buit of course it hasn't been. I think we all realize how strong we really are having gone thru this. Chad - I agree about drinking not helping. A glass or two of something is fine for me, but if I go out and try and have a couple martinis and copious quantities of wine with friends I notice I wake up feeling a bit dizzy and off balance the next day. tim |
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constant internal shaking is one of my biggest symptoms...im always shaking....i also read that on the main page...anyone else feel this??? |
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hi my name is emily and im 18. for the past 5 months i have felt like complete crap. i have ringing in my ears that WONT go away i feel as if i am dizzy basically almost 24/7 when i move i feel as if something is shifting. im scared of everything and it's so hard for me to leave my house! i also get body twitching tingling, eye pain, head pain, jaw pain. everything! i also constantly see black dots floating and purple dots in the distance. another thign is a get this really bad pain in my head that comes and last foor a couple of seconds and than goes away again. it's so frustrating i can't take it anymore. i have been in and out of doctors offices all they do is tell me to get a therapist. i don't know what to do. i feel like i've lose my-self! i don't know who i am anymore! i just want the old me back! |
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hey all im 7 months into this and im starting to notice that my bed and the floor does not move nearly as much. laying down in bed is so relaxing now. i also just did a 4 hour show with my band on saturday and made it all the way through and slept good that night. the next day my ears felt weird and my throat hurt but that was normal even before i got this ear thing.
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anna-what were the last symptoms you had? how long did they take to feel 100% chris |
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Hi everyone, well I'm just past the 6 months with this now and since starting the tailormade VRT exercises just 10 days ago, I'm now starting to feel a difference. The nystagmus (eye jumping)is pretty much under control now for most of the day and when I look around me everything is still. I think once my neck starts to loosen up I'll feel a whole lot better. The sickness is starting to subside too as my balance is improving. It's the turning exercises which are really making the biggest difference to me I think. I'd been doing my own version of VRT for quite a few months, whilst waiting for proper advice from a Specialist but none of it really worked for me until I saw my new Specialist 10 days ago. I only wish I'd seen him months ago, I might not have had to suffer for so long. Deus, I'm really happy for you and I hope I continue to progress in the right direction as you have. Anna, you certainly have come a long way on this very painful journey. You are in my thoughts. Frances x |
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Having a crap day today. Just when you think things are improving, you wake up feeling dizzy and heavy headed. I am trying to be positive, but I find that as time is going on it gets harder. I have decided to go part time in my teaching job. I dont think the huge work load that I have has helped me. Who knows whether stress is a casual factor. All I know is that I have had this twice in the past 3 years ( since I have worked in my current college!). I think I am improving overall- some better days followed by a couple of rubbish ones etc, etc. I really want to go back to work and be normal again, but until I feel better I just dont think I could drive or deal with large groups of students!! Still have constant tinnitus which is really annoying. Will this go as I improve? Hope everyone is ok. Sorry to moan, but I cant keep taking it out on my boyfriend!!! Emily- I really understand your frustration. It is very hard to stay positive. Remember that life will improve and that you will get better. The first time I had it I thought it would never go and it did eventually (about 3 months). DONT GIVE UP. Just think of how good you will feel when it has gone. As difficult as it is I always remember the words of my doctor- "positivity aids recovery". I did want to punch him initially when he said this, but I later realised that he was right.Have your down time- shout, cry- whatever helps, and then pick yourself up again. You will appreciate life again and feel healthy. Mine has returned ( 2 months so far), and I do feel really depressed sometimes, but I know it will go and how much more you appreciate life when it has. Much Love Sarah xxxxxx |
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I've recently been told by an ENT he suspects that I have Labyrinthitis. I'm 31 years old, and consider myself to be in good health otherwise, recently stopped smoking (Jan1st), although can go through about 5 bottles of wine a week My story. Early Jan 2006. Feeling unbalanced, groggy, strange feeling of falling when going to sleep, after a days, I woke up in the morning with a fuzzy feeling in my head, when I opened my eyes the room was spinning, I attempted to get up and get some water, but could not walk without holding the wall due to the dizziness. After getting the water I got back to bed (still spinning) and managed to get back to sleep. When I woke up the spinning had stopped although my eyesight was slightly off. I have not felt the same since. My symptoms. Lightheadedness, especially in the morning. Mild fatigue. Mild pain in right ear which sometimes feels as though it’s vibrating. Constant feeling of being unbalanced, various degrees of severity. Have started wearing reading glasses all day. Muscle spasms / Twitching especially in right thumb (could be RSI - Due to constant computer use over years) Random pains all over like a single pin being inserted, pain only lasts for a few seconds. Walk has changed, like limping without pain, ENT said this is due to the balance problem. Short term memory problems Short concentration span. Anxiety and anxiety related symptoms. I've recently had relaxation acupuncture and massage, it seemed to help, have also started reading a book on reflexology. If anyones intrested, I've setup a forum (without any annoying adverts) for labs and inner ear disorders) http://forums.v-menu.net |
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Hi Frances Good to hear about your exercises and they are making you better.Mine arent tailored to me , but I have a programm of 25 exercises I am meant to follow until each one doesnt make me dizzy.So I guess they are tailored in a way.... I recently caught a cold and have dropped to like 50% from my 98%, but I am sure I will get better again.Just annoying as Im back to work on monday!Great timing! What exercises do you have?Any good ones for gaze stabilization? Cheers Deus |
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Deus. I am having trouble with my eyes as well. Can you describe your exercises? Thanks |
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Chris Hold a card in front of your face at arms length and move you head left and right or up and down without taking focus of the card.This is what I do. Deus |
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Hi, everybody Chris - Wow! 4 hour show! You are doing quite a progress!!! As far as I remember, the last symptom to disappear in my first relapse was blurred vision - especially while reading. This feeling was long and stubborn, and it made me crazy - I was a college student at that time. Chad, Garry, and other young guys who mentioned DRINKING as a good thing to relax, or just a pleasant habit. I strongly disagree!!! Keep in mind - ALCOHOL of any type is TOXIC to delicate inner ear structures - it is a PROVEN SCIENTIFIC FACT. I, personally, like a glass of good wine during remittances (ocasionally). But NEVER during relapses - it is a big NO because even a couple sips of wine send me rocking and nausea. Frances and everyone - thank you for THINKING about me. I am trying hard to gain my remaining BALANCE (whatever is left). I am tired of the struggle, but I do not have any other choice except - KEEP ON GOING. Deus - what kind of exercises do you do? Where did you get them - on-line? Anna
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Anna Your ENT or Specialist prescribes them to you. . I seriously suggest that if you have not got any, go and see your balance doctor and get doing the exercises.They will speed up your recovery and shorten your struggle. Deus |
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hey everyone i caught a cold and im not too happy about it. though i know its normal to this thing and its making me feel better knowing people do get over this and its a temp problem. i do know im making progress and that 4 hour show proved it. i can't wait to get my life back. i am starting to realize that im learing alot and growing alot through this illness though it stinks now. |
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Hi everyone - I have a list of balance and eye exercises my neurologist gave me to do 2x day. They are all very simple, and yes, they do stir up the dizziness, but thats all the more reason to do them. I'd be happy to post them if anyone is interested. Kim |
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Deus/Chris Here are the gaze stabilization exercises for you both and anyone else who has a problem with vision. By the way, nystagmus is the last symptom to go, apparently. GAZE STABILIZATION -To be carried out 4 times a day in a safe envoironment, in a standing position, with the target at arms length. -Each exercise should be carried out 20 times, at a speed that ensures the target remains in focus at all times. 1. Hold target in front of eyes and move from side to side without moving head. 2. Hold target in front of eyes and move up and down without moving head 3. Hold target in front of eyes and move towards and away from nose 4. Hold target still in front of eyes and move head from side to side, without moving the target but maintaining gaze on target 5. Hold target still in front of eyes and move head up and down, without moving the target but maintaining gaze on the target You are supposed to do this every day, there should be an improvement after a few weeks. Don't worry if it takes longer, it was 5 months for me. My 'tailormade' VRT exercises are mainly lots of bending and turning which really does bring on the dizziness. It's vitally important that you spend at least a couple of minutes loosening up your neck before doing ANY exercises. Here are just a few: TURNING EXERCISES Sit down, then stand and turn round and sit down again. Repeat in the opposite direction. Whilst standing, turn round on the spot and then in the opposite direction. First with eyes open, then shut. Whilst standing, bend forwards from the waist and then straighten. Whilst standing, bend forwards from the waist and then turn the upper body to look behind you, both directions. Whilst standing, link arms with someone, or use maybe an umbrella, and make a wide circle, then in the opposite direction. Each exercise should be done 5 times and for just 4 times a day. It wouldn't be beneficial to do them any more often. I've been battling for 6 months now but since getting these VRT exercises, just 10 days ago, I'm certainly improving and I hope you all do too. Frances x |
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Hi all. I'm writing this to give all hope. I was a terrible mess when this started 14 months ago and stayed that way for about 11 of those months. Then the symptoms began to gradually subside (and I mean gradually). I am feeling very, very good today and have many good days mixed in with some bad periods. But not nearly as bad as last year. It is a long and gradual recovery but it will happen. Try to cope and try to find someone who will support you through this. |
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Chad that shaking is one of my last to go symptoms. I feel shaky inside and my fingers tremor even my teeth a little! docs want me to see neurologists so they may not know people with this can get shakes? My other problem seems to be wobbly balance, but lots of other nasty symptoms much less after 4 months. all the best. |
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Frances - thank you for posting the exercises. Gaze stabilization exercises - that is what I am doing now. May be I have to be more diligent and persistant with them. About turning the head, or bending over - In my case - I have to be really careful, because I have a recurrent perilymph fistula (PLF) which opens up with violent, fast or sharp movements. Active PLF brings symptoms similar but even more severe than those of initial viral labs. Deus - thanks for the advice about looking for VRT tailored for me. The problem is, that any awkward movement can bring the PLF (actually - tear in the oval and round windows membrane) back - and... I am at the BOTTOM again..... Anna |
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Anyone else feel very tired and wobbly shaky and lacking energy especially in the mornings? I feel depressed about my lack of energy. I am 4 months into this. Doc says do all the physical things I can. The good thing is the eyes have gone back to near normal, so should be more grateful. |
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Frances- thanks for the exercises. I am due to see a neurologist soon, but I will try some of these until then. I drove my car today. Only up the road and back, but it felt like such an achievement. Still having probs though and have been getting very frustrated recently. Want to go back to work, but still struggling too much! Someone mentioned painful ears. I get this particularly when sleeping at the mo. They are painful to the touch for fairly long periods of time. Not sure if its a sypmtom or not. I would just like to say that although I dont leave many mssages i frequently read all your messages. Your words certainly give me encouragement and hope. Thanks!!!! Sarah x x x x |
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Hi, guys I drove my car to and from my neurologist today! My mother sat next to me and looked to the right when I looked to the left (while yielding). We made it safely together. I was proud of my acheivement and reported it to my neurologist. He said, that my MRI - the third one since 1995 was normal, and blood tests for Lyme disease (viral) and another (autoimmune) disease - myasthenia gravis - were both negative. Poor Anna!!!!.... The same old thing again and again - my DISABLING ENEMY IS INVISIBLE, INDETECTABLE (by tests) and thus.... INCURABLE. I am not even sure any more, that negative tests mean good news.... On the other hand - I DROVE MY CAR for 10 minutes! I have not done this from July 2005! No, definitely, I should not complain. We will ALL have better days. Hugs, Anna |
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Alan - Yes, I am extremely tired most of the time and I am into my 3rd month. But I am 80-90% better with all my other symptoms, so i am not complaing. But I think I am MORE tired now than I was when in the thick of the labs/bppv/ Am told it should wane though like everythign else. Just praying I dont have a relapse of other symptoms. tim |
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8 1/2 months....was doing well until I caught a cold whcih has set me back for a few weeks.Hopeully gradually recompensating.Thought I might beat it in a year.Unfortunately looks like it could be up to 2 or 3 years.Urgghh. Deus |
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Hi all, I first had an attack on VL after flying from South Africa to the UK in 1997 - it has recurred at intervals, with no-one in the medical profession here (ENT, Physican, Homeopath) really offering much hope - time is what I usually get told, but I find the whole experience very debilitating - thank goodness my husband and I work from home, so don't have to drive to work ... but some days I really can't function. I have been reading your comments and although I don't have vision problems often, I can't watch anything on tv that flickers or has lots of movement when I am having an 'attack' .... generally after 9 years of this on and off it would be good to find a 'cure'!! I will try Ginko Biloba and walking! Hope someone finds a cure soon - there seem to be so many of us with this problem. All the best! Sharon |
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thanks so much sarah. i just feel as if i will never recover and feel like my old self again and it's really hard for me to think possitive. |
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deus the cold set you back and that seems to be normal....i just had one too and it really made me feel so off and bad. i was doing better too. now after the cold is gone im starting to do better again.....i honestly don't think your going to have to go through 2 or 3 years of this. time is what it takes but that doesn't mean you will have it for years and years. like me....anxiety is a huge thing and can keep you from getting better faster... anxiety being thigns like thinking your going to have it for years. i constanly worry if maybe the docs overlooked something. i know its not true and i know whats wrong but i can't help it. |
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Hi folks, I am new to the post and have spent days reading everyone's stories starting from page 1. It feels like I know Anna, Frances, Chris, Deus, Chad, so well. Thanks for sharing your lives, I have really learned a lot from you. Amazing that so many people suffer with this. On April 24th it will be 6 months. I pray like everyone else that I will wake up one morning and be free to live again. I know, it sounds melodramatic, but all I wish is for my life back again. I have been using Ginko Biloba for about 2 weeks. I was severely depressed for months, but have reached a stage where I want to try and enjoy life as much as possible. I have been using Ginko Biloba for 2 weeks. I can't say that I notice a difference, but I've heard it can take 8 weeks to have an effect. Even though I can't tell a difference, oddly enough, it is something else to put on my list of things that I have tried...in some weird way I feel like this gives me some control. I have had tests like so many others, MRI, ENG, Cat Scan, etc. and told that it could be Labs but will eventually go away...that was in November 2005. |
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Hi everyone, I've been reading your posts for sometime now and finally decided to join in. My story goes: Tuesday,August 31,2004, came home from working the night shift feeling fine when all of the sudden I got a loud roar in my right ear and then some ringing and then my ear went dead. I mean zero hearing! At first I thought it had just plugged up as the weekend before I had caught a slight cold which I took some Claritin D for. I've struggled with sinus problems since having a hysterectomy about 16 years ago. I had a sinus surgery 2 years prior to going deaf. Can't help but think all this is somehow related. The deafness continued all day so when my husband came home we agreed I should probably see the dr. They got me right in and all she said was that I had alot of fluid in my ear and that it was probably an ear infection. She gave me an antibiotic and said I'd feel better in a couple of days. I wasn't experiencing any other symptoms at that time so I believed her and finished out my work week taking her pills believing I would indeed get better. We had planned a trip to Reno, NV that next weekend and I didn't feel sick so we decided to go. BIG MISTAKE! Arrived in Reno on Friday and I was feeling kinda funny- sort of off is the only way I could describe it. Saturday morning we decided to go to Carson City to do some antiqueing. The elevation there is considerably lower than Reno and the minute I got out of the car my whole world starting spinning out of control. I couldn't look at anything. This was at about noon. We went directly back to our hotel. I managed to keep from vomiting until about 6:00pm and continued to get sick until 9:00pm when my husband figured I needed to go to the er. They let me sit in a wheelchair in the waiting room until 3:00am. ( I was competing with drug overdoses and a stabbing due to the burning man festival being held that weekend.) Tried to do a catscan - couldn't stop vomiting so they gave me a shot of something and then finally was able to do the scan. Nothing showed up so the er dr. said it was probably labrynthitis and when I got home I should see my dr. immediately about my hearing loss. Gave me phenergan for my nausea and meclizine for the vertigo. Worked well enough to get me home. Went to my dr. and she then decided that she didn't treat me correctly so she sent me to a hearing center. Pretty much a total loss. Sent me to the ent who did my sinus surgery and he confirmed that my hearing in my right year was gone. He said I had no excess fluid and that it was not Mienier's disease and was sure it was labs. Had an MRI and it came back fine. He prescribed 80 mgs predisone for 2 weeks to see if it would reduce the inflammation and get my ear to work again but no luck. Went on a medical leave from work (no pay) for six months and tried to get better but after struggling with the balance issues, brain fog, pressure in my ear,and not being able to drive, let alone having single sided deafness, I gave up the job and decided to stay home and take care of me. It has been 19 months since all this happened and not much but the constant vertigo has changed. I am getting used to it I think. The only time I have a dizzy is if I move too abruptly. I take antihistamines and decongestants almost daily and it seems to help. These terrible weather systems that keep pounding the Northwest aren't helping much and I'm really looking forward to summer. It seems as though my symptoms aren't as bad when the barometric pressure is up. Thanks to all of you for sharing your experiences with this beast. I felt very alone with this as I and no one I knew had ever heard of this before. Keep positive thoughts that we will get better. All my best, Lauren from Washington State |
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Hi Lauren from Washington State, Welcome! We will all get through this! Have a good easter weekend all dee xx |
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WHAT DOES EVERYONE THINK I SHOULD DO,,,,I HAVE BEEN TO THE ENT I RAN THROUGH ALL THE TESTS THEY TOLD ME MY RIGHT HERE IS DAMAGED ETC....ITS BEEN LIKE 1 YEAR AND I WAS THINKING IF I SHOULD CALL BACK OR NOT...ALL THEY USUALLY DO IS SEND ME TO VRT.....AND I RUN AND DO EXERCISES BY MYSELF ANYWAY.......ANY ADVICE |
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Chad When I hit one year (which will be in 3 1/2 months) unbelievable!!! I am going to ask my doctor if I have Migraine associated Vertigo as I get a lot of headaches with this crap.Its worth just exploring other options- it wont hurt. Although to be fair it could just be normal labs, it can take up to 2 years or more to clear.... Deus |
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Hi, everybody Molly, Sarah, Lauren from Washington State, Alan, other newcomers - sorry that you are on this website being ILL. But it is GOOD and COMFORTING that we are able to SHARE our sad stories with those who really understand. There is a Russian proverb that in my poor translation sounds something like this: "A shared grief is half the grief." I like what Molly said: "I have reached a stage where I want to try and enjoy life as much as possible." Just want to add from myself - Do NOT wait for your PREVIOUS life to return. Most likely, it WILL come back - only not as soon as you expect. No matter how dizzy and unstable you are - ENJOY your CURRENT life as much as possible. Have a good weekend. Anna |
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Hello again everybody, I've been too busy to keep on top of things on this board for a couple of months now, but last night I did a thorough read through all I've missed. Wow! there's a lot in there and it was a bit of a challenge to get through 2 months all in one go. ( not that it wasn't interesting; it was, - just the woozy head thing ) Anyway, I noticed something that I've just got to comment on. About a month ago Beata, an airline attendant, wrote in to say that she thought she may have cleared up an attack of Labs. with GRAPEFRUIT. This I think is very significant. I haven't yet actually ingested a lot of this stuff as it's ( like she said ) really foul tasting BUT this may change real soon! What I've been doing is using G.S.E. ( Grapefruit Seed Extract ) topically in various ways, and as a mouth wash. I've found it to be REALLY, UNEQUIVICALLY EFFECTIVE. I'm a very logical person, not easily swayed by the promise of ' wonder cures ' but this one deserves our attention. O.K.; - it's been discussed that having infected teeth pulled might be of some benefit to our condition, as the near proximity of all this bacteria to the balance centres would suggest this be done. I totally agree. I've found that tooth aches will lead to sore throat and even coughs as the infection can migrate easily from the mouth. It is very unlikely that these same bacteria would not climb the pressure compensation tubes that lead to the middle ears. I know what some of you are saying: " not bacterial, not bacterial !" Amigos, let's face it; we don't know what the hell is the root cause of this. I'm thinking: " Bacteria very likely, Bacteria possible ". I had a very bad toothache way down in Mexico last year and someone suggested that I try their Grapefruit seed extract. I put 10 drops in 8 ounces of water and held and swished for about 20 minutes for 4 days in succession. I then went on a road trip to find a dentist and she was absolutely amazed that I had not a TRACE of infection in my mouth despite the mess that my tooth was obviously in! She forth-with yanked the tooth and didn't even give me an antibiotic as a follow-up. My throat cleared up and a cough I'd developed disappeared. So I became intrigued with G.S.E. .............. On the bottle it gave directions for mixing solutions to apply to the ear canals to clear up ear ache. One was several drops in half an ounce of alchohol and the other was the same amount in glycerine. I often develop an ache deep in my left ear so the next time that happened I tried the alchohol mix in the ear canal. It stung way too much and I don't recommend it. I found the glycerine mix to be an excellent treatment. I've often used drops in the past that were prescribed by doctors for ear aches, that seemed to have little or no effect on my ears. In fact, they sometimes seemed to make things worse! This G.S.E. concoction WORKS and never seems to exacerbate the problem. I have no idea how infection which disturbs the balance centres in the middle ear can be treated by an anti-bacterial in the outer ear canal. It just works and I'm passing it on to anybody else who may have balance problems AND dull aches in the ears. People use this for intestinal complaints, cuts, decontaminating cutting boards, .......... all kinds of stuff. Can it be used internally for clearing up an attack of Labs.? I'm assuming that the extract I'm used to is going to have a similar action to the whole grapefruit put through the juicer which was recommended by Beata. I am trying it internally and started the first course of treatment this morning. ( 10 drops in 8 ounces of water, - twice daily ) The drops I'm using are made by ' Nutri Biotic' and come in a 4 oz. squeeze bottle. By the way, I'm still a bit dizzy but haven't had an attack of vertigo since early last summer. Ear aches come and go as usual but I'm controlling them pretty effectively with G.S.E. Also I avoid cold winds and take Ginkgo regularly. I'll let you know how the grapefruit experiment goes. Fond regards, Tom |
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Good morning, everybody Tom - good to hear from you. This thing about grape fruit juice - It also grabbed my attention when I read Beata's post. I think - if it helped Beata - it can help some of us. I am also going to try it - the same amount of GSE as Tom advised twice a day. Alongside with Ginkgo which I have been taking for about a year now. Anna
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what is GSE? |
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G.S.E. - Grapefruit seed extract
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Hello Fellow Labbies, This is my second bout with the labs, I had about a year and a half when I was fully recovered and it's been back since Jan. Although it is not as bad as the first time, it is none the less, pretty constant. I have been having a bad few weeks, but the worst has been the dizzies I am feeling at night when I'm laying down. I don't exactly sleep, kind of pass out and have very vivid dreams. I have a hard time getting up in the morning and getting to work. My appetite is gone and I've lost a lot of weight. I have no energy and I'm feeling so depressed. This bout didn't start with a cold or any health issue. I'm resistant to go back to the doctors, for more of the same. "you just have to wait it out". Do this symtoms sound familiar to anyone? |
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Tom, like Anna, you have peaked my interest about the GSE. I myself am going to look into adding that to my daily regimen. I have heard, however, that grapefruit/grapefruit juice can minimize the effect of certain prescription medicines (essentially making the medicines not work), has anyone else heard that? Robin, sorry to hear about your latest symptoms. While I have gone through severe depression at times and am always exhausted, that has had the opposite effect for me, I have gained weight because I don't go exercise as often as I used to. Hope you feel better, Molly. |
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Hi Anna, you stated you have taken Ginko for a year. Do you see any effect? I am now on week 3 of using it...I do feel like I have improved since this wicked thing started October 2005, but since I am only on week 3 I don't know how much Ginko has helped. Thanks for your support, Molly. |
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Hi, labbies Robin - everything that you described about your current night sleep pattern is similar to mine. At the worst of my labs I could not sleep flat at all because of dizziness, sometimes I walked back and forth in the house all night long and was absolutely exhausted in the morning. When I managed to get to sleep from a sleeping pill (Ambien) - it was short and indeed looked more like fainting. Often I would have weird and/or vivid dreams and I would wake up sweating with my heart pounding. Sometimes, often very early in the morning, I would get grave cold with terrible fear: Am I able to get out of the bed and walk? I am better with my night sleep now, but I still have to take the Ambien tablet. I tried to switch to Lunesta - but it did not work for me at all. Robin - what I really know about myself and many other inner ear disorders sufferers - GOOD NIGHT SLEEP IS ESSENTIAL for our recovery and everyday functioning. Night is the only time when our brain and all our senses can have full sufficient REST. Of course, if you have an additional possibility to have a nap during the day -it is great. Robin - when I had very bad night sleep - I also did not have any appetite and lost weight. Currently, on the contrary - I am eating very well and I have gained wieght, because I cannot exercise as I used to do. Molly - I have been taking Ginkgo Biloba and I have been improving slowly - in fact extremely slowly. It is really hard to say, what is working for me - just TIME and QUIET (I cannot tolerate sounds - many of them send me spinning) lifestyle - or Gingko Biloba taken on a regular basis. I think, that the COMPLEX of the above works for my improvement. By the way - Gingko Biloba was already mentioned as an "herbal remedy of choice" for chronic dizziness by a serious specialist in The Consumers Handbook on dizziness and vertigo (published in 2005, edited by Dennis Poe, MD) Anna |
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Hey Deus-- Let me know what they say or advise you - for MAV - if you ask.... I also get loads of headaches deeee |
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I don't so much get headaches as I do head pressure. Is this what you guys feel as well? Always worse at night and just like everythings shifting around in my head and bad pressure....and not that ache in the forhead like w/ regular headaches...but tighness all through my scalp. I can't wait to feel a clear head....I will be at one year the end of May. I have been putting so much stock in the year mark and that I need to be better by then...I need to realize that may not happen. Hope everyone is doing well! |
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Deeee, Deus (and everyone else)- There is a great site on Migraine Associated Vertigo run by a guy named Adam. I believe he posted here some, a very long time back. Anyway, the web address is: http:/www.mvertigo.org/ There you can find links to alot of very informative articles on MAV, as well as post questions, etc.. Most likely Adam will answer any questions you have, as he is very well informed on this subject, and very helpful as well. I have for the past several weeks been researching MAV, because my migraines intensified at the very same time I was told I had Labs, and I'm convinced there is somehow a connection. (By the way, although, I do get headaches, not ALL people do with migraine). My headaches are relatively minor compared to some of the other symptoms I experience.(many of which I was blaming on LABS.) Anyway, hope it helps. Kim |
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Yet another 'newby' joining the discussion - My name is Renee & I live in North Queensland in Australia. For me, the overwhelming fatigue is the worst symptom. I have a 2 year old son, and wanting to be there for him as I always have has been incredibly hard over the past few months. He goes to daycare every day, as I don't have the energy to care for him at home - and I desperately miss the 'mummy/son' interactions we had until the horrible illness struck. Like many of you, I dread going to bed at night, as I know I will wake continuously from vivid dreams and not be able to go back to sleep from about 4am....no wonder I feel so exhausted by 9am - I have already been awake for 5 hrs!!! Sometimes I lie in bed in the early hours of the morning, my body aching with fatigue and I desperately want to sleep - but just can't I have heard that tricyclic anti-depressant medication can assist the sleep cycle (not to mention the feelings of utter despair). Anyone had any luck with using anti-depressants to assist with sleep??? Mostly, I grieve for the dreams I had - my husband and I were trying for another baby when the illness struck, I had just gotten a promotion at work that I had to knock back (given I'm not even going to work at the moment it would have been very hard to justify the promotion :)), missing invaluable moments in my son's development because I am in bed desperately trying to get a bit of sleep to ward off the constant fatigue. I guess I now have to find some different dreams to work towards....maybe feeling well enough to even stay up long enough to have a 1/2 hour conversation with my husband when our son goes to sleep. I know my story is not special or unique, but - as you all know very well - it helps just to get it out. For that I thank you all. |
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Robin- you could be describing me! My symptoms are exactly the same.its also my second bout. My first was 2 years ago, This time it has lasted longer! I feel really depressed sometimes. its hard to not constantly wonder when the symptoms will go and you will get your life back. I havent been to work for 9 weeks now ( Im a teacher). I also have really vivid dreams and worry about bedtime as my dizzies are worse then. I do get headaches, but my complaint is more about pressure in the head and neck.My neck has also swollen slightly (poss glands). Has anyone else had this? I am being referred to a specialist, but I may go private due to stupidly long waiting lists! Renee- welcome! Konw exactly how you feel, although I dont have any children yet. That must be tough. How long have you suffered? I am in month 3. Have you been to a specialist yet? I too have terrible trouble with fatigue, along with terrible tinnitus and hearing loss, particularly in my left ear. I do feel somewhat possessed!!! I have been prescribed prochloperazine (stemetil) and although I dont want to rely on them, they do make you very drowsy, so I try to take them before bedtime. My only concern is that I dont want to have it as long as some of you guys have. I know that sounds selfish- I dont mean it to. Im desperate to go back to work and live my 'normal' life again. At the mo, walking to the local post box ( about 5 min walk) makes me feel sick and spinny!!! |
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hi everyone i just wanted to update you on my progress. i am feeling so much better now. i just went to another ent he said that labs only lasts for six weeks and that there is no way that this could go on for 3 years like i have it. i said thank you paid my copay and thought that he was so full of crap. i am done with doctors. i am truley convinced that they really dont know half of the stuff. however i read a book called natural cures they dont want you to know about and i found it very interesting. the guy is extremehowever i implemented some of the things he talks about and it made a huge difference. I went back to grapefruit juicing it really works but i have to mentally prepare myself to drink the stuff 2 times a day. its terrible it tastes gross, but it works. i also stared juicing 4 carrots 2 apples and 2 slices of ginger in the morning. in the afternoon i juice carrots celery parsley kale and a shot of wheat grass. the wheat grass is great it makes you go to the bathroom and it gets rid of all toxins. i stopped all meds not even an advil. i stopped using flouride toothpaste and drink 8 oz of distilled water everyday. this thing is almost gone i cant believe it even the anxiety its all gone. i also take 2000mg of vit c and 2 garlic pills a day. it made a huge difference. i walk a hour everyday and get a message once a month.i feel very stable i dont know if it has been 3 years and its finally going away or if the natural stuff helps. good luck read the book take from it what is possible for you to do if i wanted to do everything that he did i would need to live in a bottle but some of the stuff is really helpful. |
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Saw and ear specialist here in Austin. He confirmed that I have Labyrinthitis (which he described as damage to the inner ear). He also stated that I have Endolymphatic Hydrops (not Meniere's Disease). I don't know if anyone else has been diagnosed with this but he said that it's an imbalance of fluid in the inner ears that causes the "off" feeling. He also stated common symptoms are stuffy ears, tinnitus, imbalance, feeling like a vice is squeezing your head, vision problems, etc. He stated that it goes in cycles and that anxiety/depression is very common with this as well. He states that textbook says this will not go away, but he has seen numerous occasions where patients are able to function after. He prescribed me with a mild diuretic (to help drain the excess fluid), potassium pills (as the diuretic depletes it) and VRT exercises. He expects that I should be OK in several months. I can't help but thinking about what my department physician told me when I told her that I had an imbalance of fluid of the inner ear. She said "Aaawww, you're a baby." She said this because baby's have this and that is why when they start walking they fall and lose their balance easily. This kind of gave me hope because eventually, the child can balance themselves. My 1 year old is still having trouble but I guess that is why the docs say it could take up to 18 months for full recovery, that's about how long it takes a child to balance themselves fully. Just a thought. Blessings all. Matt, TX |
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SArah - Dont get too down. I have come thru this and so far no setbacks. I did find the Gravol "non drowsy" tablets worth trying as they do not make u drowsy or sleepy and no side effects. They are based on ginger which is a known anti nausea and movement corrector. Give em a try! U never know. IT will get better and u may never get it again. I am hopeful I will not but at least I will knwo there is hope for a full recovery even if it isnt after the first bout. Good luck! tim |
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Hi everyone I went to a balance self help group meeting last night which was set up by my neurotologist Mr Woods. So glad I made the effort (it was the first time I've been out in the evening for nearly 7 months). I was very nervous walking into a room full of dizzies (about 30 I guess) but everyone made me feel very welcome. Mr Woods was also there and gave a really good speech on labs/neuritis/BPPV/MAV, then mingled with the crowd and we were able to ask him all sorts of questions in a relaxed atmosphere. I'd been told this man went 'above and beyond' the call of duty and he sure did do that. We tended to sit in groups but moved around to join in others conversations. There were people there on crutches, still too wobbly to walk unaided but others were nearing the end of there ordeal. They were the ones I got the most inspiration from and they explained they'd been as bad as me!!! I'm struggling at the moment with the VRT and feeling terribly sick all the time. Mr Woods said I'm doing incredibly well and he expected me to feel like this, which is a GOOD thing. He's coming to my house tomorrow armed with lots more VRT exercises for me to add to those I'm already doing. He explained why I'm feeling so dreadful but promises the cotton wool feeling, pressure, pain and umpteen other problems will go as the VRT starts to 'kick in'. Seeing lots of people worse off than myself made me realise what a long way I've come since last October. I was really proud of myself and managed to stay the distance of 2 whole hours!! Remember everyone, you will recover. Frances |
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Hi, everyone Frances - this Dr. Woods and his group are AMAZING!!! You are lucky to have them in your hometown. Sometimes, I am ready to cry - alone in the whole world. I am trying hard to educate others (sometimes including the doctors!!!)about my condition. But, my God, I wish I could find somebody who would EDUCATE ME! Frances - keep us informed about your progress. Everybody - keep strong! Anna |
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Frances - what is Dr. Woods first name and what is the name of his clinic? Thanks, Anna |
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Beata, Thanks for the info. regarding natural remedies. I used to be a meat and potatoes man but I'm beginning to see the light. My wife and I are now strict vegetarians and have seen great improvement in our general health for having made the switch. We'll get a copy of the book you mentioned " Natural Cures They Don't Want You to Know About", by Kevin Trudeau, on our return to Canada (we're in Mexico) in about 6 weeks. I'm currently choking down grapefruit seed extract twice daily. I'm on day 5 and haven't noticed much so far but of course it's still way too early to see results. I found I had a hard time drifting off to sleep for a couple of nights when I started taking it. - side effect or random I can't say. I'm sleeping pretty well now though. |
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Anna His full name is Christopher Woods and he works at the Balance Clinic at Mayday Hospital in Croydon, Surrey. I'm seeing him today actually. He's got a lot more VRT exercises for me!! Things are quite difficult at the moment but at least I am now getting the encouragement to carry on with the exercises and improvement is a promise. Hope you are having a better day. Love Frances x |
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Tim- thanks for your helpful comments. You know how it is. you go from feeling confident that it will go, to thinking that you are cursed for life. Recently my symptoms have got worse again. Does anyone have any idea of how to treat tinnitus/ stuffly ears? Sarah |
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whats up with the dizzy lounge....its like you need to be a v.i.p to get in. |
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Hi everyone - I am continuing to check into this site every so often as it was SO helpful to me when I was in the thick of it. I was just as bad as many of you..I could hardly leave the hosue for two months..couldn't turn my head sideways in bed. Had to sleep on my back. The room spun, I was nauseas, dizzy, and a headache that didn't quit, my right ear was full. But all fo the sudden it began to lift...a would have one good day...and then two good days...and one day after about nine weeks I felt 95% better and I have stayed thatw ay. I know many of you will have it longer; some a lesser time. But just hold onto the knowledge that you WILL get better. Hope this helps. Thinking of you all... tim |
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Renee – I actually have been on a tri-cyclic antidepressant – amitriptylene (Elavil) in 1995 during the third outburst of my complicated inner ear disorder. Actually, it did not do anything to the dizziness, but it definitely reduced related to the dizziness headaches, anxiety and panics, and insomnia. It did not have any side effects for me. I quit taking Elavil by gradually reducing the dose – no side effects with quitting for me. During the current bout – I am taking one of serotonin inhibitors – SSRI’s – Paxil. I do not see any side effects and it works well for my headaches, anxiety, panics, and insomnia (not for dizziness, imbalance, or positional spinning). It is not a quick process of those medications to kick in – it takes time. To my mind – it is better to start earlier – they will HELP you to calm down, to have significantly less headaches, to sleep better: in other words - it will help to SURVIVE your terrible ordeal!!! Somebody asked about “The dizzylounge”. It has changed its appearance and some options. The nice lady in charge is Jill. I was a member before the changes. Somehow, I managed to get in the FORUM and even to post a new thread on the board (despite my poor computer skills). I have ordered Grapefruit Seed Extract from Nutri Biotic (4 oz bottle). I am going to give it a try on top of my usual long time Ginkgo Biloba. (Tom – I am watching your progress and I will inform you on mine). Beata – I am sure, that your fresh juices are BETTER, than any of dried leaves, or extracts. I really do not know what prevent all of us from doing the same - instead of swallowing ready pills. Maybe we are just lazy?!..... Deus – I remember that you were going to start working. How is it going? Matt, TX – I think, there is a big-big difference between babies and us – inner ear disorders victims. I remember my children when they were babies and had just started sitting and walking – they were HAPPY in their attempts of the new amazing activities and they were not much afraid of falling. We are definitely NOT like those babies – we are so FATIGUED, DEPRESSED and UNHAPPY while re-learning to do the simplest movements and tasks….. And we are in physical pain and psychological distress. Anna |
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Anna, look at your last e-mail on April 20th, you have helped SO MANY of us! I do wish that there was someone that could educate you, but I hope you know how much we appreciate your kind words and advice which helps keeps us going. God has definitely given you a gift for helping others make it through, I'm just sorry that your experience is the root of your knowledge. Beata, thanks for keeping us updated. It struck me when you said that you stopped taken all meds. When I first started this horrible journey, I had been taking sudafed, tylenol sinus, sniffed Afrin 3x a day, ibuprofen etc. (I have horrible sinus problems). The problem was I did this EVERYDAY. I resigned myself that no matter how difficult it was to stop all meds. for a month. I did, and the first time I got a miserable migraine headache a month and a half later, I took 2 generic over the counter migraine tablets and it was gone in a half hour!! Before it would take tons of medicine to get over a migraine. The point of my rambling is that, once you cleanse your body of all meds. and then take one dose of something, it becomes effective again. Take care, and continue to keep us updated. |
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Anna, You're right about pill-taking. Laziness is part of it but we're generally pretty conditioned to do the acceptible, the traditional; - at root it's whatever behaviour we consider to be the "fashionable" thing in any given situation. Popping pills is highly sanctioned behaviour and as in all other things it's monkey see, monkey do all the way. Juicers automatically look like 'wackos' with all their 'queer' ideas, ............ I'm sure you follow what I'm getting at. It looks to me like we all might benefit from thinking more 'outside the box'. I'm going to look a lot closer at the whole thing. I realise I don't actually KNOW much about alternate diets. Thanks all you thoughtful people. I appreciate you mega mega. Tom |
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I thought you might like to have some more info from Neurotologist after yesterday’s meeting. We sat chatting about all the friends I’ve made on this site and he was interested to know about you all and your experiences. He told me he has 25 new patients referred to him each week, just from his Health Authority alone and yet his clinic is frequently threatened with closure due to lack of funds and he has to constantly justify the need for his job!. He reckons the problem with most ENT specialists is the fact that they are just that, ear, nose AND throat and don’t specialise thoroughly is any one, hence, the lack of understanding. I gave him some questions and here are his answers which I diligently wrote down. I realise it’s like teaching grandma to suck eggs for some of the veterans and don’t wish to sound patronising. Best way to relieve pressure/full up feeling in the ear is to buy a proper steam inhaler that fits over the nose NOT a bowl and towel. Use eucalyptus oil or crystals but avoid anything that will aggrevate the follicles in the nose, due to the constant use. Don’t only use it when the ear pressure/full feeling is present. This procedure should be done every day for 1 month. Ginko Biloba can help relieve tinnitus (ringing in the ears) but will take between 4-6 weeks to work. Muscle and joint problems brought on by the loss of balance will benefit from Magnesium and B Complex as they help to repair the damaged nerves. Again, these will take between 4-6 weeks to work but will only aid recovery. Strange feelings in the body, i.e. pins and needles, tightness in muscles, hot and cold feelings in limbs are all due to the balance mechanism not working properly. Hopi candles can help if a middle ear infection is present but will not help inner ear problems. To relieve sickness buy sea bands and keep them on 24/7 whilst nausea is present. Once VRT starts to work it will abate but expect it to occur again when more challenging exercises are added to your programme. If flying, also wear sea bands and use steam inhaler night before flight. Don’t take any alcohol and if you have any, have just one Stematil before the flight. This won’t make you decompensate and will also help with the anxiety!!! Always make sure at least 5 mins of neck exercises and shoulder shrugging is done before any exercises. If palpitations are a problem keep ice cubes in the freezer and when the heart starts playing up put some in a glass of water and sip slowly. Avoid any deep tissue massages as this can aggrevate dizziness. Soft tissue massages are more soothing. Insist on getting a referral to a balance specialist as the longer it takes to get VRT the longer it will be before a complete recovery is made. It is highly unlikely (but not impossible) that viral labyrinthitis can be caught again because it is a virus that the body builds up an immunity to. The likely cause of a relapse is decompensation, usually due to extreme stress, i.e. house move, loss of loved one, change in job or other illness. The anxiety of ‘getting it again’ will make the next recovery harder and a vicious cycle occurs. Remember that the brain does make mistakes when we are fit and healthy, WITHOUT labyrinthitis, i.e. we have days when we are clumsy or can’t type without making spelling mistakes, we forget what we are about to say and we misplace things. When we should be sombre or silent we have uncontrollable giggles and words can come out of our mouths that we really don’t want to say!!! Therefore, it stands to reason that sometimes our brains have ‘off days’ after making a full recovery from labyrinthitis. This doesn’t mean you have it again and a few VRT exercises usually do the trick. An interesting fact is that in all the years he has been researching and treating patients with balance problems the statistics have remained the same: 70% women and 30% men. As the majority of women are 45+ it suggests a strong link with falling hormones due to the menopause. Likewise, women who are of menstruating years will find the symptoms worsen before and sometimes during their periods but it is not due to decompensation. Things usually calm down again once the period is over. (Important – once a full recovery is made there will be NO more problems). Finally, if 100% damage is done to both balance mechanisms a full recovery is STILL possible. I really do hope I’ve helped some of you. Love Frances xxx
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Anna Work is going surprisingly well,I find it occupies my mind and I dont think about being dizzy that much.In fact after my last relapse due to a cold...which im still getting rid off I have gone back to feeling 98% most of the time and one day 99%.I havent reached 100% yet due to a few visual problems and tiredness from work etc.However all in all Im doing quite well...maybe im coming to the end of it?? I even had 3 glasses of red wine on wednesday and woke up feeling fine!!Increadible. Well lets just see if it lasts until my next decomp Current time status: 8 1/2 months.Got labs on August 4 2005. And yes it does get better everyone! Anna I hope you are keeping well Deus |
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Anna, I agree with your comment and in no way was I trying to compare us to babies. I was simply pointing out that the condition is similar. Yes we are all fatigued,depressed & unhappy because we are trying to re-learn things that we were so capable of doing for so long and are now in a tailspin because our lives have been turned upside down and are at times afraid that it may never go back to normal. I empathize believe me. But like you said, your children were happy because they were learning new experiences, we are unhappy because we can't do what we did months, and for some, years ago and it is frustrating. I understand the physical pain and psycological distress, I'm there. I understand the concept of not knowing what today might bring, the anticipation of another panic attack, brought on by the room spinning, in which I'm afraid that I'll never see my family again for fear of dying. But those are things I'm working through and able to overcome. I was simply offering up a thought. Please believe me that in no way am I trying to downplay the situations we all face. The beautiful thing about what has happened to me, is that I have learned to appreciate certain things in my life more since this put me on my behind 6 months ago. Therefore I am grateful that I was able to experience this. Even though this has landed me in the ER twice, numerous doctor's offices and counseling, I am still grateful and will press on. I'm sure you know where my faith lies and where my joy & strength come from. Not by my strength, but His. With that, God Bless you all. Matt, TX PS: James 1:2-4,12 http://bibleresources.bible.com/passagesearchresults.php?passage1=James+1&version1=31 |
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hey frances thanks so much for writting all that it really helped infact i had an older ent on a flight one day he is now retired he said almost the same thing. Just when I was feeling very good i came home after my trip today I went on a short flight dallas to chicago i got off the plane and I thought I was going to pass out. But like the doctor said our bodies have bad days for me it's that time of the month and its really much worse and I have been up since 2am and home situation is very stressful now. I guess that explains it. It really does get worse with stress and hormones. you all feel goood |
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Hi everyone, I'mm a 34 year old male from uk..i've been diagnosed with labrynthitis recently by my doctor. My first feeling of it came on Good friday night about 4am...my whole bedoroom seemd to be spinning around me..i felt as i will wall off my bed.I've never been so frighttened in my whole life.It was also accompanied with nausia, vommitingand general dizziness and lack of balance throughout the whole day. I went to the hospital and was precscibed Stemetil which did seem to stop the vommiitng but the other symptoms have remained although not as iontense as before. I'm afraid of it causing permament damage to my hearing and general balancig ability etc. Is there anything else that i can do or take such as herbal or alternative therapies that would help?. I never want to go though this experience again..it was so frightening. At the moment i have some of the sypmtoms on a adaily basis but its worse at night and i find it hard to get any sleep..thank god the vertigo spinning seems to have gone.I hope someone can suggest some ideas of how to get myself back to normal. Thanks for reading this post. I'm sure it does help to know that that your not alone sufferign lke this. |
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dues hey! thats awesome that your doing well again. i know in the middle of a decomp its hard to keep your hopes up. i had a cold that made me feel spacey and weird all week and the last couple of days ive been playing football...running around with my brother and doing stuff i wish i could have done a couple months ago. i still feel weird on and off but for the most part im in good spirits. i guess the docs were right in saying.....it goes away....just takes time. never thought it would take this long. but its ok. hope you stay doing well i got mine on sept 18th 2005. its like a new holiday. i can't wait for my recovery holiday |
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Hello Everyone, I last posted in February, about 6 weeks after my Labyrinthitis began. At that time I was dizzy and had lost hearing in one ear. That same ear had tinnitus. Since then the dizziness has gone (thank goodness) but I still can't hear from one ear and the noise in that ear is like a water faucet turned on full force. My oto-neurotologist said that tests show damage to the nerves in the inner ear and the hearing may not return. Has anyone had a similar experience? I would really welcome any comments. Thanks, Lynn |
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Hi, dizzy friends Molly and others – Thank you. I am trying my best to help all the people who come on this webpage, because I UNDERSTAND completely how all of you are feeling. I have been passing the hardest way of pain, learning, frustration, depression, anxiety, disbelief, etc.etc. – for several times in my life. I was basically ALONE and very much ISOLATED during those hardest times. You can ask me – what about my family? To tell you the truth - I was fearful to tell them ALL I was going through – I spared their feelings – I always tried to HIDE (as much as I could!) my symptoms. There were no Internet support groups 34, 25, or even11 years ago. In 1995, when I first found VEDA (Vestibular Disorders Association) webpage on my computer, and they sent me for free their booklet “BALANCING ACT” and I read the short introduction under the title “What Is Happening To Me” – I cried, and cried, and cried. Tears were streaming down my face, I was sobbing and laughing at the same time (and I am not a person who cries easily). Because I found MYSELF described in the booklet!!!!! I learned then, that my trouble, my curse – IT HAS ITS NAME. There are others in the same boat! Since then I have had both BAD and GOOD periods, but I have never been ALONE. I have learned to explain my complicated condition, and I have learned to make others RESPECT my sufferings. I have always been extremely grateful to people around me for any kind words, or any support they offered. When I see somebody ill, alone, isolated, scared to death, with no help – my heart gets broken, as I imagine – it is ME being tortured…… Frances – so nice, that you have found your doctor. It’s a pity, that his practice can be closed or even diminished. A day WILL come when he WILL BE RECOGNISED. It is a GOOD doctor specializing in balance disorders in the USA – Dr.Rauch from Harvard Medical School. His webpage is: http://www.meei.harvard.edu/shared/oto/rauch.php It is another GOOD one in the USA – Dr. Timothy Hain from North Eastern University in Chicago. http://www.tchain.com/cv/hain-t.htm Shaukat – from herbal therapies the most helpful seems to be Ginkgo Biloba taken on a regular basis. It is not a magic pill, not an instant relief – but it helps many people with time. Also, magnesium supplement and vitamin B complex - on a regular basis. Some people found acupuncture helpful, they say it relaxes them and calm them down. Anything is worth trying. Start now! Lynn – you said, that your dizziness stopped – to my mind -it is the best thing that happened to you since the beginning of your illness. I really do not know much about fighting the tinnitus which can be very annoying, and of course, it sounds awful, that you lost your hearing on the affected ear. Have you tried a hearing aid prescribed by ENT, or audiology specialist? I know, that many people on the webpage The dizzylounge: http://thedizzylounge.com/thedizzy_forum/forumdisplay.php?s=&daysprune=&f=3 have hearing aids, that help their hearing while reducing the tinnitus. Matt, TX – mentally, you look very much prepared for surviving the disease. You found this STRENGTH within your mind and body. Let’s hope, that everything will turn out FINE….. Can you believe it, guys?! I can talk for almost 15 minutes on the phone at once!!! Half a year ago – I was dizzy in five, sometimes, in two minutes of talking and listening….. I will celebrate ANY PROGRESS, no matter how tiny it is….. As stubborn as always, Anna |
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Thanks for being so helpful Anna, i shall definitenatly be taking some herbal tablets and i've heard about Ginko biloba before a a good herb. Also acupunture possibly if i ca aford the treatment. I hope i never had to suffer any more pain from this condition. My hratt goes lut to all those who are suffering and espcially any new new pppl who maybe reading about it for the first time. take care guys and keep posting ...together we can help each other.
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Hello everyone, I've been doing a little better now that the weather has cleared up here in Washington State. At first I thought I was losing my mind along with my hearing but my Dr. said that pressure changes in the atmosphere can definitely cause symptoms to be worse. Lynn- My ENT said that my hearing tests revealed that I have complete sudden sensoneural hearing loss in my right ear and it is permanent. My ear buzzes 24-7 but I'm learning to ignore it. It will be 2 years in September since this happened. No hearing aid will help because the nerve was destroyed probably from the virus that caused my labs. I tried a unit that directed the sound to my left ear but it was horrible. There is a surgical procedure that involves screwing a titanium anchor in the bone behind your affected ear with some sort of transmitter attached to it and a receiver in your hearing ear. Alot of people seem to like it better but I'm having a problem with the thought of a screw sticking out my head for the rest of my life (I'm 49) not to mention that insurance will not cover the procedure and depending on where you live costs can be as high as 10,000.00 dollars. I guess one has to decide for themselves whether the hearing loss is worse than the procedure. At first I wanted it because I was having trouble adjusting to the "new" way I heard things or didn't hear them. Everything sounded different to me and I still struggle with figuring out where sounds are coming from unless I see what or who is making the sound. Even something as simple as crossing the street brings on anxiety. I don't drive anymore because of my dizziness and the hearing thing. I absolutely cannot do crowds. The roar is excruciating. Does any of this sound familiar to you? I'm still just dumbfounded by what happened to me. The thought that I had or caught something so violent that it actually destoyed an organ and I didn't even feel sick until several days after the fact is just mindboggling. Everyone take care. On your good days be all you can and on your bad days just be! Lauren in WA State |
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Has anybody here heard of or tried Equitab for vertigo. I accidently found their website just now. It is a mixture of Ginko, rhizome of ginger, kelp, & cayenne. Check it out and let me know what you think. I've not tried any herbals yet and I've been noticing that alot of you use them with some pretty good results. Lauren from Washington State |
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Lauren from Wash. State: I have never heard of Equitab. The following is what I found on their official website: "What Equitab™ Does For You You have to understand that Equitab™ is 100% natural and 100% unique. It is made from a precisely balanced blend of Ginkgo extracts, dried rhizome of ginger, kelp, and cayenne. This unique, all-natural Vertigo fighting formula works together to provide the you get the fastest relief from the terrible symptoms of Vertigo." So, basically it is a complex herbal remedy which combines Ginkgo with Ginger root and with two other things - kelp and cayenne. Looks okey to try. Lauren from Wash. State - crowds and noisy places like restaurants, shopping centers etc. make me literally vertigenious and vomiting. As I found out, that happens mostly because of sounds they provide. There is a scientific name for this problem: "Tullio's phenomenon". No cure, of course. All they suggest - to protect the ears with earplugs or earphones. I have been using Bose noise-cancelling earphones for about two years now. My unbeleivable sound sensitivity subsided a little bit in the past three months. I am considering this as a progress. Good luck Anna
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Hi again, Thank you Anna for looking into Equitab. I will order some and give it a try. I didn't know that the crowded places-noisy things issue had an actual name. See how informative you are! I think I can speak for others that when these weird symptoms actually have a name it is reassuring to know that the symptoms are real and not just a figure of the imagination. When I first went to the Dr. with the deafness thing I was treated as tho' I was some neurotic woman with nothing better to do than complain of a little plugged ear. Boy did SHE have to eat crow! Anyway enough about me. Thank you Anna for all your words of encouragement to so many of us out here. I wish I had your gift. I am always searching for new information and if I think I might have found something new or different I will be sure to share. All for now, Lauren in WA State rlbridges@localaccess.com (in case anybody would like to email) |
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LAUREN - Thanks so much for responding. My husband keeps telling me that I will get better but I have a gut feeling that the doctor is right and the nerve is destroyed. I'm so glad to know that someone else has the same symptoms -not that I'm happy that YOU are affected. Your symptoms certainly sound like mine, except for the dizziness. I, also, have difficulty knowing where sound is coming from and since I'm a teacher, this really presents a problem. I have real trouble understanding conversation when there is background noise and find myself cupping my good ear so I can understand. I'm reluctant to consider hearing aids since I'm managing pretty well. It's reassuring to know that even though I haven't the symptoms which others are writing about, that I'm not alone. Thanks, Lynn |
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Hi all Havent left a message for a while, but have been keeping up to date with you all. Over the past few days I have been feeling considerably better. The symptoms have not gone, but they are going through a good phase. Its hard though isnt it when the sypmtoms are so up and down. i dont want to be too optimistic incase I tempt fate! I do still have tinnitus and some dizzy spells. it has been 3 months- maybe its getting better?!! Anna- its good to hear that you are also improving. Is this still the case? To everyone else- my thought are with you all. Sarah x x x |
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Hi All - I sometimes check in and say hello and let people know that I am practically over it. And now I find out I have diverticulosis (inflamed pouches in the colon) and I think: how much more pain can I take??? But we all seem to have something to endure in life and I do believe it all gets better and makes us stronger and better people in the end. Keep optimistic.'''tim |
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Lynn- There may be hope for your hearing loss. My ENT said that the severity of vertigo (or lack of) along with SSHL is a telling factor in whether or not the deafness may be permanent. There is a Baylor University study that backs this up. As strange as it may sound, your hearing loss could return as suddenly as it left. This knowledge really upset me as I didn't experience vertigo until 4 days after my SSHL. My GP didn't treat me correctly as this is a "true medical emergency" and I did go to see her that day. Massive doses of predisone and bed rest is what should have taken place.( That Day!) I got the predisone, but too late. Don't give up hope that your hearing will return. I'm waiting for a miracle. Maybe you won't need one. Take Care, Lauren In WA State |
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Hi people, Thanks for your advice Anna. This is my second posting and i do apreciate all the help that peole are providing each other. I don't know if this is significat but i also suffer from social anxiety/phobia ..i would be curious to know if anyone else suffers from aneity disorders?. Since my initail lanbrynthitis onset things have improved but i do stil get a high pitched ringing in my ear and moments of dizzines during day and night. I ahve started accupunture sessions to help me with it and the immediate effectts are quite encouraging. My accupuntirist gives me a 10min massage to the prssure points aroud the head which seems to give a overall calmig effect and my dizziness is reduced styraight after the accupunture. I'm hoping to get Ginkgo biloba soon to. I'm so glad that worst syomtoms of this condtion seem to have gone for me. I do realise there are lots of you out ther who are still suffering so my thoughts go out to you. Hope you find things that work for you. take care and keep posting. - shaukat |
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tim thats good that your prety much over the dizziness. how long did it take for you? im sorry about your colon. if its not one thing...its another. |
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Hi, dizzyfighters Shaukat and everybody – Shaukat”s question about social phobia or other phobias. There was a scientific opinion as far as in 1980–s, that MANY different phobias are DUE TO MALFUNCTIONING OF THE INNER EAR SYSTEM!!!! I just finished reading a very interesting book written by a psychiatrist Dr. Levinson in 1986. The title of the book is “PHOBIA FREE “ - A Medical Breakthrough Linking 90% of All Phobias & Panic attacks to a Hidden Physical Problem (Includes Diagnosis and guidelines for you and your doctor). Guess what this Hidden Physical Problem is - of course, it is AN INNER EAR MALFUNCTION. I read the book with great interest. Thirty years ago, with my first bout of labs, I became so much AFRAID of crowds, noisy parties, big open spaces, big department stores, cars, buses, trams, just big city streets, that I did not leave my apartments for several months in a row. When I got over dizziness – all my phobias went away! During next bouts of my inner ear disorder all the fears and phobias came back. I KNEW ALL ALONG, that dizziness and vertigo come FIRST, and that anxiety, phobias, panics and depression are SECONDARY. When doctors and my own husband tried to convince me, that it was opposite, that I was “nervous, stressed, hysterical” and that “fears” made me dizzy – I became extremely frustrated and angry. I just did not have any proof at that point. Sarah – thank you for asking if I am still improving. I AM!!!! I am still doing better and improving extremely slowly – like my whole life is returning back to me – more energy, much better mood, can do more talking. Unsteady yet, slow while walking, “floating” when walking, dizzy in supine position and while turning to either side in the bed, still have to hide from loud noises. Resigned from my demanding and interesting job (still very frustrated about it!), got Social Security Disability benefits. Became calmer and stronger inside. Anna |
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Hello everyone, I've had lab. for almost 2 months now. First it lasted for one month and one week. I felt better, then on Easter Sunday morning it came back. I don't know if its from stress, because I am one of those who needs to please relatives, but feels like I'm never good enough for them. They are very judgemental. Does anybody know if stress can bring it back? Well, it is back and just as bad as the first time. People don't understand. They think you can carry on as you always have. There's weddings to attend, childrens school functions, and life in general. I don't know how to do these things, normally that is. And I can't seem to make people understand I can't function. I want to do all these things again. I'm feeling so left out. Everyone I know thinks its time to "just get over it". If only it were that easy. I'm going to try the grapefruit extract and the ginko. I'd do anyting to make this go away. I'm trying to get in to see this special therapist who deals with dizziness. Its a long waiting list. She's done this for 30 years and has only one patient she hasn't helped. I'm usually having a good outlook on things, but this is bad. |
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Hi - Thanks for asking about my dizziness. It lasted almost two months...all my symptoms lasted about two months until I finally felt sustained improvement and no relapses. I have now been over it for six weeks...and no relapses. Am praying that I don't get it again but I know the possibility exists. I feel for everyone here who is going thru it...I had Labs and BPPV...dont know which is worse. But I think the inability to turn my head in bed or sleep in any position but on my back was one of the most aggrivating aspects of the BPPV. It was HEAVEN when i was finally able to sleep on my side again! One thing that helped me was to force myself to go out for walks even when it was the LAST thing i felt like doing. But a doctor told me that keeping active and walking etc. forces the brain to adjust to the inner ear problem quicker. tim |
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Hi Kathy, Sorry to hear that you're struggling again. It's hard enough to deal with how crappy you feel and then to not have your relatives support yuo is over the top. I think I read somewhere in a previous post about a book that Veda has about this very thing. Anna- was it you that mentioned it? I looked over some of the past posts but can't seem to find it. Anyway, I think it was written to help people NOT suffering from a disease, disorder, or disability understand what an afflicted person goes through and how to be caring and supportive. And for those who still don't get it- Don't give them another thought--THEY'RE NOT WORTH THE EFFORT. I know that this is a hard thing to do when you're a people pleaser, (I'm the same way) Trying to do everything just right so that I'll be liked and accepted. I wonder how many of us out here in dizzyland are the same way. Maybe we push too hard to be better and delay compensation in the long run. Please keep us posted on the lady you're trying to get in to see. Tim, Sarah- It's great to hear that you're doing better. It gives us all hope that we will join you soon. Sorry about your "new" issue Tim. Anna- Thank you for all your words of encouragement. You definitely are our expert! Not that it's a title you wish to add to your resume' but we all appreciate your thoughtfullness and knowledge. Shaukat- Sorry about your anxiety issues and I totally understand. I don't go out in public much anymore. Noisy places are hard -makes my head feel like its going to puff up so big that it'll burst from the pressure. I also will stumble like a drunk. My mom chuckles when I do a little two step like my dad used to when he drank too much. I'm just trying to keep from falling over. I absolutely don't want others to see me do that-that's the stuff that brings on the anxiety for me. Lauren in WA State |
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Anna, I totally agree with your comments regarding anxiety and phobias. I'm into my 7th month now and have been doing VRT for just 5 weeks. It's horrendous and has thrown up all sorts of added problems. Before VRT I could actually go out alone and into shops but now I'm back to the panic attacks and fears of "what if something bad happens to me when I'm out" sort of feelings. My sister has asked us to her home for a meal tomorrow evening but the thought of it has been so frightening for me I've had to cancel. Strange that I don't feel so bad now I know I'm not going!!! This is a ridiculous thought as I love my sister and there wouldn't be anything stressful in our visit. I've been promised by my neuro-otologist that these thoughts and fears are perfectly normal when recovering from this illness and when the VRT finally starts to work I will be calmer. Still waiting for a dizzy free day as it's been 24/7 for the last 7 months. Hope you are all having a good day. It's beautiful here in Surrey, UK. At least the weather's trying to make me cheery. Frances x |
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Hi, everybody Lauren from WA state, Kathy and others. - We ALL (with almost no exclusions!) have difficulty explaning our family members, friends and people around us that we are REALLY SICK, because we usually DO NOT LOOK SICK! The booklet, that will definitely help others to understand what we are going through is called "But you LOOK good". It is only 48 pages. It is increadible!!! I found it very-very helpful. "But You LOOK Good" gets to the heart of why our friends and family members have difficulty with continuing illness and pain. It helps them to understand that even though a person with a chronic condition may LOOK good, it does not mean they FEEL good! Moreover, it gives them simple, pragmatic ways to truly be an encouragement, "What to say," "What not to say" and "Why," along with "How to help." Here is their website: http://www.myida.org/booklet.htm The author of the booklet is a victim of multiple sclerosis - an INVISIBLE ILLNESS when she LOOKS GOOD while FEELING HORRIBLE. I personally was very impressed by the booklet. I forced my husband to read the booklet in front of me - it is short and written very clearly, it goes straight to the point. I have noticed quite a difference in my husband's ATTITUDE towards my disorder. Anna |
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Hi everyone, I have noticed that quite a few people complain about pain in their head. Could you explain what you mean? Thanks, michele |
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Hi everyone I have just discovered your website and have found it so helpful.I was diagnosed with Labrynthitis 8 weeks ago, but I wasn't convinced that the Dr was right. I only had a little dizziness which Sercs put right, my problem is my hearing. I visited a nurse who told me I had wax in one ear and fluid behind the ear drum in the other. After a week of using olive oil, things seemed to be worse, so I visited the Dr again. Because my dizziness had gone, he said so had the Lab. but he has referred me to the ENT as he now thinks I have nerve deafness which means a hearing aid. None of this makes sense to me! I have had tinnitus for a number of years but now the noises in my ears are horrific, loud wooshing sounds! I thought the exhaust had blown on my car, because it was making two funny noises from different directions, but when I asked my daughter in law to listen to it, she said it was perfect!! So I don't think I am deaf, I am just hearing differently! I have been worrying thinking I was starting with senile dementia (I am 68) or maybe had a brain tumour, but now I have read everyones letters, I know I am not on my own. I also have the tiredness, which I put down to old age, but I have always had lots of stamina and have been able to push myself, now I can't. I am hoping in time this will improve. I am certainly going to try Gingho, but I have to go careful with certain medication as I am on blood pressure tablets.I even thought it was these that was causing the headaches. My head hurts when I cough or sneeze. Is this the norm?? I have never suffered with headaches in my life before, so I am finding it all very distressing. Good Luck to everyone Carole |
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Carole - I ahd NEVER suffered from headaches my entire life either before I got Labs/BPPV. So relax....find something which helps like codeine or soemthing. I thought I must be having a stroke...but the headaches turned out to be part of Labs. Also I have never been so tired in all my life. But it will get better. tim |
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Carole - During relapses of my inner ear disorder (labs/BPPV/Perilymph fistula, or whatever it is)I have all imaginable types of headaches - very severe agonizing migraine-like pain, terrible heaviness, vise-like aches, dull band-like pain, burning between the eyes and many others. I am always both very frustrated and angry how this illness is inventive to TORTURE my poor head. I am also so FATIGUED with this disorder, that I usually FEEL LIKE I AM 150 YEARS OLD during relapses. (In reality I am only 54 and normally very active and energetic being in remissions). Carole - this is not a stroke, not a tumor, not senile dementia is affecting you. This is how this cruel illness acts on its victims. Everybody - keep going Anna |
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I thought I had been feeling better... I thought it was ending.. Now I am back to where I was... Feeling terrible again for the last 10 days. I dont know what to do. |
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Sam - I understand your feeling completely - this bitter-bitter disappointment..... You ask - what to do... Not much of a choice.... Continue to GO ON with your life - whatever QUALITY it is right now.... Enjoy EVERY MOMENT when you feel a tiny bit better. Try to get through the bad periods. Women - cry, men - be angry and frustrated. It will be another day tomorrow.... Maybe, it will be better. Hugs, Anna
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Hi all, Just wondering what is meant by "brain fog". Also, I have seen quite a few people complain about head pain. Do you mean headaches, or some other type of head pain? Thanks, Michele |
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Sam- I completely know how you feel! I too was starting to feel considerably better, but now I have started to slip backwards as well. We have to try to remember that recovery from this illness is very up and down ( one step forwards 2 steps back springs to mind). Im sure, like me that your anxiety/ depression has increased again. I still have terrible tinnitus and dizzy spells. I am currently waiting for an appointment for an MRI. I have also been referred to an Occupational Health therapist through work. I have not been to work for 3 1/2 months now and as I am a teacher, this has been very hard for my poor students who are sitting their A levels in about 3 weeks. Has anyone else seen OH? My college has said that as this is my second bout in 2 years, they want to see how they can help me to stay healthy and at work! How long have you been suffering Sam? I really lost it yesterday and cried like a baby. Its hard to pick yourself up, but what other choice is there? Tim- was your recovery up and down too? How long did you feel tired for, or is this still an issue? On a positive note, I did drive my car to the doctors yesterday ( second time ive driven since feeling unwell). It just annoys me that I still have a slight heavy feeling in my head and it kind of pulsates, I also still feel very vague and am having trouble sleeping. im sure that stress/ anxiety is not helping with this. Are you still feeling good Tim? I hope so!! Sarah x x x x |
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Anna, Sarah... Thanks for the Kind words... I do hope this bad patch ends soon... Its been 11 Days Actually of dealing with this bad period, but This all started Last May.. .So its been about 1 year of dealing with this for me. I went for 8 Months without many breaks at all. Occassionally I would have the clearer day/evening.. then again back to the same old same old the next day. Anyway... I know this is up and down, but at times it is very hard emotionally to deal with the backward step taking while at the same time believing that to go forward, you have to go in reverse. All the same feelings of remorse, guilt, panic creep back in and its hard to say anything that will quell the urge to just give up. I empathize with everyone here... Its a terrible illness. Quick question about symptoms.. I started getting these headaches which only hurt when I exert myself.. jump, cough etc.... Anyone else experience that?? Sam |
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celien dions doctors told her that labs could last from weeks to up to a year. and you know her docs are the top ones. so anyone thats had this for months and months....theres always hope. it will pass. im on 7 months and doing much better than what i was but still feeling crappy through the day....just slowly getting back |
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Hi everyone, Hope hings are improvionmg for you people out there. I've not read all the posts that have beeen aded recenlty so forgive me if i'm not talking about the curent topics pppl have been posting about.This just an update on how i'm doing really. I'm contniuing with the weekly accupuncture sessions although its costing me alot of money. i think it seems to be helping with the general dizzines. today i went on a bus ride which seeemd quite difficult as i getting the feeling of travel sickness..i havent felt tlike that for a long time. I generally think m dizziness has reduced more but theer a moments i feel that it cuould come staright back even when i'm lying in bed. I'm also tryng to tackle my other issues of Social anxiety/phobia ..these are more persistent and i tend to avoid lost of places/situations where i may feel anxious. My hearing seems to have become more sensitive as i feel i can't tolerate much loud noises etc. I'm also taking some chinese herbal tablets which teh accupunctirst recommeded as well as ginkgo biloba..i think all of these herbal remedies are long term aids. i don't see any immediate effects form them ..i probabaly won't see them for quite a well..hopefully my health wil have a general improvement. The chinese herabl formulas are mainly to restore a balance between the various functions and organs of the body. The only thing is that it seems i'm forvever eating more and more pills. Anna mentioned the book which linked phobias to iner ear dysfunction. I think i did read that book a few years ago and i dentified with alot of the stuff regarding motion and sensory sensitivities etc .. .but i didn't know where to actually get any treatment for it locally and i didn't know that i was suffering from social phobia symptoms although i knew i had some sort of fear/phobia etc. anyway i think i have written enough . frances, anna and lauren hope things are going as well as they can for you. if anybody responded to my other posts and i have not replied personally ...forgive .its not been intentional ..i mustn't have read your reply. take care & keep posting. - shaukat
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Michelle- for me, brain fogs is when your brain just doesnt function properly. Its as if someone has injected you with a sleepy drug ( but they havent!!). I cant think straight and I often feel vacant. My head feels full up. Its as if I cant think through it. I dont know if this is any help. Its very hard to explain!! Head pain- this may differ for others, but for me its more of a heavy head. I do get headaches, but a heavy head is different. It feels as if there is alot of pressure inside your head ( with fullness felt in the ears). When I get a bad bout of this, my head gets very heavy at the back, including my neck sometimes and I have difficulty holding it up. I often have to lay down or rest my head on something. Sam- I just get normal headaches (verging on migraines), but I think Carole in an earlier post mentioned similar symptoms to yours. How are you feeling at the mo? I hope you are feeling slightly better. No change my end. Ive got to a bit of a plateu at the mo. No ups or downs but just constant!! I hope everyone else is ok - we can and will beat this horrible illness. Sarah x x x x x |
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Sarah/Sam I really feel for you both as I too am having a real down time at the moment. I'm 7 months into this now and the VRT is really taking it's toll on me. Symptoms are heightened and it's really difficult to function but I know it's the only way to get better. I had a real 'head rush' last week when I got up from a chair and then I fainted. Unfortunately I hit my head and shoulder quite badly which hasn't helped matters. That said, my balance specialist still thinks I'm making good progress and it is very much up and down as you describe. Hope you are both feeling better and not too anxious!!! Keep strong everyone. Frances x |
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hello everyone ive had this viral inner ear infection/labs for over 7 months. im starting to feel better. i can do so many things that i wasn't able to do before. i still feel off and alittle bad sometimes but its so much better than what it was. i hit every emotion through out this and still have anxiety over it with the what ifs and the am it ever going to go away? i did hear some updates on those sports people that had this a few years back....like the tennis player that had this for about a year and is now playing tennis again and celion deon is doing better (not sure if shes 100%) just that shes working anyways despite it. i wish i had that strength. anyways thats my update. hows eveyone else doing? |
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Friends, Here are Tai Chi balance exercises that a famous “Dizzy doctor” Timothy Hain from North Western University (Chicago) recommends to his patients: http://www.tchain.com/taichi/handout.pdf http://www.tchain.com/taichi/default.htm I found Tai Chi very helpful. My son-in-law when he comes to visit us two-three times a year always works as an instructor for me. Even after a few short sessions with him, my balance and my mood both improve. Frances – Sorry to hear about your fall. That is what I am quite afraid of. I know for SURE, that I get head spinning if I stand up too fast from laying or sitting position. I “almost fell”, or literally fell so many times that I have learned to move more slowly. On the days when I feel better – I can “speed up” a little. Frances – I am watching very attentively on your struggle and on your progress. Hope, that doctors are right, that you have to push yourself through exercises and very rough time in order to achieve faster and fuller recovery. Hold on! Tom, Beata – I am taking Grapefruit Seed Extract 15 drops a day. Just started a week ago. Way too early to notice any changes. Everybody – I got my Social Security Disability benefits starting December 2005. You definitely cannot become rich with such kind of income. My case will be reviewed in 5 to 7 years. It is not what I have ever expected from my life. For the time being my career of engineer and researcher is forgotten for an in definite time. I am trying everything to make my life as bearable as possible in my situation. Anna |
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Anna, Beata, and all, I'm still taking the G.S.E., 10 drops in a large glass of water, twice daily. ( 20 drops per day ) It's been about 3 weeks now. I agree with you Anna that it's probably way to early to tell. I've been feeling especially good for the past week or more, ( not a trace of ear-ache, which is very unusual for me and my balance has been as good as it ever gets since I've had this condition )however, I've become a pretty impartial observer of the state my body gets itself into and am going to reserve any joy- jumping 'till later. I had kind of set my sights on about the 6 week mark before I was going to draw any early, tentative conclusions. Like everybody else with this illness my symptoms have never been stable from month to month so it makes it hard to tell when some new factor you've introduced is REALLY having a positive, long term effect. Ginkgo I remember was like that. It seemed to take at least a month before any change was noticeable at all. Glad to here you're out there choking it down too Anna and I'm hoping we see some positive, long term results that might be of benifit to all. Fond Regards, Tom |
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Hi all, Just though I'd let you all in on my progress? (hahaha) It seems I may now have developed meniere's disease, according to my consultant, she has put me on some new medication which should be of some help if I do have meniere's, If the new stuff doesn't work then the meniere's is too advanced to do anything with or I have had a leakage of the fluid from my inner ear to my middle ear and not many doctors want to operate on that for fear of more serious damage apparently. I am still having the terrible drop attacks etc that come with meniere's and also had four bouts of labs in 2004 and all that goes with it, so I don't really know if my balance will ever be right because of having ops on both ears for mastoids too, so I have not got the facility for compensation that someone who has had healthy ears before labs etc would have. Going to see a vrt therapist next monday so maybe something will work, we'll see. But hey lets look on the bright side :o) I am still breathing and I dont have anything terminal as far as I know so there is always hope. Anyhow I wish all of you good health, good luck and hope you all get well very soon. Mick. |
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Frances- I hope you are ok. I really feel for you. This must have felt like a big set back for you. Im sure its still part of your recovery and that your accident is your brain trying to get used to the excercises. My neighbour had VRT about 2 years ago and went through a bad patch before she got better. She has been fine since with no relapses ( she had it for 9 months). I try and remember stories like this when I feel bad. I think it helps a bit!! Your message has helped me lift my spirits a little. I think its because you then remember that you are not alone and that others really can emphathise with you - thankyou to all of you!!!!! I dont know where I would be now without your help. I took some Nytol last night. I keep waking in the night and early in the morning. They did help but i still woke early. I know that some of that is anxiety - about my job, and when will it go away etc I did have a viral infection 2 years ago, but it went in 7 weeks. Ive had this virus for 13! ( not as long as some of you but still very fruatrating). Im not sure if I am improving. I have a very stiff neck and still feel spacey, have disequelibrium and tinnitus. Apart from that ( and the anxiety!) I seem to be ok. Havent had true spinning vertigo for about 3 weeks now. Is this an improvement? Anna- Im sorry that your career is on hold. You give so much to others on this site and I really hope from the bottom of my heart that things improve for you ( they will of course!). Thinking of you all sarah x x x x x |
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Anna - Thinking of you too. As Sarah said, you have given so much to us with your help and advice. This site made all the difference to me when I was having my episode. Sarah - Yes, my recovery was up and down. And gradually the symptoms subsided and I have been virtually free of them for two months now. As Anna will tell you, some people get it for a few weeks to a few months and then never again, and others, like herself, battle with it for years. You just have to hope you are in the first catagory. all the best to all - tim |
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Hi Everyone Just thought I would let you know, I must be one of the lucky ones, as I am feeling much better. I still have bad tinnitus, but if I turn the radio on, I seem to forget about it. I had a hearing test last week, and evidently I have nerve deafness in both ears, which apparently is due to old age! But, because the level of deafness is different in both ears I have to have a scan which makes me feel a bit nervous, thinking what if it is a tumour? I tell myself I would be in more pain if it was, so just have to think positive. I have been taking extra vitamin C which I think may have helped. My head only hurts now when I cough, laugh or bend over!! I still think my blood pressure tablets may have something to do with it, but the doctors say no, so who am I to argue? Thanks Tim for you comments, I take co-codomol, I have to go careful because of the blood pressure tablets,certain pain killers stop them working evidently. I hope everyone continues to improve as I seem to be doing, I am hoping it isn't just temporary Take care everyone Carole |
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Mick - I just read your post. I am so sorry to hear u may have Menieres Disease. When I was worried about my own situation, I saw a top neurologist and although it turned out I did not have Menieres, he reassured me at the time before testing that even if I did have it, there are medicines available to help treat the symptoms of that...and remember that many people who Do get Menieres often find that it too disappears almost completely in time. So you may be one of the lucky ones! Naturally this is not the case for everyone, but a good number will find that it goes away. I am no expert, obviously, but I just thought some of my own research answers might comfort those of you experiencing the terrible fear and panic of all the "what ifs" while you search for your own answers to what ails you. tim |
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its been 15 months for myself now...feeling pretty good......still get tired alittle and stilll spacey head feeling but i am about 90 percent...celine dion story she said weeks to a year.....celine doesnt know weeks to a few years..... |
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Hi, everyone Tim – thank you for thinking about me. Guess, whom I am thinking about most of the time now? It is our friends’ 26 year-old son Misha, who is fighting 4th degree lymphatic system cancer. The boy is now having a bone-marrow transplant after 4 rounds of chemotherapy. He has his website which he arranged for his friends and relatives to let everybody know how he is doing: http://www.bosin.net/misha/blog.html He and his family – our best friends - are going through hell. All I want to say – there are always someone who are in a worse situation, than our own selves. Switch your sorrow and grief from yourself to someone who needs these feelings even more. Suggest help even if it is just a calming and relaxing conversation…. Mick – Right you are! We are “still breathing”. Maybe our ears, or nerves in the head are damaged irreversibly. Our brain can still COMPENSATE for the damage with time. So, we all still have HOPE. Don’t we? Sarah – have you tried Ambien for sleep? I do not know about others, but it was a magic pill for me during the worst times of my inner ear disorder. . No drowsiness in the morning, no dry mouth, or any other side effects. At a certain point of time, when my anxiety sky rocketed, even Ambien quit working. I had to take Amytriptilin (Elavil) in 1995, or Paxil (Paroxetine) in 2004. Both worked well, although it took time for them to start working – a couple of weeks at least. I am still on 10 mg of Paxil daily. Not to mention a pill of Ambien at bedtime. I tried several times to quit, or reduce Ambien – but my insomnia set back. In 1995, I tried Effexor – it was a disaster – I though, that my head was going to blow out from the inside. Just want to say, that everybody has to find something that works for him/her. It is still TRIAL and ERROR process. Sarah – anybody who has had an inner ear disorder long enough would tell you, that a good night sleep makes a whole lot of difference in the way how you feel. If you can take naps during a day – great! Deep sleep is the ONLY time when your brain (it is always overloaded and over-stimulated because malfunctioning vestibular system) completely rests. I personally strive for every extra half-an-hour of sleep. I am very strict in this matter – I do not allow anybody to interrupt my sleep. I know absolutely for sure, that sleep is the best remedy for this illness. The more I sleep – the better I feel. I have worked hard (for months, actually) in order to EXPLAIN this to my family members and friends. During remittances of labs/BPPV/ fistula (who knows what else!) I used to sleep very little (5-6 hours was enough), and I used to be very energetic and active physically and mentally. Now I sleep 10-11 hours a day – my brain, my head just cry out for complete rest. Chad – I DO understand, that you feel so unhappy, like you are a failure being ill for SO LONG. Now people say – “Look, Celine Dion returned to perform despite of her labs – she is so strong!” I can immediately imagine what many people think about myself: “They (Celine Dion and Anna) have THE SAME illness. Anna, probably, does not push herself hard enough, or she is not strong enough morally - that is why she is ill for so long time.” Wrong! People just do not realize (unless it happened to themselves!), that what they think of THE SAME ILLNESS can be quite different in different people. The degree of dizziness and other symptoms may cause absolutely different degrees of disability which fluctuate considerably with time. What you CAN do or what you CANNOT DO has nothing to do with your “will power, or strength”. Chad, Chris, all – let me tell you what I think – WE ARE VERY STRONG PEOPLE if we CAN LIVE WITH IT and COPE WITH IT for so long. Anna |
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its been 9 months for me...also feeling pretty good...98% for a month now...still feel a little strange...BUT SO MUCH BETTER THAN BEFORE... Hoping to be normal by a year. and yes Celine Dion hasnt got a clue whats shes on for.... Deus |
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how do you know if you don't have menieres disease? |
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deus hey! so glad to hear you doing well. im doing well myself. after 7 months im starting to feel so much better. still off and still weird moments and times but like you said.....so much better than before. i do feel bad for celine dion. but good for her for going back to work. i wish i was that strong. i hope everyone is doing well |
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Hi again, Thank you tim and anna for the support, I am coping, as we all do, the best that I can, as I said things could be worse even if at times we don't think so, I explained the trouble with vertigo and balance problems to my consultant as your body's gyroscope being faulty or broken, after all that's virually what the labyirinth contains isn't it? the body's gyroscope. If only we could plug into the doctors, then they too would realise what we have to endure for most of the time, some of them seem to think it goes away when we have finished our appointment because they aren't there to see it. I think the best thing I ever did was to get married, my wife is brilliant, she gets me through all of this and more, always there whenever I need help, even if only to listen to me moan again :o) but when things are a little easier we have a laugh together and we are, and have always been, the very best of friends thank god. I'll get through this, whatever it may take and so will all of you too, DON'T GIVE IN TO IT !! Anyway enough for now, I wish you all health and happiness, take care all and good luck in everything you do. Mick. |
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How do you know if you have Menieres Disease? generally, there are four classic symptoms: Fluctuating hearing loss; tinnitus; sense of fullness in one or both ears; vertigo Generally, all four must be present for a diagnosis. Of course, you can have some of these and they will go away and it is NOT Menieres... Hope that helped whomever was asking the question. tim |
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Hi guys, I have been off the site for a few weeks and felt better but I see like others, I have had a few setbacks. Anna, that "floating feeling" when I walk I think is the absolute worst. It sounds weird, but I can almost tolerate most of the other symptoms except that. I'm sure the "worst" symptom differs among everyone. I have felt really bad in the last 3-4 days and I am wondering if the lack of vitamin C may be contributing to it. I am having an allergy skin test tomorrow and was told to stop all Vit. C supplements 3 days prior to the test. I typically take 1000 mg. a day (in addition to a multivitamin). Does anyone else take high doses of Vitamin C and felt better because of it? From what I understand 1000 mg isn't even that much. Some people take up to 2000 mg a day. And I am completely exhausted. As soon as I get home from work which is sitting in a chair all day, I immediately want to go to bed for the rest of the night. You all remain in my prayers, Molly |
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Hi everyone. I didn't want to post any negative comments as it's important you hear that things are improving. Hence the delay............ Well I do feel 'different'. I think the VRT is finally kicking in because when I get up in the morning everything around me is STILL. It's great that things aren't moving faster than I'm walking, if that makes sense? In fact it feels quite good until I do my first set of exercises then back it comes. I have to say though that last Sunday I was out with my husband and I had ONE WHOLE HOUR when I wasn't dizzy at all!! The feeling was so emotionally overwhelming and I really did feel like the 'old me' was returning. My left hand and leg wasn't so 'tight' when the dizziness subsided either, which just goes to show that it is all related after all!!! I'm not quite so anxious and I'm sleeping better, in fact I woke up at 7.30 this morning which makes me feel calmer. Maybe, just maybe I'm reaching that 'plateau' that Chris Wood (my balance specialist) talks about. I've been constantly dizzy for over 7 months now and only doing VRT for 7 weeks. I've been told it will take between 3-6 months before I am completely well again but with a steady improvement I'm hoping to return to my job on a part time basis (end July hopefully). I'm a busy Immigration Officer working at both the Heathrow International Airport and also Dover Port. I'll be desk bound until I finally beat this awful condition but I can see light at the end of a very long tunnel. I'll keep you all posted and hope you are all slowly improving, you all deserve a happy, dizzy free future. Love Frances x |
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Where is everybody? |
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Hi all Glad to see that some of you are starting to feel a little better. I am just coming through a bad patch of about 2 weeks. Woke up yesterday and felt alot better. Still have blocked ears/pressure/ tinnitus and some mild dizziness, but the anxiety appears to have lifted considerably. This is probably the nearest to normal I have felt in 3 1/2 months. Im not being too optimistic though as this illness usually lulls you into a false sense of security. Time will tell!I have an appointment with Occupational Health via work on Monday- I hope it goes well. I dont know why, but im a bit nervous about it. it would be good to be able to get back to work soon! I really want to be well enough to appreciate the world cup!!!! This illness is completely PANTS. Good health to all Sarah x x x x x x |
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Hi, guys I have just returned from a State Park where we rented a nice cabin with my husband for two nights. After an hour and a half riding on a state highway I was very tired but happy that I could handle it. Awesome! So peaceful, quiet, no grass mowers, very few people and cars. We went fishing on a little lake with no motor boats. I enjoyed life during these two days. Still with floating head (but not all the time!), still very slow and tired, I needed breaks and lay down very often - after two and a half years of my fifths bout of this disease. Life is still beautiful….. Molly – even very stubborn floating sensation very slowly and gradually with ups and downs – is subsiding. I think I have a chance of further getting better. And you all have good chances!!!! Frances – you have already enjoyed a dizzy-free hour. I bet this was one of the best moments of your life (we all understand it better than anybody). Frances – I also have a permit to work part-time without losing my Social Security Disability benefits. But to tell you the truth - I am so much afraid of getting worse from noise and stress at work (which already happened to me once in 2003-2004), that I will be resting at home until I get rid of ALL the symptoms. Heck with the career, social status, money, prestige – I was so SICK-SICK that none of the above was important to me any more…. Everybody – I am still taking Ginkgo Biloba and Grapefruit Seed Extract. Tom – how about you? Co- whoever you are. I, personally, will not quit this support group. I know too well how it feels - to be isolated from the whole world with this disease. Hugs, Anna |
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I LOOK AROUND THE WORLD AND SEE SO MANY PEOPLE WORSE OFF THAN ME EVEN THOUGH I SPIN AROUND STILL MY FEET ARE ON THE GROUND HOPING FOR THIS THING TO PASS TRYING TO FIND THE GREENER GRASS ONE DAY UP, THE NEXT DAY DOWN NEVER SMILING ALWAYS A FROWN I LOOK AT THE PEOPLE HELPING ME AND THANK GOD THAT THEY'RE HERE WHAT WOULD I DO I WONDER IF THE LOVE I NEED WASN'T THERE? LOOKING TO THE FUTURE WITH SOME CONCERN THE LOVE YOU GET EQUALS THE LOVE YOU EARN MANY THINGS ARE HERE TO TRY US BUT WHY DON'T SOME JUST GO BY US? CHIN UP AND FORWARD, FIGHT THE BEAST HOPE IS PROMISE AT THE LEAST TAKE THE BATTLE BREAK THE FEARS SO MUCH AGGRO FROM YOUR BLOODY EARS! |
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Co- whoever you are. I personally, will not quit this support group. I know too well how it feels - to be isolated from the whole world with this disease. Anna |
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hey everyone yesterday was 8 months. these last couple months have been alot easier than the ones before but im still feeling off. im doing better though. i even went on the swings with little problems yesterday. wouldn't have even thought of doing that a couple months ago. i started playing drums and though that is going to be good vrt cause of everything your doing. im not doing the vrt exercises anymore just walking and running and staying active and drums and im back to playing in my band and everything. i never thought it would take this long to get better but as long as it gets better i will be ok. i still have the fear of what if this never goes away. but i know deep down that it gets better and that i just need to get through this. hows everyone else doing. its nice to go back and read other posts from people who aren't here anymore and know that they got better. |
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Hi everyone - Anna, Im so glad to hear of your recent "holiday" from your woes. It must have been very restorative for you. I had a question for anyone who might know the answer or have experienced the same thing: I've been virtually over the Labs now for over two straight months. But two days ago I took a two hour commercial flight and when I got off the plane I was a little off-balance, dizzy and the motion of the taxi from the airport bothered me more than it has done since I had the illness. I thought - OH NO! Please dont say Ive got it back again! but within a few hours I was compeltely fine. And although I have had "hints" of the old troubles in the past two days sicne the flight, knock on wood "IT" has not come back with a vengence like I feared. Does anyone know if planes can cause symptoms to reappear? Ive read differering opinions on the subject of planes and altitude. Thanks.... Tim |
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Anna, Yes I'm still choking down the Grapefruit Seed Extract and will never stop taking Gingko as I've found that in my case it's very effective. I've been feeling very good for the last few weeks but it's hard to tell if the G.S.E. should take some credit for that or not. I'm pretty reluctant to jump to any conclusions too soon as my usual condition is a bit of a roller coaster ride with lots of ups and downs anyway. It's just as possible that I'm feeling less dizzy at the moment because of the heat down here in Mexico this time of year! I've seen some comments by people to the effect that hot weather makes their condition worse but in my case it is very much the opposite situation. It's partly for this reason that I spend most of each year in Mexico. Cold weather and winds always give me ear aches and I find down here I can walk around with my head uncovered without any problem. ( especially as the weather turns warmer at this time of year ) We'll be heading back to the west coast of Canada in about 2 weeks and that's when I'll have to start being very careful again. Do you find cold winds have an effect on your condition? If they do, I highly recommend the Tropical solution if it's a possibility at all. Anybody, do you find that a chill to the ears makes matters worse? Does swimming bring on a vertigo attack within a day or two? Nice to hear your still enjoying life Anna. Me too! It's amazing what the human spirit can and will rise above. Most paople don't have to carry this burden on through the years but even if you find it's dragging on and on it still shouldn't be a cause for panic. I've had really bad recurrent vertigo on and off for over 20 years but I found that after a few years I adjusted to the situation and things started looking brighter and brighter as time went by. I'm still always more or less dizzy but that I just take for granted at this point. When I discovered that Gingko made a BIG difference to the degree of that dizzyness (the constant state, NOT ACUTE VERTIGO attacks)I decided that life wasn't so bad after all. In most ways I would say I'm just as happy a person now as I was before all this started over 20 years ago. BUT, a much different, more philosophical sort of person. Kind regards to all, Tom |
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I agree Anna, getting yourself back to health is the most important thing in life. So glad you enjoyed a few days peace and tranquility when you went away with your husband. I'm looking forward to a break in the near future. If it's one thing I've really missed it's my holiday!!! We usually go to Greece in June but I know I'll have it to look forward to when I'm completely well. Take care. Love Frances x |
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tim how long did you have you inner ear problems? |
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Anna and Tom, I have started taking Grapefruit Seed Extract in capsule form for the past few days rather than do the drops in water. The one effect I've noticed is that I have to drink A LOT of water with them, because it gives me immediate heartburn! Do you experience that with the drops? I am still on the Ginko as well. I am finally experiencing what everyone on the post refer to as "up and down" days. Yesterday, I felt about 90%, the BEST I have felt in months! I even went to the gym and despite the exhaustion, felt great! It sounds silly, but I tried to stay awake as long as I could last night just so I could prolong the feeling good. Today, I am around 75%, but yesterday at least gives me hopes! Chris, I have been following your post closely, I am just over 7 months, so seeing your progress also makes me optimistic. Take care, Molly |
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hi guys , I read all the posts on this page nice to hear some of you are improving. I just wanted to give you an update on my progress. I don't think I ever felt better and stronger. It's been about 6 weeks for me where I did everything good for my body, It takes about six weeks to notice any difference. I don't know if you guys remember but I did the all natural thing. I have not taken one pill in about 2 months I also have not hade any caffine, sugar or white flour. I exercise everyday day of one hour hard cardio swimming running and biking along with a weight class. I feel great all my spinning is gone that off feeling is gone and all the anxiety is gone. I must tell you 4 weeks where the hardest weeks of my life. When I detoxed no caffine no sugar no white flour I had the shakes for three days night sweats heart palpatations the whole thing it was terrible. I do my grapefruit twice a day all natural fruits veggies the works. It's amazing your body does really heal . I hope things will be good for all i plan on enjoying my summer to the fullest |
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Molly - I do not have any problems with GSE - 20 drops mixed with 1/4 cup water plus 1/4 cup juice (any type of juice). Anna |
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Beata - I really cannot quite beleive what I have read about your amazing, majic healing from the dizziness. Sounds like a miracle. Anyway - it is worth trying for anybody. Even if a person feels healthy - with such lifestyle he/she should become stronger and healthier. I have a question - do you eat meat, chicken, fish? What about salt? (Maybe my personal love for salty food is something that makes me dizzier.....) Do you get your veggies and fruit from a "normal" supermarket? Anna |
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Francis - I think you asked me a question...not sure who exactly. I had all my symptoms for almost exactly two straight months...then they just faded and disappeared. Except for last week when I took a plane ride and I have felt a bit off balance and a tiny bit dizzy at times, as well as a bit of a headache. I asked if anyone knew if flying could bring on these symptoms again but I guess no one did as I got no answer. I am hoping this "episode" I am having is such that and not going to turn into anything...Please God! Fingers crossed. Tim |
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beata wow thats awesome for you! im going to try that too. how long did you have these problems? can i also ask what you did eat? i can definetly do the no caffine thing. the sugars might be hard but i can do it. did you eat no sugar at all? anyways....thats great your all better. |
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Molly, I'm taking 10 drops of G.S.E. in a medium size glass of water, twice a day. It's caused me no grief as far as heartburn is concerned but I can appreciate how it might have that effect on some people! The capsule form sounds like a good alternative for sure. Beata, thanks for the up-date on your condition. Very nice to hear that your doing so well. I've decided to drop coffee, sugar and white flour from my diet as well. I don't like the sound of the shakes and palpatations but I'll give it a try and see how it goes. I'll try for a bit more of a daily physical work-out too but I don't think I'll be able to handle quite the level you've taken on. I can't take a lot of violent shaking. Really appreciate your input and my wife and I are currently reading all we can about alternative diets. It should be interesting to see if there is much change in my case as well. Glad to hear so many are feeling better lately. Tom |
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Feeling nearly normal...leading a normal life at 98% most of the time...been a lot better last 2 months.IT DOES GET BETTER.Im not there 100% but I dont care cos I can enjoy myself again and drink booze! Deus |
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anna, tom I had this dizziness for 3 solid terrible years. anna I get my veggies from a regular fruit market if I see something organic that is there I will buy it otherwise no. I eat a lot of fish telapia and salmon at least 3 times a week with veggies and lots of garlic. Anna to answer your question about salt, no you need salt to keep the balance in your body the only time salt is bad is if you have meniers disease. that's when you need to eliminate all salt. I also eat barley , hummis I have great reciepis if you guys are interested i will pass them down. Tom when i started this i had no sugar at all for the first two weeks nothing at all if it tasted sweet and was man made I did not eat it. after two weeks I added just a little of splenda and now sugar however I think that splenda and artificial sugar is very bad for you. Now I do just honey if I have to. Tom exercise is so very important I know because when I did the tread mill I was so dizzy that when I got of I had to sit on the floor People looked at me like I was nuts. My suggestion swimming I now do 78 laps I started with 5. Now I do 5 miles on treadmill and do an hour of cycle class. Please note that when I do anything different by body is still dizzy. But because of the exercise I have no anxiety. I fly 85 hours a month I get up at 5:30 in the moring and go till 10:00pm it very important to get your sleep between 10and 2. I have so much more to share if you guys are interested it's been 3 very long years. Oh don't wory about the shakes and palpatations I had them for 3 days and on the third day I was going out of my mind I ran 5 miles came home went to bed and it was all over with. You have to release the adreneline. Good luck I will check the web more often to check on you guys. remember your body heals please please think good thoughts nothing else. strong mind and strong faith. |
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hey anna by the way I read your other post heat was terrible for me I remember i was in austin on a layover and everyone wanted to watch the bats come out well it was very hot between the hot and the bats sqweeking i though i was going to go the the crazy house. I also remember the cold air was terrible i would ski in the winter i neede to cover my ears or the wind i would go nuts. when i think back to all the things i could not do i thought i was loosing my mind. i remember being on a layover in minesota and getting up at two in the morning and went running because i thought i was going crazy. i never want to go back to that dark place again. Had i found this site way before i would have been so much better. |
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deus hey man! im glad your doing so much better. is there anything you did to make yourself get better? did you eat well or work out alot? |
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Chris I exercised a lot, everyday, between months 5 and 8.Im not sure if it helped, but probably.You just cant tell, maybe it is just time. The thing is I have never really had anxiety and forced myself to do everything and go everywhere despite how I feel.I find that working takes my mind of it loads. Dont get me wrong I can still feel pretty weird some days...but it has improved loads since month 6. My advice: dont dwell on it, keep moving, occupy yourself and enjoy yourself. Deus |
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Tim - you are concerned about airplane travel. As I understand, most of the people with inner ear disorders do just fine on a plane. In most cases airplane travel does not cause any major setbacks. There is a good article on this topic by Dr. Timothy Hain http://www.dizziness-and-balance.com/treatment/flying.html Look - Beata as I figured out is flying all the time and she has improved significantly by low-sugar diet, lots of vitamins and exercises. Of course, everybody's situation is different. For example, I cannot even imagine how I can come close to an airport because my sensitivity to motor sounds is outstanding. Airplanes flying above my head makes me dizzy and nauseated from the roaring motor sounds that they produce. That is the reason why I am extremely reluctant to fly. My problem - dizziness induced by sounds (scientifically it is called "Tullio's phenomenon") - has been gradually improving over the last two years. Still I am very far from feeling comfortable with sounds. I still hide from them and stay in quiet environment. SILENCE - that is all I need now.... Anna |
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Tom, to respond to your question about flying. Before I flew on a trip to Florida in February this year, most days I felt about 80-85%, pretty good, since I had felt horrible since this happened in October 2005. I actually felt fine on the flights, but when I came back home I immediately started feeling not only dizzy, but as if I had the mal de barquement sickness (that feeling of being on a boat and not being able to steady myself). It took about 2 months, just to get over that feeling. Personnally, I think it is just the pressure change and altitude that messes you up. Of course with Beata as a flight attendant, she could probably answer your question better. Thanks for the input on the GSE. Molly |
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Beata, please share recipes! Do you have a favorite cookbook? I know you're busy, but it would be a great help. Congratulations on feeling better! Molly |
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Just to say after 6 months of labs am much better, except for tinnitus. It seems excercise worked in my case and gingko. Am almost feeling normal! Anyone any tips on tinnitus which is bad just now? |
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Hey Rich, what's with the ads? |
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Those are trackback pings. Unlike with comments, there doesn't seem to be an option to screen pings. I have to remove them from the site by hand and I've been a little busy recently and so haven't found time to prune them. I will do so now. (I get hundreds of spam comments and pings each week. It's getting pretty annoying now - I spend much more time removing them than I do writing new articles.) |
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RICH - Sorry, that you have to deal with those spams and stupid ads. It takes your time and energy which you need in your everyday life for better purposes. RICH - I completely understand, that you keep this page because you suffered from labyrinthitis severely and you know exectly how it feels - HORRIBLE. Maybe, the people here would not be very offended if you close this page with reminding of other links on the problem of dizziness, vertigo, tinnitus, etc. Those who have been here for a short or for a long time can post and chat on other websites like those mentioned on the top of the page. RICH - in any case (whatever you decide about the page!) - THANK YOU greatly for doing such KIND thing for the people who are sick, frustrated and lonely. I think, that I have just expressed everybody's opinion. Haven't I? Your palfriend and fellow sufferer - Anna |
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Thank you so much to whoever keeps up this site and the folks who have posted so far. Knowing that I am not actually losing my mind is comforting! I have had all of the symptoms of Labs for the last 3 weeks, and have been to the ER as many times as well. Everytime I went they said it was just anxiety and perscribed me Xanax. It honestly helped for the first few days. I knew it had to be something more than anxiety though, and did my own research online. I showed the dec my peice of paper off the internet and he says "Oh yeah! Thats my guess as to what you have!".. asshole... He has no idea what it feels like to not be able to leave your house and be a vegitable on the couch for weeks at a time. Anyhow, they put me on meclezine, antibiotics, and anti-nausea pills. To be honest, the Xanax made me feel much bettercompared to these. I hope te end of this is in sight and I won't be afflicted for years. I dont think I can lat that long. signed.. just another DIZZY DENISON |
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Hi everyone - Is it my computer or is this site not updating as much as it once did? I seem to go days before I see any new posts. just curious. feeling pretty good here, Lab-wise. Thankfully. tim |
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Hi Anna, Even if I shut comments on the labyrinthitis pages, I'd still have to deal with comment spam on my various other pages here. Most of Sharp Blue is made up of my essays on various subjects and if I want to read people's comments on those - which I do! - then the problem will remain, alas. I think I'll have to investigate newer versions of the software with better spam filtering though. Today, I had a new record of 450 comment spams and trackbacks! |
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Hi, To you all with this terrible disease I share your compassion to try to support each other. I had no idea there was so many people afflicted with this set of symptoms. When I first came down with the first bout of Labrinthitis it was about 1995. In the middle of the night I turned over and immediately the room started spinning unlike ever before. I won't bore everyone with the details as I have heard the same symptoms from people who have posted here for the past 3 years with description to a "T". I will however mention that I never did get to sleep that night nor for the next two weeks. Every time I laid down the room was spinning and my head actually hurt. Like a motor that is spinning and you turn it to another direction. I am a Registered Nurse and I take call in an OR and I needed sleep in case I got called in for an emergency. Thankfully I never got called in during this time. Since I have access face to face with physicians I was frustrated to find that they don't have much for relief for this disease. I looked a Tabers and a few other texts for information and was frustrated by the lack of information printed. My bout lasted about 3 1/2 months with the last of the symptoms hanging on for about 9 months. Getting under the car to change oil was grueling. Before I forget I don't want to mention how grateful I am to the person that started this page. Now I don't feel so alone, but I do feel sorry that I can't help all the people with these terrible symptoms. (A nurses dilemna) I have run into two other people with very similar sympptoms. I am always looking for the "answer" to this disease. Some of the older texts mention taking Niacin to help improve the blood flow to the ear. One caveat however. Take time release Niacin or you will look like a Lobster and feel like one for about a half an hour. I don't know if the Niacin works as I am the only one I know that is taking it. Again read the directions on the bottle as Niacin overdosage can cause liver damage. We don't need that also. I am presently in my second bout with the labrinthitis for about 3 weeks now. I am again taking half of a time release niacin, meclezine, and some motrin at higher dosage levels to try to fight the symptoms. I swore that I would never go through it again but I can't do that. Some of the older texts also mentioned that many of the patients thought they were going "crazy" and some were even hospitalized. Some even ended the pain traumatically. I haven't read all the posts but I feel that they are all important as it shows the depth of this disease and similarity of symptoms for a cure or treatment. One item I discovered is the feeling of fear upon waking. What I call 'panic'. Sometimes I feel I have to get up and just run. It doen't make sense but I've seen the same discussion from other sufferers. One other item you might try. It is only half in jest. Dove chocolates. Can't hurt too bad and the endorphin release may actually help. I know that chocolate is implicated in migraine headaches so you have to use your own judgement on this one. Thank you all for listening to this rambling. I tried to simplify my experience to help compare symptomology and hopefully a cure. I could have gone on and on. Bless you all for sharing your experience. Hang in there. We all understand what you are going through as we've been through it too. Again Thank You Richard! Terry..... |
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Hi, everybody Thank you for sharing your experiences – Terry and P. To me – it is very sad, that so many people are affected with IT (I call IT- DIZZY MONSTER) Just to give you some inspiration. Here is a link to an article about Alicia Molik who is fighting the same disease and who is back to BIG TENNIS! http://sports.espn.go.com/sports/tennis/french06/news/story?id=2464695 Not everything is medically and scientifically true in the article (written by a journalist). On the other hand, what can be expected from journalists if doctors are often exactly “assholes” when dealing with IT? Anna |
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i like that article. really makes you feel better about having this. i thought i read before though that she got it in april 2005 and if her symptoms got better in march than thats 11 months but in the article it says 18 months. either way....shes doing great and we will do great too! |
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I am 62 and have had Labs since I was 30 years old. It has been a long process dealing with Doctor after Doctor and Specialist after Specialist with no results. I laid in an Emergancy Room for over two hours alone on a narrow cot because the nurse thought I was a druggy coming down. I have worked a fulltime job all of these years, having learned to deal with this dizzy life, but it is not easy. I currently have been fighting this for about three months now and am certain there is a break coming soon. |
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jls...30 years meaning no breaks? or that you had recuring labs where it comes and goes away but then comes back |
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Thank you so much for this site, it has stopped me feeling that I was going mad. My Doctor has signed me off work with Vertigo but I think what I have is Labs. She said that Labs is just a fancy name for vertigo, is this true? I have had the initial room spin but sice I have been on Betahiatine that has stopped and I have a continuous feeling of being on board ship. I have experienced the tingling and a numb feeling in my nose and lips as thogh I had had novacaine. They only last a few minutes but along with everything else are quite scary. My ENT appointment isnt until August, I dearly hope that I am much better by then. Good luck to everyone else on the site. |
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Hey Chris Are you better yet mate?Hows the dizziness?Lingering? Mine just seems to be lingering, not quite right but hopefully be ok in another 6 months! Chad you better? Had it for 10 months now...urghh Deus |
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just a update 16 months and back to a a somewhat normal life...still spacey head feeling and tremors when i get very tired but alot better than months ago....i would say about 90 percent |
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Hi, everybody jls - you said that you have been having this DIZZY Monster for 30 years on and off. How long are your "bad" (dizzy periods) and how long are your good (dizzy-free periods)? It is interesting from the scientific and statistical point of view how this horrible disease can have very-very different patterns. As for me - I am fighting now with a bunch of crooks from an insurance company who denied my long term disability claim. Their medical reviewer (this asshole is called Dr.!)made a decision that I am not disabled under their rules("We decided, that you can work 8 hours a day in your profession"). How do you like it?!!! He decided not even seeing me, not talking me on the phone and having 7 ohter doctors' reports showing my ongoing problem from 1995. Not to say, that in March 2005 I have been awarded benefits from Social Security Disability for 5-7 years without reviewing! They also establish surveillence over my house (to catch me doing something "violent", like dancing, mowing the grass or jogging) and are blackmailing me over the phone, that they saw me on this and that date "walking with my mother" and driving the car (3 times in two months to the doctors' appointments. Ha-ha-ha - my mother is 85 years old with arthritic legs - we walk grabbing each other by hands slowly as two old turtles. I drove a car 3 times in two months to the doctors' appointments 7 minutes drive when my husband was on a business trip. At first these crooks made me literally sick to my stomach. But then - I calmed down, thought a little and decided to stand for my rights. It is not about money any more - they made me INREADIBLY ANGRY! They are HUMILIATING SICK PEOPLE making their dirty business. I will think what I am going to do with a help of a lawyer. Although I do not have much respect to lawyers either but I better pay a lawyer, that let this insurance crooks go away laughing at my stupidity ("silly Russian with bad English"). I cannot do anything under stress, it sends me spins, imbalance, headaches, insonmia and exhaustion. I will contunue my fighting trying to spare my nerves and even to have some FUN from the whole situation. Tom - how is your GFE treatment? Frances - are your working at the time? Are you attending the support group in your town? Hugs to everybody Anna |
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I have had this for 2 1/2 years. I was diagnosed with vestibular neuronitis at Mayo clinic, Rochester, Minn. I tried contact lenses. They helped but something just wasn't right. I had glare problems at night. Recently had lasik surgery. Glare is gone, not 20/20, but a world of difference. Floresent lights no longer a problem. I think it's because the lights cast lousy shadows and you use shadows unconsciously for spatial orientation. I am convinced that optimal vision is crucial in the vestibular rehab program,especially peripherally. I'm 57 and wore bifocals. Not being able to see peripherally just didn't cut it. I can see perfectly in a fifteen foot radius which is where you take in visual information for balance especially at night. Hope this helps someone. |
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Anna, sorry to hear of your troubles with the insurance company. It is amazing how small and spineless some people can be. Can this 'Dr.' you refer to not find HONEST work somewhere in his chosen field? You asked about my G.S.E. experiences. Well, I just returned to Canada by car from Mexico and was in such good shape on the way that I did most of the driving myself! I stopped taking GSE a few days before we left as I thought the trial period had been more than adequate ( 2 months ). Yes, my balance was as good as it ever gets and whether that can be attributed to the mighty grapefruit or not is hard to say. How are you doing with it? Anyone else who was trying it? Unfortunately I caught a cold, (eating in a restaurant I think) on the way north and am pretty miserable with that at the moment. It's the first I've had since being in Canada last year and I'm hoping it doesn't lead to another attack of vertigo as these things have a habit of doing. My wife and I are introducing a lot of Beata's suggestions to our diet. The stack of books on the subject is growing daily! I plan to try juicing the WHOLE grapefruit as soon as possible. ( don't have a juicer as yet ) - Finding out lots of interesting stuff and I'm pretty enthusiastic about it all considering my head feels like it might explode at the moment!!! Rich, thanks for hanging in there with all that crap spam. I wish we could all pitch in and help you with it somehow. -Sure appreciate what you're doing. It must be REALLY ANNOYING to you. Jls, have you noticed any 'triggers' over the many years you've had the condition that might bring on your periodic attacks of vertigo? Kind regards, Tom |
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Hey all... I find that the most FUSTRATING, MIND_BENDING symptoms for me is the numbness/tingling in my right arm and slurred speech. When I read something or think to myself the words just slur in my mind, although I can say them perfectly. I am on my second attack in 2 months and I feel like I'm going crazy. Im 24 and was working at a moving company so I have no health insurance which has really screwed me. I'm going to Grady which is the free hospital in Atlanta and demanding an MRI and after that, Xanax. Xanax is the ONLY THING that helps me at all. Im at the stage right now where I cant cope with this by myself, as I'm afraid that I will just completely lose it. My entire social life is gone, and I have quit my band because the ringing in my ears was getting worse. I can feel this odd pressure/tingling INSDE my head on my left side, and that makes me anxious. Reading this message board and focusing on other stuff is the only thing that makes me feel better. Thanks for letting me get this out. I know ya'll understand! DIZZY DENISON |
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Just had a visit from Chris (my balance specialist, as I'm sure you're ALL aware by now!!!) and he's really pleased with my progress so far. Anyone new to this site, I'm 8 months into labyrinthitis/vestibular neuritis with a bit of BPPV thrown in for good measure, although that's under control now, thank goodness!! I've been doing VRT for 10 weeks now and there have been significant changes, especially over the past couple of weeks. The rocking/pushing/pulling feelings in my head have almost gone, only resurfacing on a bad day and the fullness in my left ear has subsided. I'm getting lucid times when the dizziness is going completely for an hour or two on odd occasions and the sickness is also better, most of the time with an odd blip!! I've got a much wider range of movements now that my neck is loosening up, so yes, Chris was very, very pleased with me. We talked about the eye problems I've been experiencing as I'm becoming more active but he assured me that's a good thing, effectively. Because the brain is finally concentrating on getting the balance right, in doing so the eyes tend to 'wander' or 'seem off', if you can understand that. Certainly nothing that a few eye focusing exercises won't put right in the long run. He gave me a good tip which seems better than holding something out and following it using your hand. Take the 2 jokers out of a pack of playing cards. Use blue tack to put them on a wall about 4 feet apart at eye level Stand between them and shift your gaze from one to the other without moving your head. Move the cards so that one is 12" above eye level and the other about 12" below. Shift your gaze from one to the other, without moving your head. Move one card so it's right in front of you at eye level. Focus on the print and turn your head from left to right as far as you can, without shifting your focus. Then focus on the print as you move your head as far up and as far down as you can, without shifting your focus. Do these exercises 5 times each. Anxiety has been a major issue for me along with panic attacks and major muscle spasms and tension in the joints. Chris has been teaching me, over the past few weeks to stop worrying about pushing myself too hard to do things that I find difficult. He maintains that it's not about forcing yourself to confront a difficult situation as it can exacerbate the feelings of anxiety and panic, thus causing further feelings of failure. I've wanted to go to the seaside for weeks now but felt too scared to do so. Chris told me to wait until I felt comfortable enough to just take a drive down to the sea and sit in the car. Don't go with the thought of getting out of the car because it would be too much to cope with. Instead, take some sandwiches and plan to just open the car door and people watch. If I felt happy enough to get out of the car, then that's a bonus. He assured me that in doing that, I wouldn't feel pressurised in any way. I have to say that it certainly worked for me. Paul and I went to Brighton last Sunday armed with sandwiches and drinks. I felt comfortable enough to get out of the car and take a walk down to the beach and have a sit. Then I was feeling more confident and we took a walk along the pier. Somehow I felt more in control because Chris said it was PERFECTLY normal to feel frightened and panicky when faced with certain situations. I'm really grateful to him for telling me that the anxiety/stress/panic, call it what you will, goes hand in hand with balance disorders and please, everyone, don't let your GP's tell you any differently. I'm going to stop rambling now 'cos I could go on and on, and on and................................... Frances xxx |
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francis hey! well thats awesome that your starting to do so well. after i read that your eyes being off is a good sign i was happy casue the last week or so my eyes have been really werid. its like things are moving kinda but they aren't. but weirdly enough im not anxious about it. the last couple months for me have been so much better. i do notice if im in a stressful situation i feel worse but other times i can feel normal. xanax for me is also the only thing that makes me feel better. i really hope this thing goes for all of us very very soon. just think one day soon we will all be the happy ones you see outside running around. this thing has to end sometime |
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Hi, everybody Dizzy Denison - I also completely forget words. All of a sudden I forgot the word interview (both in Russian and English!) I did know that it was "something to go to in order to get a job". But this word INTERVIEW completely disappeared from my poor brain. I asked my 85 year old mom and she immedieately gave me this word. I forget names of my closest friends! It happens mostly when I am tired or try to do something quickly. Many times I cannot tell what I ate in the morning for breakfast at noon the same day. I know exectly, that it is the part of any inner ear disorder and it will subside with other symptoms such as dizziness, vertigo, headaches, fatigue. But this "stupidity" is very embarassing. Anna |
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I have started having dizzy spells that keep me down for 2-3 days. I am taking medication as needed but still have a re-occurance too often. I am tired and unable to do much around the house. I am afraid to drive when I feel these unexplained feelings in my head. I need a doctor who treats this in Oklahoma. I have been told about a treatment that was used on a friend and she has never had any more trouble. My doctor thinks it is inner ear and I do have a problem with my left ear. I need to know who in Oklahoma treats this annoying problem. Thanks...D Stealey |
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Hi, D Stealey - I live in Oklahoma. My inner ear disease is so advanced, that I do not expect anything from any doctor any more. Just let the desease take it's natural course.... In year 2004 I visited a Balance Center in Oklahoma City and saw Dr. White. He seemed to me being quite knowleageble. You can probably find his advertising on the Internet. I know, that they have different diagnostic tests and Vestibular Rehabilitation Program.
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Hi everyone Firstly, thanks so much to Rich for providing a place that's evidently helping so many. As many others have said, reading through the comments and the support that people are so freely and generously giving is really helpful. I have a question for those poor souls who have had this longer than me (I am just approaching the four month mark), and it's to do with fatigue. I think I've been very lucky and not had it as seriously as some others in this forum. I've been trying to work again, but after a fairly disastrous start back at full-time, have slipped to part-time. This is my fourth week going part-time, and I'm not feeling any better, but in fact worse. I'm so desperately tired all the time, and as well as the physical symptoms I'm continuing to have problems with concentration and memory. My question is whether, from your experience, I should keep trying to keep going at this level and hope that tomorrow *will* be the day things start to improve (*g*), or whether by pushing when I'm so very tired, I'm actually being counter-productive. I have seen a GP who is fairly sympathetic, and who has referred me to a dizzy clinic, but the NHS being what it is, who knows when I'll get an appointment. |
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Tom, Beata and anybody who is taking grapefruit or GSE as a remedy - I found a good website on Grapefruit-drug in=teractions. It is important to be aware of such things: http://www.powernetdesign.com/grapefruit/ I am very slowly "compensating". I am very sleepy and tired all the time. Sound sensitivity has subsided significantly after almost two years of being TORTURED BY SOUNDS. Stress is my worst enemy - any time I am stressed with any bad, or even good (!!!) event -I am dizzy, my head hurts like hell, I cannot fall asleep, fatigued and I lie on the couch all day long looking in the seiling listless to everything around (like a vegetable). But my mood is much brighter now. I have my ups and dows. When I have a good (relatively!) day or even a good hour - I relish every tiny bit of it. LIFE IS SO GOOD!!!! Frances - the Balance specialist (Chris) of yours is a unique. I printed out your posts about him, his group meetings and about his attitude. I am going to show it to my ENT doctor, who is a good and an HONEST one. But of course, he does not the slightest idea how to HELP DIZZY PEOPLE. Frances - tell your Chris, that "a woman from Oklahoma will try to introduce his ideas of "handling" dizzy patients in her little town". Hugs to all Anna |
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Anna, - thanks for the lead to the "grapefruit site", I'll check it out. Jen, you asked about whether long-timers feel it's best to 'push yourself' when you're trying to recover. I've had recurring bouts of vertigo and all the other annoying symptoms for over 20 years and in the beginning tried very hard to exercise my way to health. I found in my case it certainly did not work. Once I began to relax and only allowed mild forms of exercise in the first days following the most severe vertigo, I found my over-all recovery time was shortened. Once I feel I'm over the very worst of it I begin to introduce more and more activity but I never allow for any 'violent' activity, as jarring movements ( along with exposure to cold )are a definite trigger with me. A lot of people seem to feel the problem should be attacked with WILL-POWER! I can't relate to that at all as it never helped me a bit. I listen very attentively to what my bod is trying to tell me these days. You could try taking it really easy for a couple of weeks, if you can arrange it, and see if that helps. Regards to all, Tom |
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Jen - from my experience you should STOP going at the same level of activity. TOO SOON. You will NOT get better tomorrow. If you continue to exhaust your brain and your body further you can end up flattened on the couch as you are pinned by a truck for many weeks. You said YOURSELF that you CANNOT work now. So you SHOULD NOT. You know - when I saw my ENT doctor last time - I said to him: "Doctor - the harder I push myself - the worse I become." I liked what he said: "Here is the trick. If you feel tired (not exhausted!) after just 20 feet - rest a lot - and next time do only 15 feet". I know, that Tom who dealt a lot with the condition can add something similar to my post. Tom - am I right? Anna
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I'm reassured that my posts are helping some of you. I'm always a bit concerned that I'm going on about my balance specialist too often but he always gives me sound advice and I'm well on the way to recovery. This morning I walked one mile to the shops on my own and did some shopping. My husband fetched me back by car after 30 minutes but it was a great achievement for me. I know I was making trips out before I embarked on the VRT programme but since doing VRT I've been inducing the symptoms, as you well know and it's been very difficult to get out and about. I can honestly say though, that now I'm receiving the right help and encouragement I'm making good progress. The true 'spinning vertigo' has now gone and I no longer have the sensitivity to loud noises, tinnitus, pressure in the ear, earache. The head rushes and feelings of fainting have also gone. I've learnt to 'chill out' more and not worry about the inability to do certain things at the moment. Chris has had the opposite approach to what so many of you seem to be experiencing with your own ENT specialists/GPs with regard to pushing yourselves harder and harder. This can cause the brain to actually 'switch off' and not be able to cope with too many mixed messages. This more leisurely approach has lessened the anxiety and panic which I know most of you suffer from. I'll keep you all updated and hope you are all feeling better as the weeks roll by. Frances xx |
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Hi everyone - Just want to wish everyone farewell. I appear to be over my labs etc. and so am gonna check out of this site - unless I get it again, of course. Which I hope I don't. Thank you to all who offered me advice while I was going through my ordeal. I cannot tell you how much it helped to be able to ask questions and hear back from others who were experiencing the same weird things happening to their bodies. Anna, a special thanks to you. I hope everything works out for you. Best wishes to all. And many many thanks again to those who offered assistance when I really needed it. Bye. Tim |
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Anna, Tom Thank you both so much - this advice is invaluable. I think I had begun to suspect on some level that I was not doing myself any good by continuing to push, but it's so helpful to have your experiences confirm this (though I'm very sorry you have had such bad experiences). I've decided to keep going as best I can for the rest of this week, which will enable me to set things up at work so I can sign myself off sick for most if not all of next week with a clear conscience, and hope to see some benefit. Again, thank you, and I hope you're both doing ok. |
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Tim - Buy, Tim. I hope IT will never happen to you again. There is a very good doctor in Harvard.He is a great lecturer and he explains vestibular pathology in simple and clear words in his videos. For better education one can have a look at and download his short but informative videos: http://www.meei.harvard.edu/shared/oto/rauch.php Anna |
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Hello Jen I guess you're in the UK as you mention the NHS!! A fantastic site is: http://labyrinthitissupport.org.uk/ I'm a team motivator on this site and you can interact with other sufferers and also talk in the chat room. Hopefully you will all give this site a try and gain some further knowledge. Almost all aspects of dizziness have been discussed and questions/answers are all categorised and easy to find. Hoping some of you will register. Love Frances xx |
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Frances, Thanks very much for the suggestion. To anyone else who hasn't yet been and had a look, I can certainly second Frances's recommendation. Jen |
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Hi All Been feeling pretty normal last couple of weeks.A bit starbge here and there but have a normal life.It does get better.I'm not fully there, but not sure if I will be feel fully 'normal' again, but am very happy with how I generally feel now. Have faith it does get better and dissapear Deus |
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hows everone feeling? dues? chad? anna? 9 months for me today woke up feeling off and out of it. hope it goes away |
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dues do you do VRT? or do you just stay active |
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Chris - thank you for asking how I am doing. I am doing BETTER, than a year ago, but still - very SLOW physically and mentally, dizzy spells, fatigue, sleepy like zombie. I am still fighting my insurance company (long term disability group insurance with my former employer). I suppose the fight will take a long time - I am not scared as I do not have anything to lose. Social Security Disability awarded me SSD benefits for 5 years (after 3 doctors reviews plus my 3 regular doctors. Everybody else - newcomers and "senior members" - keep on going! For the vast majority IT is becoming better as TIME goes. Anna
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is it normal to have affter effects of labs for over 9 months?? its been 9 months for me and im just now getting vrt in....i should have kept up with it |
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I havent done VRT for a while cos it doesnt make me dizzy- no pint doing it if it doesnt make you dizzy. I just keep fit, cycle etc. Deus |
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when people say for the vast majorty it goes away.....who are they referring to that it doesn't go away? |
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what are the tests to show an imbalance of fluid in the ears? |
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"what are the tests to show an imbalance of fluid in the ears?" Whoever asked that - I have never heard of such a test. Electronistagmogram (ENG), rotary chair test MAY show assymetry in responce from the left and the right side of your head. Those tests MIGHT indicate that something is wrong with your head (inner ears, cranial nerves, or brain). Maybe to your surprise - but I have to say (and HONEST doctors will say the same!): MANY BADLY DIZZY PEOPLE have absolutely NORMAL ENG, and even rotary chair tests. MRI and CTscans are normal in people with vestibular probles. Voluteers with NO SIGNS of dizziness can show ABNORMAL ENG response (those volunteers who have NEVER had dizziness or vertigo in their lives!). I have an article on such a reasearch made on more, than 100 people in 2005. I like FACTS - an those are THE FACTs! Furthermore - THERE ARE NO RELIABLE TESTS to show directly a vestibular problem in a person. Symptoms and history of complaints - that is all doctor should work with. Objective findings: wobbly gait, eyes jumping, hearing impairment can be PRESENT or ABSENT at the time of office visit. It does not mean that the patient in not ill! Everybody - KEEP the above said in mind. I do not want to sound PATRONISING. But beleive me - I have been dealing with the condition for more, than 30 years - it is really hard for some doctors, insurance companies, or even some stupid people to tell me all kinds of bu.... sh... about my condition. At times it is really difficult to stay cool when you hear: "It is all in your head", when you are as sick as a dog.... Excuse me for venting. With love from Oklahoma Anna |
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Hello everyone with Meniere's symptoms. I have had tinnitus for thirty years, been dizzy for twenty years, and noise and vibration sensitive for ten year. No deafness - the opposite, I can hear a pin drop at a thousand paces ! Meniere's is a crazy disease, whether it is initially diagnosed as labyrinthitis and goes away, moves in permanently even though very unwelcome, or progresses in old age to full blown Meniere's Disease with hearing loss and drop attacks. I am diagnosed with Meniere's Syndrome, as I am not deaf. Its easier for me to cope with psychologically; I am in the second half of my century, and was able to do things in my twenties and thirties (passenger in an open microlight with an airforce test pilot) that I could not do now. Anyone young and going through Meniere's - you have my deepest sympathy. It is tough. I get my information in the UK from the Meniere's Association and their newsletter 'Spin'. A few observations from my experience, which may not apply to everyone else's experience: Don't use valuable energy (and money) looking for a cure - some things work for some people and not for others. Balance and vision exercises help for those whose condition is helped by such regimes; if it does not work for you after a reasonable time, that means your version of Meniere's works differently, not that you are doing it wrong. Meniere's is complex, and is more of an umbrella term for many different symptoms and causes, than a closely defined disease with a predictable outcome. More information on this from the Meniere's Association. Keep in touch with your doctor, and make sure everything is documented, for proof for employers, insurers, sick pay if necessary and benefits claims. If your primary care physician (GP) is not helpful and supportive, change, ditto with ENT. You are the expert in your experience of your condition. Don't be afraid of being labelled disabled: it is the passport to getting necessary help to manage; medically, financially, practically. If you need help - ask for it. |
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how is everyone feeling? |
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Hello everyone I've done a very stupid thing which I hope none of you will do!! Because I'm making a steady recovery I thought I'd step up the VRT by using a dustpan and brush instead of a vacuum cleaner on the carpets. Oh dear, I'm really paying the price for my stupidity and realising I'm not as well as I'd hoped. It brought on some horrendous symptoms including sickness, tinnitus, earache and feelings of being on a boat in an incredible storm. This happened on Monday and today (Wednesday) I'm still suffering but it is slowly subsiding. I phoned Chris Wood (my balance therapist) and he said because I tried to over exert my brain and it couldn't cope with all the mixed messages it was receiving from both the good and damaged ears, therefore, it could only shut down completely. I knew it had shut down because it even affected my speech and concentration. I've got to forget VRT for a few days and rest. I've learnt a very hard lesson. I hope you're all doing better than me at the moment. Anna, keep fighting, you'll get there in the end my friend. Frances xx |
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There must be a God because of this site I found today. I have not been sick for years (and that includes colds, stomach virus, etc.). Yes, I have been blessed. Well on June 6 I turned my head in bed and the whole room spun. Scared me to death. Thought I might be having a stroke. BTW I am 46. I had nausea with and without the vertigo but not to the point of vomiting. As the days progressed, I started to feel ill like a virus or bacteria was all in me. My pits started to drip and folks it takes 30 minutes on a treadmill before I break a sweat. I was so lethargic too. My neck felt very full as well as my ear. The vertigo was relative to the fullness in my neck. When the fullness went into my chest I went to the ER. I was diagnosed there with viral labyrinthitis. Just like that. I also went to an ENT who diagnosed me with benign peroxysmal positional vertigo (I had the positive hallpike test with nystagmus). I have no doubt that the VL caused the BPPV. My brain MRI was negative as well as was my initial bloodwork (CBC) which of course is good. The dizziness seems to be subsiding some but I fatigue so easily. I also had facial numbness. Did anybody have that? Here I go thinking stroke again. I am an occupational therapist who has worked many years with stroke patients so of course I am scared. And by the way, I cannot work right now either. One of my main concerns is this bad feeling in my neck. It seems that my lymph nodes are swollen (I guess that would make sense if it is viral) and I even feel tightness and fullness when I lower my chin to my chest and when I swallow. Did any of you poor folks have these neck symptoms? I feel like a whiney baby because I know so many people in this world have horrible, horrible diseases and bad things happening to them. Like all of you the anxiety is tough. Please feel free to comment. I wish you all the best. This site has helped me more than the doctors that make you feel like you're overreacting (because all the stupid tests are negative) and you can tell they are patronizing you. Thanks to you all. |
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Also I forgot to add this. Does anyone think they could have gotten their VL from a mosquito bite. I was bitten a couple days before symptoms started by a weird knat looking bug (it hurt) and a mosquito. Just wondering. They carry so many viruses it would make sense to me. Meg |
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Hi, all who are dizzy Sally - All the observations from YOUR long-time experience can be FULLY applied to MY own long-time experience (34 years with dizziness - relapses/remissions). I was quite surprised, that now Menieres is diagnosed when there is no hearing loss, but opposite - when a patient has increadible sound sensitivity.... My sound sensitivity has been so intense - I have been waring Bose noise-cancelling earphones for more, than two years now. I still CRY from sounds of lawnmowers in the neighborhood. They send me spins and nausea.... This illness is so wierd, inexplanable, crazy, cruel, unpredictable.... NO clear prognosis... NO treatment - (very sad fact). But still.... on a good side of it....I am very slowly, gradually, with ups and downs have been recovering from the fifths major relapse in my life. I am still fa-a-ar away from being a NORMAL person (maybe, I will not return to a NORMAL condition ever....). But when I look back at the worst of IT (for five months in 2004 and for six months in 2005 I was practically bedridden with constant dizziness and excruciating, often agonizing headaches, I worked as an engineer and researcher in between beeing bedridden - it was HORROR!) - I am sometimes amazed by my own self - HOW COULD I GO THROUGH THIS EVERYDAY, EVERYMOMENT TORTURE? Why do people become so STOIC when they are so ill? Is it hope, that keeps us going? Or what?... Frances - thank for your support - it is one of the the most important things in our struggle with the disease. Sorry for your set back. Of course, you OVERDID, OVERLOADED yourself with VRT. Happens all the time with different people. It happened to myself so many times - I have lost count. I am sure, that your VRT specialist Chris told you about possible "overdoing" (he is smart - bless his heart!). You are not "stupid", of course, NOBODY CAN know IN ADVANCE what is just right for him or her at a certain moment and at a certain level of your recovery. How is everybody? Anybody is doing better? Any good news? Hugs, Anna |
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hey everyone! im just over nine months of this and where i still feel off....not all the time...but still every so often....im so much better than what i was. im doing so much more these days than i was even a few months ago. i hope this ends soon! hows everyone else doing? anna....have you gotten a dx this time? it seems like this last bout is diffrent from the others |
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hey, how come my posts wont show up??? |
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HAvent been to this site for a while. I think I tried to completely detach myself from anything linked to VL! Sorry to still see that some of you are still suffering. I thuoght mine was going away but unfortunately not! Seeing a specialist called Ingya Vanniasagaram who is brilliant. I have been doing VRT for about a month now ( In month 5 of this bout). Initially I felt better (almost normal at times), but after the first week of doing them I have now got steadily worse. Dr. V has now suggested a small dose of antidepressants to help control the lows. He feels that the stress caused by the frustration etc is actually making the symptoms worse- I,ll give anthing a try now. He was angry with my GP for giving me Stemetil for over 2 months. As others on this site have mentioned, he said that this could have made things worse. Brain Scan and ear pressure tests have come back normal (as expected). trying to be as active a poss and keep up with the VRT (as directed). Hopefully I will see some positive improvements soon!! Love to all sarah x x x x x |
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Hi everyone, I’m so glad you all take time to share your experiences with this awful IT, it’s made me feel like less of an alien now. After reading your posts, I just know this is an inner ear deal. I started out with two ear infections and a cold, on antibiotics for three weeks and still waiting to get better. I’m on 5 months of dizzy, nausea, vison/focus problems, ear pain – like someone attached lead sinkers to the inside of my ears and its pulling down the sides of my neck, thick headed, neck pain, ears pop/crack still but not as much. I can’t walk and look around, I must stay very focused in one direction. Initially I saw rainbows and had double vision with the dizzy, thought it was a stroke, called 911 – hospital looked in my ears, gave me antivert and sent me home. I’ve not been diagnosed with anything, cat scan good, mri good. I see a neurologist on the 13th. I’ve dealt with fibromyalgia for years and I think the ear doctor quit listening to me as soon as he read that, on the first visit he decided NO way was it inner ear (before any tests) referred to the fibro three times – that we have mock pain and recommended a shrink. Like to tell him where he can put his mock pain. I saw an eye doc and have glasses now, already did have them but haven’t worn them for 24yrs because my vision isn’t that bad, adjusting to the new ‘eyes’ was extremely difficult. I stopped my meds for fibro thinking that was aggravating it so I just suffered. Didn’t seem to matter so I’ve started them again, I really need the ambien or I won’t sleep. I still can’t drive, but yesterday I felt well enough I asked mom to take me to the store for a bit, I was exhausted after that short trip and now today I feel like I’m going backwards in progress. It was my first time out that wasn’t going to a doc. Appt now I feel like I’ll be stuck at home forever. I’m 42 and it feels hopeless today, I don’t think I could do this all my life like some of you are – my heart truly goes out to you. Today I just want to cry all day and go back to bed until this is over. I hope you all are getting better, most of you have been dealing with this much longer than me. |
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Chris - thank you for asking about my DX this time. My fifths bout - the longest so far - as I strongly suspect, is due to a severe perilymph fistula on the left side. ALL the symptoms (including SEVERE sound sensitivity, extreme weather changes sensitivity, severe localized left side head pain) indicate to this problem. I corresponded with a famous "Dizzy" Dr. Timothy Hain from Chicago and he said that some of my symptoms are REALLY those of a possible PLF. NOBODY can tell for sure. There are NO tests to confir this diagnosis except DIRECT observation of a tear (fistula) in the perilymph membrane. This direct observation can be done through penetrating the timpanic membrane in the left ear. That can make a person DEAF on top of being dizzy and vertigenious. Besides, there are NO reliable surgical procedure to REPAIR a perylymph fistula. All possible patches fall off quite often. On the INTERNET I HAVE NOT FOUND a single person whose perilymph fistula patching had been done successfully. Besides, there is quite a big risk of having a permanent damage to one of the cranial nerves (any of your body functions can be affected in this case), of facial paralysis and even dying. How about that? My local ENT doctor (an honest one!) advised me NOT allow to operate on the inner ear unless it is absolutely, totally unavoidable (if, for example, it is a benign and fast growing or malignant tumour). I do not have a tumour, thanks God. Anyone of you can ask - DOES THIS POOR ANNA HAVE any hope to become better? I think that I DO HAVE this hope. Back in 1995 (my third bout of the vestibular disorder) I also HAD some SPECIFIC symptoms of PLF also on the left side. Only the duration of the symptoms was shorter (for about a year and a half - the whole episode) in comparison with the current bout wich has been lasting for more, than two years and a half. I recovered from the third bout to about 95-98%, some days even to 100%!!! As I figured out and what doctors say - in case of PLF you should RESTRICT (for apparent reasons!) shaking and vibrating of your head, blowing your nose, jumping, bending over and other activities which can INREASE intracranial pressure. With resticting such activities you have a chance that this tear, or hole will HEAL NATURALLY. And that is my hope. As I undersatand from my research, some doctors opinions (I trust only very few of them) and support group members responses - the DX of PLF is always quite CONTROVERSIAL, it is not done by doctors very often. In many cases patients suffer much longer, than in case of pure labirynthitis. Anyway - I am doing better, than a year ago, so I am not so desperate as to jump on a surgical table. Under NO circamstances! Excuse me for possible mistakes in grammer or misspellings. I think, that I made my point clear. Chris and others - Australian tennis player Alicia Molic made an appearance in Wimbledon (after 18-20 months of her bout of labirynthitis). Isn't it a good news? Anna |
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Megan - many people who have any type of vestibular disorder are worried, that they might have a stroke. For example, tingling or numbness on the face and arms can be scary. Many people with labyrinthitis, BPPV or menieres complain of this tingling and numbness, or even slurred speach and short memory loss at times. I, personally have or had all the above mentioned troubles. They disappear or subside gradually with time. What time.... that is not clear from the beginning of the illness. Weeks, months, or years... Sad truth... Megan- let's hope your case will be of short duration. I will keep my fingers crossed for you and other people on this site. Anna |
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Anna, you asked how everyone was? I thought I posted a few comments a few days ago but I don't see them posted. So, I'll just say ---" could be a lot worse" and leave it at that for now. .........more later, Tom. |
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They say VL is not contagious but I don't believe them one bit. How can a virus not be contagious? My mother had it for two weeks, then my sister had an ear infection and now I have it. I started having symptoms on June 30th. It was only a small dizzy spell. I went to dinner and was fine. The next morning I awoke and to my horror, the whole world was spinning. It was as if I drank too much Jack Daniels. I couldn't stand up and my fiancé had to hold me just to get me into the bathroom. It was terrible! The next day I felt a little better but could still feel the room spin when I moved my head. The following day (yesterday), I woke up with the spins all most as bad as the first day. Today I don't feel anything much. I'm not dizzy but maybe slightly "off" from my normal self. The first day I took Dramamine which did absolutely nothing except put me to sleep for a few hours. I also took Alavert which is an over the counter antihistamine that is supposed to dry up your sinuses and inner ear. This seems to help after a few days of taking it. You only take one every 24 hours and it melts in your mouth. It's kind of disgusting tasting but it's bearable. I can say that decreasing my sugar, salt and caffeine did seem to help. Also, try to just do small things and then go sit down again. I should mention that I did have this once before but it wasn't as bad the last time. It's a hell of a virus! It really knocks the living crap out of you. I wish you all the best and hope that your symptoms go away quickly. |
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Hey all, okay so i had posted on this site too and I don't see my post up. Anywho i'm glad i found this site. Its really given me hope! I'm only 20 and have been suffering from this terrible feeling for almost a year now. It all started in april 2005 when i woke up to the room spinning. And as you all know this feeling was hell, after that (knock on wood and thank god) i have not had that again. However, the past couple months have been really bad as my balance is totally off. I feel like i'm walking on an uneven ground and at times it feels as though the ground is really bumpy! Do anyof you feel this? I can manage to walk for a bit but then have to sit down after a few short steps becuse i feel like i will fall. I've seen 3 ENTS, and have another appointment tomoro - he's going to perform the manuver on me again, hopefully it'll go better this time and won't spin the hell out of me. I had an MRI done which came up negative. So all in all, its been a hell of a ride! I so know how you all are feeling and we surely will get through this! :) Thinking Positively. Farah :) |
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Hi folkies, sorry to hear that so many of you are still suffering so much, these ear things can be damn hard work eh? I see a lot of you, like me, are getting a bit down, do your best and have faith, not in the doctors but in yourself, you are still coming to this site and communicating with others in the same boat, that in itself is a good sign that you haven't given in. chin up folks, chest out and best foot forward, :o) if you can't beat it then give it your very best shot! I get down just like a lot of you do but I try to lift myself with good and positive thoughts, 30 years of crap from my ears and I still (almost) have a sense of humour. Good luck, good health and god bless all of you. Mick. |
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HI, dizzies Ravyn - of course, VL is contagious by DEFINITION as any viral infection! Only it is not clear WHAT type of virus can cause VL - medical science is still very weak to explain. Actually - it can be ANY virus (there are thousands of them, many of them rare and unknown). For example, my first bout of VL back in 1971 (I was just 20 years old) was triggered by Hepatitis A viral infection which effected not only my liver but also the inner ear. My liver functions recovered in 2-3 months, but it took 7-8 months for my inner ear to recover from that first bout. Symptoms of the inner ear disfunction were far worse for me than symptoms of the liver disfunction. Farah - I am always absolutely heart - broken when I hear of very YOUNG people (like you) dealing with this horror. Of course, you should stay positive. Just think - you are young and medical science is DEVELOPING (slowly, but surely!). So, you stand a good chance to be cured by some new treatment. Besides, YOUR OWN BODY CAN completely heal itself with time. Hey, Tom - I am still "choking" on grapefruit Seed extract and continuing to swallow Ginkgo Biloba. My only help from headaches are still barbiturate - containing pain-killers. I am absolutely dependent on them. This is not good, but nothing else helps me (I tried many other drugs with absoilutely ZERO effect, or bad side effects). As a whole - I am not too bad and coping well. I agree with you on the following: "could be a lot worse". Anna |
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Thanks for your reply Anna. It's weird but the fullness in my throat and ears corresponds with my dizziness. In other words, the worse the fullness is, the worse the dizziness is. Is it normal for you to feel good one day (i.e., no dizziness, no fullness) and then go back to square one with all the symptoms? That is one of the worst aspects of this disorder. You think you're getting over it (and maybe you are) and then-BOOM! It's back. The fullness in my throat is real. It feels like my sallivary glands are affected as well-swelling. I feel something in the way when I lower my chin to my chest. I guess this is all part of VL but I'm almost ready to see an infectious disease specialist. Good luck to all of you folks, Megan |
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hi everyone, I just wanted to say hello and tell you that I still look at all the new people comming on this site. i am feeling great I finally have my life back and Im sure all of you will too. I have to tell you that I thought I was all over with this I went on vacation to Europe and ate my sweets and drank my coffee did not exercise and even had a couple of cigarettes and this thing started to come back not bad but I had this off feeling again. So back to my diet and healthy stuff and I felt fine within a week. I guess I cant go back to my so called normal style of living I have to follow my new style no caffine no nicotine no sugar no white flower protein with every meal eating every 2 to 3 hours and lots of fish fruit grapefruit and veggies. Hugs to all . to those who are new to this, I never had anything worse than this but I guess It goes away. Tom and Anna stay well |
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beata how long did it last for you? does flying make it worse? so glad u are normal Deus |
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Hi All We've had a heat wave here in the south of the UK recently and my dizziness has been absolutely dreadful. I asked Chris Wood why and he was able to explain a few things to me. I know that in the US most of you must be having really hot weather so I hope this is of use to you. The balance mechanism needs a good rich blood supply to function at its best but unfortunately when the temperatures rise our bodies automatically thin the blood. As dizzy people, all our energy is put into keeping us upright and the brain has to work flat out to do so. In hot weather, however, our energy is sapped and we don't have the extra reserves to cope with the balance problem. Thus, worsening the dizziness and making us even more tired. This, in turn, exacerbates the anxiety which further restricts the blood flow to the ear when the neck muscles tense up!! In some people the ear can ache, tinnitus is heightened and pressure builds up in the ear. Because our brains haven't fully compensated it feels like yet another set back but it certainly isn't. Advice is to keep calm, keep resting and drink plenty of water to cool the blood. Love Frances |
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Megan- i know it was a couple of weeks ago that you mentioned neck trouble, but I have/ have had exactly the same experience. My neck feels swollen at times and extremely restricted. it also feels that my neck muscles are pulling downwards (if that makes any sense). When I get a bad neck my head also feels like it pulsates. My otoneurologist said that it is because the neck is trying to compensate for the ear damage. Without always realising it, when you feel woozy/ dizzy the neck muscles tighten. Over a period of time this puts pressure on the neck muscles ( as they are trying to do the job that your inner ear is having problems with! ie keeping you up straight!). Many of my VRT exercises focus on the neck (Head rolls etc). Over time my specialist said that my symptoms will improve and my neck will loosen. Ive had VL for 5 months ( although I also had a bout 2 years ago)and have been doing the exercises for 5 weeks. Certainly seen some improvements and my neck is starting to get better ( although it is still present). I seem to be more freaked out by my tinnitus which Ive had for about 4 months. Specialist said that the neck tension can bring on tinnitus or make it worse. He didnt seem overly concerned and said it will go, but its sooooooooo frustrating. Has anyone else had tinnitus and has it gone? Frances- interesting info about hot weather. Im from London and its been very hot and my head has been all over the place ( bit like drinknig six glasses of wine - I wish!). I will try drinking more water.Hope you are feeling better after your cleaning your carpets with the dustpan and brush experience. Ive taken some tiles off our bathroom wall today and I may pay the price in the morning!! Isnt life fun!!! Love to all sarah x x x x x xx |
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hey dues, mine lasted for over 3 years it just got a lot better when I changed everything. I just went to the endocronologist and my blood test were great. My white blood cell count was a little higher when I was going through all of this. I always felt great when I was flying it was after I landed that I was dizzy. Walking the airport was terrible. I had to be careful because I was afraid that some would think that I was drunk. I felt like a cat that lost a whisker. Frances explained the heat so well I never realized that but I would avoid hot weather places. I used to love the beach but I lad a layover in austin and I thought I was going to die. I was so off it was terrible. Now however I can go to the beach I even went on a small boat I was ok. But i notice a huge difference when I start going off my diet. It does not happen the next day it takes about a week of bad stuff then I get symptoms and then it takes me about a week to get it together again. This thing is sooooo weird there is a defenite pattern but different for everyone. Stay well Beata |
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hey...thanks anna for you concern :) i've been a feeling a bit better the past couple days, but the imbalance still persists - saw my ENT and he said that it should gradually go away - so im crossing my fingers and hoping it won't last too long and i can get back to at least my old self. heres a question tho...i woke up this morning and my lips to the tip of my nose became numb...like pins and needles...for about 5 minutes. now its gone, but i still kinda feel like a bit wierd on my lips and nose. have any one you had this happen??? other than that, im doing okay...hope the rest of you are all feelin well enough to at least enjoy some hot weather :) take care everyone! I pray that we all recover from this soon!!! farah :) |
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Hi, all Just a little bit of my personal experience: DRINKING WATER - sipping all the time - has become my second nature during the past two and a half years. I found it very-very helpful in minimizing dizzy spells especially during HOT WEATHER. I ALWAYS have a middle size bottle of water with me whenever and wherever I go or ride. Anna |
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update.....its been 1 year and almost 6 months.(not yet)........i do everything the same as i used to except still the lighthead feeling 24 7.....and when i drink on the weekends the next day is rough for a few hours but then i get better.....but as for everything else if this lighthead feeling would go away...i would be 100% |
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hey everyone. just wanted to say that im 9 months into my labs and im feeling really good. things have been alot easier for me and i feel overall really good alot of the time. i still have my off moments and anxiety.....but i think im ready to go back to work and start living a normal life sometime real soon. its true that this thing lasts a long time and goes gradual....but it does go. hope everyone is doing well! |
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Anna, Have you explored the possibility of MAV? Migraine Associated Vertigo... Many people on the other boards have success after taking some of the MAV drugs. Their dizziness is not vertigo in many cases. |
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Sam - thank you for the advice. Of course, I have read a lot of information about MAV. I even know the most prominent doctor in research and treatment of MAV - Dr. Baloh from California. I chat on the internet with people who were diagnosed with MAV. The CAUSE of migraines without dizziness, or with the dizziness is not known. So, the treatment of any type of headache including migraine headache remains TRIAL and ERROR. I tried a great variety of different drugs both for migraine and tension type headaches (during bouts of the inner ear disorder I have absolutely exhausting head pain). I know that barbiturates work for me the best. How I communicate with my family doctor - it's kind of: Doctor - let's try this, doctor lets' try that". Recently, I asked my doctor (usually I call him, not always even come to him for an office visit) to prescribe me a very powerful migraine drug IMITREX. It's a miracle for many people with migraine pain. I gave IMITREX a try right in the beginning of a severe head pain bout which started because of a coming thunderstorm. So, what happened: I thought - I would die - this one tablet of IMITREX immediately caused such pressure and burning in my poor head, that I threw up and remained in such condition (crying and cursing and hating my misery) for the whole night. Even my family members who are used to me being in horrible condition for months in a row were surprised and scared of such a bad reaction to the drug. I continue to search for new drugs, treatments but mostly - for RESEARCH in the area of vestibular disorders. Being a scientist myself I have an excess to newest scientific literature on-line. Recently I discovered, that there is such a regular publication: "Journal of Vestibular Research" which started to be published in 1990. So, the Science of Vestibular Research is a BABY yet. But at leat something has started. When I first got sick with IT back in 1971 - I was just a "crazy" young girl who "imagine strange things allegedly happening to her". Hugs to everybody. (Do not give up!) Anna
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Anna, I have had inner ear problems for appx 18 months, firstly with constant dizziness, being off balance and anxiety. I recovered almost fully for 6 months then caught a cold. Since then, which was about 5 months ago, I have suffered from constant feelings of being off balance, some days worse than others. I live a normal life and don't let them bother me too much, it has just become part of me now! I was diagnosed with vestibular neuronitis by the ENT, and they say I will be like this for the rest of my life. In your opinion, is this true? Will I ever be rid of this awful affliction? Any information you can give on VN as opposed to labyrinthitis would be greatly appreciated. Anyone else, have VN and what are their symptoms? Thank you. Sandie |
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sandie any doctor that says you will be like this the rest of your life has no clue what they are talking about. its simply not true |
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hi i am 15 and have been suffering from labyrinthitis for 2 months now. sometimes the symptons are unbarable and completely disabeling, as yu all probably know already. But i was just wondering how yu know when yu are recovering for sure. Is it just a rollercoaster ride? x |
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Hi all, Your posts have been very helpful and comforting! I was diagnosed with VL a year ago after an initial mild episode of vertigo. Actually, I saw 4 or 5 doctors and only the ER doctor gave me a diagnosis of VL, the rest weren't quite sure. MRI and CT were normal. My main early-on symptoms were heavy-headedness, some nausea, brain fog, malaise, strange neck sensations, and this strange symptom I'll call "tired leg" for lack of a better term, in the left leg. After about 3 weeks most symptoms lessened though the "tired leg" feeling shifted from the left to the right leg. Over the course of the past year most days have been manageable with symptoms gradually getting better though not completely going away. Then, this past week a new symptom, slight muscle twitches, has appeared. Most of my symptoms seem to be in line with what I read from everyone here, but has anyone had this "tired leg" feeling? Has anyone had the muscle twitches (especially in the legs)? And, is it odd for a new symptom to appear a year after the onset of VL? Thanks again for all the help your posts have been! Bill
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Hi Sandie Please, please, don't panic!!! I also have VN and I've been suffering for 9 months. I'm about 70% better, although I've had many, many setbacks but I've been assured by my specialist that I WILL make a full and complete recovery from this. He sees people day in, day out with this condition and he has made this promise to me (more than his jobs worth to say otherwise!). I do hope this puts your mind at rest. There are too many 'so called experts' out there who just don't know what they're talking about. Love Frances |
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I know from reading everyones messages that this horrible thing can go on for quites some time. This is about my 12th week and my appointment with the E.N.T is not until the end of august. I have had a lot of really strange symptoms and for a couple of days I almost thought it had gone, then I woke up one morning and felt like I was back onboard a ship. I am trying so hard not to let it take me over but I keep having nagging doubts that what I have is not Labs but some sort of brain disease. has anyone else found this. I feel so low, like I'm going mad. Sorry if I seem full of self pity, but i think I am. Thanks to everyone who is keeping this page going. Its the one thing thats keeping me going. |
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Hi Chris, thanks for your comments. I have seen this guy twice now and both times have come away thinking that he is a bit of a jerk. He told me last time that I was not a typical patient for people with inner ear disorders. Excuse me, but everyone on here has similar symptoms to me i.e. balance, dizziness and anxiety, ao why am I not typical? All I have left now, after 18 months, is the balance problems and hopefully they will go eventually. Frances I do agree with you, this guy is nothing more than a kid, probably fresh out of university and he was contradicting my consultant, a respected man with many years experience, which in itself is very unprofessional! I really only keep on going to the ENT because I want it on my medical record in case I do get worse over the years, like Anna, and cannot work. Take care xx Sandie |
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Hi, everybody Sandie - Chris (what a clever boy!)just answered your question, that you somehow addressed to me - is IT (labs, or VL, or Meniere's or whatever inner ear problem you have) your "FRIEND FOR LIFE"? Chris (8 months with IT) said: "any doctor that says you will be like this the rest of your life has no clue what they are talking about. its simply not true" Anna - myself - (34 years with IT) I AGREE COMPLETELY WITH CHRIS!!! (see his above mentioned statement). Believe it or not - but I am still slowly, non-linearly, but gradually recovering from the worst of IT (I overgrew, overcame a lot of symptoms and have left them in the past). Look up at Illia's story at labyrinthitis.org.uk (link on the top of this page). She recovered at a three year(!) mark. And she is still 100% normal. I personally know several people like her (now my buddies on the Internet). Sandie – was it you, whose supportive husband told you: “Sandie, just live one day at a time”? Isn’t he right? Rich Baker – you are still keeping the website for us. Thank you so much again. Anna |
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A Question: Hi all, I was wondering if anyone could provide any insight into what I'm going through. Soon after arriving in Prague in early May of this year, I was hit with a severe bout of vertigo, my first ever. It was terrible. I could barely walk, but my girlfriend led me to a hospital, where I was hydrated by IV (from all the vomiting), told I had a virus and sent on my way. The after effects (continued vertigo, jumping sidewalk, etc.) continued through much of the month, but I was noticing considerable improvement, and thought myself completely cured by late May/early June .Well, now it's July 20, and I've spend the last three days coping with the same (albeit much reduced) symptoms that I experienced in May. The nausea hasn't been so bad this time around that I've had to vomit, and I haven't been hit with the kind of vertigo I experienced before, but I'm definitely wobbily on my feet, am experiencing ringing in the ears, and have had a few short (3-4 second) attacks that pretty well made me grab the walls for support. I wonder, does this reduced episode, roughly 8-9 weeks after the first (with a month of no symptoms in between) a sign of brain compensation to permanent damage of the inner ear? Or could my body still be coping with the virus? Thanks for any info you can provide. |
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Thanks Anna, I just need a little reassurance now and again when I get depressed about this illness. Hopefully, one day, it will be a distant memory for all of us. Sandie |
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hey all, is it true that vl can cause panic attack associated symptoms in reverse? what i mean is that you start getting the physical symptoms of a panic attack when you're not even panicked. i have never in my life had a panic attack but i have had physical symptoms such as difficulty breathing, tachycardia (rapid heart beat), perhaps fullness in throat is part of a panic attack too? anyway my family practitioner advised me to see a cardiologist who did a stress echocardiogram. fortunately my heart is in excellent shape but they put me on a heart monitor just in case. well sure enough i was just reading my e-mail and my heart starts beating into the 150's. my cardiologist put me on a beta blocker for awhile. can vl cause tachycardia? all other tests have been normal and i have had a slew of them. anybody experience this? megan |
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Dan - the recurrent bout of vertigo that you just experienced is normal...as I've read, many individuals on this board have had bouts on and off...its almost unpredictable to say when they'll even occur, just when think you are getting better they can come back sometimes...thinking positive i found is what will help you make it through each day...i am still pretty wobbily and the ENT has said that my body needs to adjust to it now since i've been living with it for so long now (1 1/2 years almost) if it weren't for the imbalance i think i would be at 90%...but most days I feel as though I am at a 50%...all in all its not so bad as it was before...cross fingers it won't ever be that bad again...i'm still adjusting to walking, because the last couple months have been extremely bad for me...mind you i'm only 20 and feel as though my social life has become fairly limited...however i'm looking towards a positive future and i tackle each day as it comes! you will get better...have faith...we will all make it through this...don;t let it get the best of you! we're all fighters!!! much love...take care everyone! farah :) |
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This is a reply to a posting from Anna ealier this month reguarding PLF surgery. I hope that this posting will encourage you to reconsider surgery as a tx option. In 1997, I flew across the USA in a commercial airliner. I did not have a head cold or congestion. My eustachian tubes malfunctioned during the descent of the plane causing both the oval and round windows of both ears to rupture. I was only 13 years old. My sypmtoms were constant dizziness (violent swinging sensation), severe ear pain, tinnitus, mild hearing loss, fatigue, headache, and nausea. I tried to "heal" my ears through 3 months of bedrest. No improvement. I tried VRT; no improvement. My first PLF surgery was in Nov 1997 and was on my right ear. Immediately after surgery, I thought that I had lost hearing and felt worse; however, all those symptoms were from the swelling in the ear due to the operation. As the swelling went down my hearing came back and I started feeling a little bit better. No miracles though. My second PLF surgery was in Sept 1999 and was on my left ear. Same thing happened--I felt awful immediately after surgery until the swelling went down and my ear calmed down. I had severe nausea that lasted for several months. However, I also had Endolymphatic Hydrops in both ears complicating the situation. I was put on a diuretic and balanced diet. I finally started living my life again in Spring of 2000. I pushed myself to do things, even though I felt dizzy. I started attending community college that summer. I joined speech and debate team, which required that I travel to local colleges in the area for competitions. Gradually, the dizziness faded into the background of my life. I noticed it less and less, the "brain fog" started clearing, and the nausea was gone. Today, I am in a masters degree program for speech-language pathology. I am able to be up on my feet for 10 hours a day, running around seeing patients, and multitasking in noisy and visual environments. I do get fatigued and have residual dizziness that just won't go away. Yet, I hardly notice it, unless I've had alcohol, too much salt, barometric pressure changes, or other triggers. The point is, I DID NOT DIE. I DID NOT LOSE MY HEARING; in fact, my hearing improved. I DID NOT HAVE FACIAL PARALYSIS. And most importantly, I WOULD NOT HAVE ACCOMPLISHED EVERYTHING I HAVE DONE WITHOUT THE PLF SURGERIES. I would be sick and lying in bed without the surgeries and help from my doctor. The reason why you don't hear of many success stories on the internet is because those of us who have recovered are busy living our lives, don't want to remember feeling dizzy, and are eager to move on. I on the other hand am always browsing the internet and latest research articles on inner ear disorders because I am intensely interested in understanding how the brain interacts with the vestibular system. I hope that you reconsider PLF surgery and treatments. Find a good neurotologist in your area; I was lucky and happened to live in the same city as one of the leading researchers of PLFs. Do your homework--don't trust everything you read on the internet. There is a lot of misinformation out there. Try searching PubMed or Google Scholar for journal articles instead; you can find a wealth of current information there. Sorry this is so long! Sincerely, Melissa |
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Hi Megan I'm also on a beta blocker to slow my heart rate down. When I first got sick I spent a week in a cardiac care unit and had to have my heart 'shocked' back to regular rhythm. My heart is also in excellent shape and I've had many, many tests done but it still gives me palpitations occasionally when the anxiety is bad. Also, in this hot weather!!! Frances x |
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thanks for the reply frances. i honestly believe a lot of ent's don't get all the other symptoms that go along with vl. it's weird but when my throat and chest do not feel pressure, i hardly feel dizzy at all! when i do have the pressure, i am more dizzy. i hate these cardiac symptoms. it must have been scary to have to have your heart shocked back into rhythm. did the docs understand it was vl? megan |
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Hi, everyone! Melissa – Thank you so much for sharing your story with us - it is really a success story. You are a great young lady because you DO CARE about people who are still dizzy and who have not recovered yet. Like you said in your post – not many people who recovered go back on the Internet for research of their former trouble and for support of the still sick people. Melissa - Your point is: “I WOULD NOT HAVE ACCOMPLISHED EVERYTHING I HAVE DONE WITHOUT THE PLF SURGERIES. I would be sick and lying in bed without the surgeries and help from my doctor.” How can you be so sure??? Maybe, natural healing would do the same effect on recovery in a long run (in a year, or two)??? (only without possible complications from surgeries and that very difficult post-operative periods). In fact you tried to heal your ears naturally for only 3 months before you agreed for the first surgery. But, anyway, thank you for your post. Of course, I will try to contact your doctor if you can provide me with his name and state of residence. Maybe, he has a real proof, that without PLF surgery people never recover, or a real proof, that PLF surgeries speed up recovery. Melissa – I also have a very practical question to you. Do you travel by air? If yes – how long are the flights? Good wishes to all of you, guys (I regularly read all the posts). Anna |
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I just came online today to do some research on labyrinthitis and found this blog. Wow! I certainly feel for what you all have been going through. I just got my diagnosis last week after a really bad dizzy spell(which included the spinning room, vomiting, panic feeling etc) that sent me to my Doctor. I'm feeling pretty good today, but I do understand that this could be an ongoing thing, which scares the crap out of me. Just getting in the car and heading to work this morning was a challenge. I will just take things one day at a time and at least I know I have a doc that listens and a place to come to with people that truly understand. Please take care of yourselves. veronica |
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Hi everyone! First of all thank you for all the valuable information on here! DIZZY MONSTER STRIKES! ------------------------ I had BPV about 4 years ago, I just got up one morning and BAM room was spinning out of control. I did my research and found out I had benign positional vertigo. My friends thought "Vertigo" was something cool and wouldn't take it seriously. I just remember being asked over and over "are you still dizzy dude"? I know how it is though, when you don't know about something its hard to understand what the other person is feeling. Which is why its refreshing to read these posts detailing exactly what I am going through. HOW LONG ------------- Well, the dizzyness lasted for a month and a half. I am a very active person and the worst part was I could not participate in sports, I remember watching my friends play basketball from the sidelines and wondering when the "dizzy monster" as Anna puts it, would go away. One of the main problems I had was explaining to people what was wrong. I looked fine, was not in pain but inside I was very depressed and just "off". People have a tough time getting that and they might think you are putting on an act or being lazy or something. Just be patient with them. MEDICAL ----------------- I received all kinds of medical treatment including cat scans, went to a ENT specialist, took different drugs, nothing worked. I even went on a low sodium diet which a pregnant woman who had vertigo suggested and it just so coinceded w/the BPV going away. I'm not sure if it just ran its course or if the low sodium diet actually helped. GONE! HURRAY!! --------------------- I made a full recovery and was fine for 4 completely dizzy free years (I didn't even feel the light headed feeling). OH NO!! IT'S BACK ---------------------- Then about a month ago, I got it again!!!! I will say it is less severe than the first time, this time around its like I've had a few drinks and I'm walking on a boat. Last time the entire room was spinning quickly and worse in certain positions, I would get a "warp" like effect if I moved my neck in certain spots. HOPE AND FAITH --------------- At first I was pretty calm about it since it wasn't too bad and I figured my "low sodium diet" will do the trick. After a week of eating less than 500mg of sodium a day and losing 11 pounds, I was the same. Slowly as more time has gone on, my anxiety about it has increased. Last time I was desperate and EXTREMELY depressed, this time around I feel much more hope and faith that it will go away. YOU CAN DO IT! ------------------------ So even though I'm writing this dizzy, I would just like to encourage all the people that have it for the first time that you can and will get better. Please don't lose hope, its a very scary thing to lose. God bless! Please feel free to e-mail me w/any comments/hints/questions. pablobuitrago07@hotmail.com Sorry for such a long post! I'll make it much shorter next time, promise :) Paul |
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thanks paul for your encouragement. mine started on june 6 of this year. i have not been able to sleep flat since then or else i would get extremely dizzy which was scary. but sleeping on 2 propped up pillows is too hard on my neck and i just can't sleep that way. so i woke up at 3:00 am last night and laid there depressed and said to heck with it. i took a pillow away and it felt so good to my poor neck and body and i was really not that dizzy. unfortunately today i am paying for it. feel kind of seasick and more dizzy. also more fullness in the throat and ear which is associated with labyrinthitis. maybe it is a good thing. maybe my brain is learning to comprensate. i am going to try it again tonight and i have started working out again. i refuse to give up my life. megan |
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megan...i also cannot sleep flat on my bed...i feel totally off when i do and even scared that the dizziness will strike back...wat i found works for me is sleepin on the sofa...the elevated arm rest works as a great way to keep ur head from lying flat on the sofa...put a soft pillow or two on it and try that out...it may help ur neck as well as preventing the dizziness. :) farah |
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I'm still suffering constantly with altered sensations in my body, i.e. can't feel if water is hot or cold, pins and needles, numbness, tightness, electric shock feelings down left arm and leg, oh dear, the list goes on and on!!! Anyway, to cut a long story short I've been referred to a Consultant Neurologist to investigation what's actually happening to my nervous system. Apparently I'm being sent, more for my own peace of mind really, once and for all, because these symptoms are getting me down. It's bad enough coping with the dizziness. I know I'm not the only one who gets these other symptoms and they can occur due to the nerve damage in the ear but I'll keep you all posted as to what happens. I hope you are all doing better than me at the moment. Try to keep positive. Frances x |
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Many thanks for this site. Its just a relief to communicate with other people who understand. This condition can be so socially isolating. I had labs two years ago, got symptoms two weeks ago. GP hasn't a clue, so this site is my source of information. Many thanks to all of you. |
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Hi farah, i just had had enough of not sleeping for 2 months sleeping propped up. it's not natural for me. i have always slept on 1 low pillow (i hate the fat spongey kind). like i said, i want my life back. and yeah, every evening before i go to bed the anxiety presents its ugly little head that i may get dizzy on my one little pillow. but i have been doing it since my last post. the dizziness starts but then subsides. i sleep on either side or flat. and i sleep fairly well which is important in my overall well-being. the sea-sick feeling in the morning has not been as bad as the first time that i tried this. but whether i sleep propped up or flat there is always dizziness in the morning. and once i get moving it seems to go away. it waxes and wanes a little throughout the day for no apparent reason but i keep right on doing what i do. i am just a person that feels that life is just not worth living if you cannot do the things you enjoy. so i will push through this dizzy or not. fortunately i never have puked like so many of the poor unfortunate souls with this disorder. but if i do, i'll just puke and keep going and hopefully one day my stupid brain will compensate and give me some relief. yes, i get angry about all this but the anger is toward the docs who just don't seem to "get it" when it comes to vl. and i know this is not the worst disease or problem anyone can have. i'm not that stupid or self-absorbed. i'm just like so many of you folks-just tired of it. sorry for venting. megan |
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Hi all Finally, after 6 months Im starting to see vast improvements. I really feel that the vrt is working. It hasnt gone yet but my sympotms are less severe and not so up and down. Due to taking some antidepressants I have benn getting at least 10 hours sleep a night which I feel has also helped me physically and emotionally. At my worst point I was lucky to get 4!!! I do still get ear pain and tinnitus. I still feel like Im on a boat except its moored to the keyside now rather than out at sea! I know some of you have suffered far longer than me but I hope this message gives you some encouragement. I thought it would last forever, but it does start to lift eventually. I am going back to work partime in Sept ( im a teacher). A bit nervous as I know I wont be 100% and Im a little worried that others may not understand this. By the way Megan- know what you mean about Docs. My experiences with GPs and the like has really opened my eyes to the lack of knowledge/ understanding about how debilitating this virus is. When I told my GP I had a stiff restriced neck his response was " Thats strange". Not the mopst helpful comment when you think you have brain damage!!!! The otoneurologist that I have seen for the last 2 months is the only person I have come across who really understands the symptoms. In the early days I found out more useful info by coming to this site than any GPs that I saw. Thanks Rich for still keeping this site running. Its been a crutch for me since the start of my illness. Im sure Im not alone in saying that without the support of this blog and people like Anna, Frances, Paul and all the other people whos names I havent mentioned, I dont know how I would have coped. I have had a lot of support from family and friends, but at times I feel that its hard for them to fully understand if you know what I mean! Keep strong and remember it does get better! This was only supposed to be a short message! Love Sarah x x x |
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Hi folks and thanks sarah for your reply. i have an appointment with a different ent in a couple of weeks. they told me because of my vertigo i would see the audiologist first and then the doc which is ok by me. if i get the "that sounds strange" or "no, that's not associated with labyrinthitis" i am going to a doc in houston who is an ent, an otologist, a neurotologist, and an otoneurologist. i figure if he doesn't know all about the weird sypmtoms, no one will. i live in texas so i am fortunate not to be too far away. but i am hoping that i do not have to travel that distance and that this next visit to the new ent will give me answers. i just want a doc to say "yeah those symptoms are weird but they go along with labyrinthitis." i do feel that i am getting better but it is very slow. i am trying to rehabilitate myself by not guarding my neck or head in any positions (i.e., i dry my hair bent over with my head upside down). i guess that would give my vestibular system a tad run for its money. i cannot go back to work yet as i am an occupational therapist and i help people get up and move and do their activities of daily living. i have to be completely steady on my feet or i feel i may put my patients or myself in danger of falling. so i will wait and do whatever it takes to get back to "normal" if there is such a thing after this. one of the worst things about this disorder is that you can feel pretty good for a couple of days and then the next day you feel dizzier, more numb, more fatigued. it makes you lose hope. i appreciate all who have replied since this website was started. i think i've read them all. keep your chins up. megan |
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this question is for the ladies: do you feel that your symptoms are worse when you have your period? |
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Michele Unfortunately, ladies have more problems with dizziness during periods, menopause, pregnancy and any other specific women's bodies changes. Sad fact. Anna |
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hey all.. I havent been on here for a while... I am still suffering but its the fatigue more than anything.. Still working from home but have just taken up swimming in the nearby gym... And its been a nice refreshing break in the day which ultimately i think will get me more energised... Even if you start with 5 laps! Its a good mind clearer and you feel better with yourself after.. I only do about 10 laps slow but its the fact that I am doing something..!! Also, since the fatigue is the main issue for me -- i have gone to a Homeopath doc and on some herbs.. I suggest everyone goes to an alternative doc.. Thats my 2 cents! Hope everyone is ok dee |
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dee - if you don;t mind sharing...can i ask you what your homeopath has put u on? i have also been seeing a homeopath... thnx f. |
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Hi All, I just wanted to post a success story from a former labs suffer. I was first diagnosed with labs about a year and a half ago. It started with sudden virtigo which hit me from out the blue. Then eventually the vertigo went and I was left with the spaced out feeling, and generally unsteadiness like after you've been on a boat all day. Also started having panic attacks which I'd never had before. I can safely say it was the worst year in my life. I used to read this forum searching for people who had actually got better but for most it just seemed to go on and on. Anyway I'm happy to report that I'm now 100% recovered and that it does eventually go away! It did take over a year for me but I'm now back to who I was before I got the dreaded labs. Good luck everyone, it will go away! |
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Anna, Sorry I didn't get back to your post right away; I lost my link to this webpage and have spent the last two evenings searching for the page. Oops! You are right. I don't know for a fact that it was the surgeries that finally closed the fistulas. My ears may have healed on their own naturally, but try to keep a 13 year old on bedrest for longer than 3 months! I wanted the quick way out. Of course, there is no quick and easy way out! The reason that I said I wouldn't have gotten where I am without the PLF surgeries is that I don't think that my fistulas would have healed on their own. The round and oval windows of both ears were so perferated with holes and leaking perilymph that the doctor said it looked like "cheesecloth" before he put the patch on(e.g. they had holes all over the membranes). The way I look at it is that the doctor set everything in order in my ears, put a "bandage" on the windows, and God did the healing. My body still had to heal--adhere to that patch, rejoin the membranes that were broken, and strengthen over time. You would put a bandaid on a cut to stop the bleeding, right? The bandaid doesn't heal the cut though. So, think of surgery as a bandaid for the ears to stop the leakage of perilymph so that the ear can heal. That's how I see it. Now the bad news...you asked about flying in airplanes. I refuse to set foot on an airplane! Mostly, because I am at huge risk for re-injuring my ears due to the pressure changes in the plane. (Since that is how it happened in the first place!) It would be like playing Russian Roulette for me. I might be perfectly fine, or I might be back to where I was. I have trouble riding in cars going over mountain passes--my eustachian tube gets stuck and the pressure accumulates in my ears. So, I'm very careful not to do anything that might re-injure my ears, such as heavy lifting, contact sports, flying, and other strenous activities. I used to be a tom-boy type, but I've had to become a girly-girl so that I don't hurt myself! Hope this helps! Melissa |
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Anna, I'm trying not to endorse my doctor because I know that there are other qualified and competent physicians out there who treat vestibular disorders. However, if you are anywhere near Portland, Oregon, USA, there are two well known researchers in the area. One is Dr. F. Owen Black, and the other is Dr. Epley. I've seen one of them, but I'm not going to publicly say which one. They are both excellent and cautious doctors/researchers. For doctors in other areas who specialize in vestibular disorders, you can visit VEDA's webpage at www.vestibular.org Melissa |
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Hi, everybody I have been suffering from dizziness, headaches, noise sensitivity etc. for almost three years. It became totally disabling more, than a year ago when it forced me to quit working. Currently I am fighting with a big insurance company for my long-term disability benefits. I was forced to hire a specialised lawyer to help me with this. I did some research and I have found out, that insurance companies (at least in the USA) have become increasingly aggressive in denying disability benefits even for highly qualified professionals (like myself). I am an engineer, PhD in material science with 14 year of education and almost 30 years of work experience in industry and science. As my lawyer explained they are not afraid of a lawsuit or any litigation process. Maximum they will lose is a small fine and the benefits they will be ordered by a court to pay me (which is NOTHING to these big sharks). But it is a great chance, that a victim (like myself) will give up at any stage of this fight. I am very angry and sad at the same time. Thanks God - I am not in need - I have a well-paid husband and some savings. But what about those people who got disabled by whatever reason (my reason is "vestibular disorder") and who do NOT have financial support? The more I think about it - the more I have this desire to fight for my human rights despite my illness and weakness. Sometimes I think - what kind of people work in such insurance companies? Is their morality perverted in some way? They are watching me agonising in pain and frustration, knowing for sure that I am VERY SICK (I have many FACTS, that they DO know it!), but they plot and make schemes to demoralise and to scare me. Enough sad thoughts! I am coping well, guys. I am waiting for this hot-hot weather to go away finally. Then I will be able to walk more outside the house. MELISSA, Melissa, MELISSA, Melissa - where are you, brave young lady???? Who is your wonderful doctor - a great specialist in treating PLF ?????? I desparately want to communicate with him !!!! It does not mean that I will agree, but I want to TALK to him!!!! Hugs to everybody and take care. Anna |
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Hugh I have this for a year and still have the spacey off feeling. Did you had good and bad periods.Even after a year Im still having one now! Did you get better by VRT or did it just dissapear.how did it dissapear? Did u wake up one day normal. Sorry for all the questions, but i hope you can answer some! Deus |
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Hi, my experience started about 2 weeks ago. I was actually in Dennys with a friend of mine. I started ordering my meal and I all of sudden had speech problems, and my voice echoed in my ear. I started feeling dizzy and then I started panicking. The next morning I woke up with a heavy head. the next few days were hell. I felt dizzy and nauseous and extremely anxious, and I had no clue what was going on. I went to the doc and he said I might be having a migraine or an inner ear infection. The next morning, I woke up and I was freezing cold and I freaked out and went to the ER. The ER doctor told me I was just having a panic attack. Gave me ativan and sent me home (after waiting there for 4 hours to see him). My GP thinks its an inner ear infection and told me that I just needed to wait it out. He also put me on celexa (anti-depressant) for the anxiety and despair I am going through. So ive been feelinng dizzy and nauseous for the past 2 weeks. I have trouble walking. I cant have conversations with people because it makes me sick to listen to other people and even talk. I get exhausted really easily. I have no appetite but I have been kind of forcing myself to eat fruit and oatmeal. One of my biggest problems is sleep. Whenever I try to go to sleep, I start feeling dizzy, then wake up immediately with acute anxiety and odd sensations and a little more nauseous. I also have weird and vivid dreams. My emotions are all out of wack right now--feeling anxious, panicky, depressed, paranoid. Its been 2 weeks and I sometimes think I cant handle this. Im going to see a specialist in 4 weeks, hopefully get a definitive diagnosis. I am a substitute teacher and there is no way I could go to work feeling like I do. Talking for a minute and Im exhausted. To make matters worse, my mom was diagnosed with colon cancer like a week before I got this, and also had her surgery. I dont feel like I have had time to really process the event, and I feel guilty for not being able to be there for her--she is actually more active and doing better than me. This site has been a great comfort at times, but I see most of the people commenting here have had labs for a long time when supposedly the average time of recovery is like 8 weeks. Ive had it for 2 weeks and the thought of having it for years is almost unbearable. I am 24, I feel like my life has been taken from me... its incredible people have dealt with this for years.. |
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Hi f --- My homeopath deals with alternative chinese meds -- So hes put me on something not specific for labs but will help boost the body, kidneys ect.. The chinese wouldnt call it labs, they would see it as an imbalance in your body. What about you? What have you been put on? dee |
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Hi, everybody MELISSA – I have heard you! Thank you so much for your response and explanations on your health situation. I am so sorry, that you are still having limitations of your activities. One good thing is - you certainly have chances of further healing of your wounded inner ear membranes. Your precaution about airplane trips look absolutely reasonable – just normal “common sense” type of precautions. I know Dr. Epley by his “maneuver” (it never helped me) and by some of his publications. I will certainly have to do some research on Dr. Black. It looks like many trustworthy specialists on balance disorders are located in Portland, Oregon. I live in Oklahoma. According to VEDA association and other resources it is one of the most “stagnated” areas in this field of medical practice. Not to say, that this field of medical practice/science is very poorly developed anywhere in the world. Hugh – 100% back!!!! Success stories are rare here on this site – people are too busy to live their normal lives after recovery (who would blame them!). But SUCCESS STORIES ARE NOT RARE IN REAL LIFE (thanks God!). I have a “collection” of them, no kidding. Love, Anna |
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hugh...congrats... i am at 1 year and 1/2 now...just stuck with spacey head feeling now...im hoping it goes away soon........have panic attacks just like you..hopefully this is a good sign and its coming to a end |
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Deus, It wasn't instant. I just gradually felt more normal. Its hard to describe as you forget what 'normal' feels like! Sometimes if I'm really tired I might feel a bit unsteady but it doesn't really bother me anymore. I just realised one day that I hadn't had a dizzy spell for ages. Last weekend I even went sea fishing in relatively rough seas. Something I wouldn't have imagined doing a year ago. I didn't do any VRT or anything. I got some exercises/tips off this website and jsut tried to keep myself as active as possible. It was really hard at first. I don't think you can beat this thing lying down and you need to stay active. When I was going though some really rough patches I use to search on this site for someone who had beaten it, to give me hope. Well I thought I'd return the favour. Good luck everyone! |
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Jeff your story sounds like mine! I have had vestibular neuronitis for appx 20 months now and am still suffering but a million times better than when it first started. Mine kicked in big time (though I had been feeling slightly dizzy for a few months), just the week after my dad had major heart surgery and I was convinced he was not going to pull through it. He, like your mum, went from strength to strength, while I plunged into a world of chaos. The dizziness you feel as you are falling asleep happened to me too, and though it is very scary, is part of the illness, as are all the panic attacks, balance problems etc. However, you must keep positive. Remember that this is not life threatening, though it feels it at times! I was off work for six months during which time I kept active, forcing myself to go out and walk for miles every day. I was always with someone but if you try and walk yourself without support it helps your brain to adapt. Talking to others at this stage is very difficult, my symptoms used to mutiply when I'd try and concentrate on someone in the early days, I coudn't use the phone, read a magazine or watch TV. Boy, those days were bad. But you will come through this and hopefully you will be one of the lucky ones and not have it for too long. But if not, then you will survive, life goes on. I don't have the quality of life that I used to have, but it's not so bad. Anna, I was on holiday last week and had a bit of a relapse, which kind of spoilt the holiday. My balance went again and I had trouble standing up. Do you know if hayfever can bring these symptoms on? I wouldn't have considered myself to be a hayfever sufferer but have had a runny nose and irritated eyes this year. Why, also, do you feel like you are going to fall off a chair when you are sitting perfectly still, does anyone know? Just to recap, I had Labs for 6 months, then fine for 5 months, relapsed for 5 weeks and since this relapse have had balance problems. Last week I relapsed again and my balance is worse. I don't have any other symptoms, no dizziness no anxiety or ear problems, just balance problems. Take care everyone |
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Sandie – For many people allergies is a trigger of their dizziness. Just look at poll results on dizziness triggers at thedizzylounge.com. From 43 people voted (multiple choice) 19 voted, that allergies trigger dizziness. It’s a pity, that the poll is not that wide. http://thedizzylounge.com/thedizzy_forum/showthread.php?t=3220 Anna |
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hey all, i haven't been feeling very well the past 2-3 days. i just can't get rid of this thick throat/neck feeling and it feels like it is going down into my chest-right side. i have had pain only in my right chest area. i don't even feel panicked-no racey heart, not really anxious, just sad. i still get dizzy from time to time but the throat and chest thing is making me think i've got something else. is this just the panic symptoms even though i'm not panicked at the moment? i was feeling gung-ho a week or so ago but now i actually feel worse physically. i feel inflamed from my ears, throat, and now into my right chest. any advice or similar stories? megan |
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Hi all... Dee - i've tried chinese medicine (but it didnt work for me - i was given tree leaves to boil and then drink its water...which tasted so awful it made me wanna puke...) anyhow then i went to another homeopath...he gave me some drops...those didnt seem to have any affect...so once again i went to see another homeopath...this time cross fingers i have noticed slight improvement...my balance has improved to a degree, but i still feel as if the ground i am walkin on is uneven and bumpy...(hard to explain) anyway...the remedy he has put me on is called Pulsatilla...they are very tiny pellets that dissolve on the tongue... Sandie -- i also get the feeling that when i am sitting on a chair perfectly still, it randomly happens that i feel like im gonna tip over i just reposition and feel okay or stand up for a bit... --- other than that im doing okay i guess, just wish i could get over this before i head to university for my final year (startign sept)...but lately the past couple days ive been feeling tingling and pins and needles in my legs a whole lot...i knw ive read on this site that many have experienced this...its just irritating any ways on how/wht to do to improve it or make it go away....just as i think im getting better something like this happens to me to spoil the mood...ughh getting frustrated!!!! but trying to remain optimistic! take care all much luv, farah :) |
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I just wanted to tell everyone I am feeling much, much better. I've had it for 18 months - the first couple of months were terrible - barely able to cope. Got hit really hard. Horrible room-spinning vertigo and 24/7 dizziness, anxiety, etc. I now have a few days a week that are symptom-free and on my off days it's not that bad really. Some days still feel unbalanced and lightheaded and nervous but this thing appears to be going away ever-so-slowly. I just wanted to write this for those who are still in the difficult phase - just wait it out and live one day at a time. Don't lose hope (although I know just how hard that can be). You will get better too. |
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I posted a few days ago about my experience. And this is going is to be a bit surprising. I have discovered that I in fact did not/do not have an inner ear infection (or at least likely not to have one). A little bit before I had my experience I had stopped taking Xanax. When I stopped taking it, I didnt even think about it and thought nothing would happen if I did stop. I had been taking xanax for a few months, off and on, for sleep, and recently the .5mg Id take no longer had the same effect and I didnt want to up it to 1mg (although I sometimes used 1mg). So I stopped using it--cold turkey. Then, in the next week, I started to experience all the symptoms I described in my previous post--many of the same symptoms that people with inner ear infections experience. When I went to the gp, he thought I had an inner ear infection. When I went to the ent, she thought I had an inner ear infection. Then 2 days ago I realized that I had stopped taking my xanax around the time I started to feel like hell. I started research xanax withdrawal and discovered that it was a very bad and painful process to withdraw cold turkey from xanax and that all the symptoms I was experiencing had been reported by people withdrawaing from xanax. So I saw my doc again, and this time he told me to take the equivalent ativan (for awhile I was taking 1mg ativan to help me sleep through the inner ear infection) of the xanax I had stopped. Which would be 2mg of ativan. I did this last night, and now today I feel 70% better. So the doc has me back on benzodiazipans, and when I feel like I did a month ago, he will help me taper off them slowly. I figured Id post this here because it is quite possible that other people coming across this board, with the same symptoms, thinking they have an inner ear infection, might being withdrawing from something, like Xanax. Since an inner ear infection is rarely diagnosed without anything but the self-reported symptoms, it is very important to continue to consider other causes of the symptoms. And if you are currently, or were using, any drugs, withdrawal is a serious possibility. Xanax withdrawal, for example, can last months. And believe me, it is a horrible experience. For people that really have an inner ear infection, I feel sympathy of you guys, for even though I probably dont have one, I have experienced many of the symptoms you are, and I know how bad it is. Even though the underlining cause of our symptoms may be different, the symptoms are the same and are just as real. Health is such a fragile but precious thing; I hope everyone here feels well soon. -Jeff |
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Hello, Thank you all of you for keeping this website going. I've had vl since 27June06 when my world was turned up side down. I've had all the awful symptoms and after 7 weeks they (hopefully) seems to be settling a bit. However, I have a question for you all. Is it normal to have sporatic vertigo attacks lasting a/b 3-4 sec? I've had 4 episodes of this in the last 2 1/2 weeks and this is what is scaring me the most. Any advice or experiences offered would be great. Thanks, Tracy |
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tracy, do the attacks of vertigo depend on your head position? i think i am getting over this-yes very slowly-but i also had bppv with vl which really can induce a round of vertigo. but i have noticed that the attacks are not as bad as they used to be when all this started on june 6 of this year for me. and they are always dependent on my head position. did you have bppv too along with vl? megan |
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that is so great that people are coming back and telling us they are better! im a month away from my year of labs and it has been the hardest year of my life. but sure enough these past months ive been doing more and more and getting more normal and more normal....its just that its so slow that you can't even notice sometimes. i hope mine will leave in the time you guys have had it. health is a very very great gift now in my life and i will forever be greatful for it once i get it back. |
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Hi Megan, The symptoms I suffer are so random and bloody cruel as you know - one day I am feeling ok, nowhere near normal, but ok. Meaning I can walk, talk, function but feel like total complete hell. Head pounding, shifting focus and blurry vision is a problem with me. Like you, the worse my throat is and fuller my ears are the more lousy I feel. Those days are horribly rough and I usually break down and cry. Anxiety - wow - I didn't know what that word meant b/4 this became part of my life. Back to the short vertigo spells. One was when I was sitting on the couch, looking slightly down and to the left. Two others when I was standing and went to turn....so, the randomness of them is mind boggling and I am afraid (because of them) to drive. I've also had to take time off from my job b/c I am an x-ray tech and it is unsafe for me to work with px. Also I have to drive to get there. I worry a/b having an attack of vertigo while I am behing the wheel of my car! Megan - do you get vertigo EVERY time you put your head in that certain position and how often are you having these attacks a day/week? I don't see my doctor until the 29th of aug again so in the meantime I walk as much as I can (head and body allowing) and found the gaze stabilization exercises on this site and do them religiously. Hope you are slowly feeling better :) Tracy |
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Hi All, I want to first THANK each and everyone of you for taking your time & energy for coming on here.You have all supported me in knowing & believing I am not a FREAK and I am not going to DIE.I was diagnosed back in the middle of June with Labs.STORY here all the testings bloods,MRI (thank you all back normal) Started VRT on July 21 2 x a weeks in office and faithfully at home.I get blue,down,sad,(cry at times for no reason) My days at times seem to be getting better than I will havea nother bad one or not so good one.I allow FEAR to ride my days a lot.I get pains at times all over my body(different joints,muscles,limbs etc) that I never had. I am always asking myself is this all part of labs or do I have something THEY are not finding? ENT said my labs created a secondary sympton (some sort of Acid Reflux) from all the nauseau created belching created swelling in & on and around my esophogus.Now on my third medicine for this.First Nexium,than portonix now Aciphex they all seem to create very uncomfortabe stomach problems for me.I take 1 aciphex per day 20mg. and 10mg. of reglan per day.Side effects on these can be headaches,gas,bloating abdominal pains,nauseau. (HELLO what is from Labs and what is from these meds.)(Part of me wants to throw all this medicine away) I will STOP for now and check back in.THANK YOU ALL again for being here. I am so grateful to this site & ALL of you. Thanks, Lisa |
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to rich, well i guess you decided not to post my previous reply. it was not meant to invoke fear but to educate and i was speaking about my own condition. what you had for 3 weeks sounds like labs. what some of us other folks have perhaps is labs but the symptoms mimic other serious disorders. maybe i've just been to 2 really dumb or incompetent ents. doctors misdiagnose and kill thousands of people every year. i intend to take charge of my health and get to the bottom of my symptoms and not take someone's word for them. i want specifics and explanations, and illustrations. so i will be signing off for good because if i do have something more serious than labs, i guess there is no way you would allow me to educate the good folks on your website about my symptoms and possibly my alternative diagnosis. the only true fear is the fear of the unknown. megan |
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I'm sorry if I didn't publish your previous comment, Megan, but I assure you that it wasn't deliberate. Sharp Blue gets around a thousand comments a day and all but maybe one or two of them are adverts for pharmaceuticals, pornography, online gambling, pirate software and so forth. I'm only human, and sometimes I don't notice a real comment amongst all the spam that I delete. The automated spam filters have proven all but useless, alas. I don't operate any kind of editorial policy beyond deleting messages that I think are from spambots. Anything that looks like it comes from an actual person gets published. This is even true of comments with which I entirely disagree (which have sometimes been posted to other articles). Yours clearly wasn't one of those. |
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Hi Frances, I can only share with you the source of my inner peace which I am convinced can work for everyone. Mine comes from my belief in my creator and my trust in him. Read Isaih 12:2& 26:3. But don't forget it is in your belief and developing a relationship with him. A relationship does not come through a one time meeting, but through a continual fellowship. Believe me, it does work.