My earlier entry, “Labyrinthitis; or The Missing Week”, has proven unexpectedly popular. Indeed, the comments there seem to have become a support group with extremely valuable information and general support posted by a number of regular visitors. Because that page has now become very long, I’ve decided to close comments there and to divert people who wish to comment to this page. (When this page reaches a similar length, I’ll start a third page!)
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BTW I have been to Labyrinthitis.org.uk before too, but found the hot pink background and the moving objects to be very disturbing!! |
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what is the difference between BPPV and VL? |
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Hi I have been given this website address recently and have found it an enormous comfort. I got labyrinthitis at the end of January following a long plane journey and it has been the bane of my life ever since. My symptoms were at first horrific, I could hardly stand up and kept shaking and feeling sick. I struggled so much to get my doctors to take me seriously but finally an on-call doctor I visited in hospital diagnosed me with an inner ear infection and gave me stematil. My life was unbearable for about two months, I carried on going to work but constantly felt awful, always struggling to balance and it felt as though a weight was pressing down on my head. Since then it comes and goes. Just when I think it is gone forever it comes back with a vengance. Nobody can seem to offer me a solution, even the ear specialist says it will just "go away eventually" even though it has been nearly a year. My last severe attack was in September when it felt like the floor was soaring downwards, I just felt terrible. It is so hard to have to live your life around the "gremlin" as I call it, never knowing when it will strike again but I am determined to get on with my life even though sometimes I feel so uncomfortable and so afraid that it will never go away. I do try and be positive around my friends and family who struggle to understand and I suspect may think I'm putting it on a bit but it has been such a comfort to find others in the same boat. Good luck to all of you Jill x |
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Somebody asked what the difference between labyrinthitis and BPPV was. The following description is it quite accurate, I think: _______________________________________________________________________________ What is Labyrinthitis? Labyrinthitis is an inner ear infection, that can be either viral or bacterial. The norm for Labyrinthitis is to last between 3 and 8 weeks and then disappear without so much of a trace. For a fair number however this does not happen and long after the doctor has said "You'll be fine in a few weeks" such people have noticed no improvement, let alone a recovery. What is BPPV...? BPPV - BENIGN PAROXYSMAL POSITIONAL VERTIGO. BPPV can sometimes occur following a bout of viral Labyrinthitis. Signs and Symptoms... Usually BPPV is characterised by short and very intense bursts of vertigo that are related to certain positions. Quite often people will experience vertigo when they lie down, turn over in bed, rise from bed, lean forward or look up. Generally the vertigo is brief - lasting under a minute and is often accompanied by nausea and a classic nystagmus (eye movements). Benign paroxysmal positional vertigo (BPPV) is a peripheral vestibular (inner ear) disorder in which patients typically report attacks of vertigo with position changes. The exact cause of BPPV is still not completely understood. Although some controversy exists, the most widely excepted theory is that BPPV is caused by otoconia (calcium particles) that are shed from the utricular macula (which responds to linear motion) migrating to the posterior semi-circular canal (which responds to rotational motion). When the otoconia particles have dislodged, they either may settle into the sensory organ cupula of the posterior semi-circular canal (cupulolithiasis) or they may continue to free float within the endolymph of the posterior canal itself (canalithiasis). In either case, their presence alters the dynamic response of the posterior semi-circular canal to head movement, causing vertigo. This may occur for several reasons e.g. whiplash injury, falls, head injury, even high-impact exercises and sometimes as a consequence of viral Labyrinthitis. In certain cases people who have had prolonged periods of inactivity, such as confinement to a bed, may also develop BPPV because of the settling of the otoconia particles. _ _______________________________________________________________ Nikki : These two problems (labs/BPPV) come one after another in any order, and sometimes they just exist together, at least in my case. Maneuvers with moving the crystals (calcium particles) in your inner ear help to many people. But be careful: move your head and body slowly and gently – do not damage your labyrinth! I had a very bad experience with so-called Brand-Daroff exercises (they should be done several times a day). They brought on horrible, scary and lengthy symptoms in me. Epley maneuver is much better, because it is done only once, or twice, if necessary. Anna |
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I suffer from labrynthitits on a regular basis. the worst was a couple of years ago on boxing day, I thought I had food poisoning because I kept vomitting, and felt dizzy. I called the Doctor out who diagnosed labrynthitis, and gave me stemetil tablets. I still get the dizziness, especially when I turn my head in bed, or during the day if I move my head from the upright position. I have learned to live with the condition, and find I suffer more when there are lots of colds and flu like symptoms about. Does anyone know of anything that I can take to help ease the condition? I read that Ginko Phytosone helps, any suggestions? Thanks. Garry |
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Hi everyone, I hope that you are all continuing to get better. I'm feeling a little down today. I've now had this for 15 weeks and on monday I tried to go into work for a couple of hours (I am a teacher). Monday felt good although I was extremely tired but on a high because I felt like normal life was getting closer. However when I went in on Tuesday, I felt really unwell and had to come home. I tried again on wed but I have had to accept that I can not cope and the doctor has signed me off for another month. I feel so down and scared that I will never recover and be able to cope with my old life. I'm sorry to be negative but I really need some support. My doctor now wants to refer me to a neurologist even though both my MRI and CT scans were normal. What do you think? Love Ruth |
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Hello, everyone who is trying to cope with this cruel thing, Garry, some of the guys who visit this site are taking Ginkgo Biloba on the regular basis. Me too. I am taking 120 mg in the morning and 120 mg in the evening. I can not say that it is something magic, but it would not hurt, at least. Maybe, it will eventually help to restore some of your impaired balance. Somebody found the following information, which looks quite convincing: ------------------------------------------------------------------------------------------------------------ GinkgoBiloba For example, researchers in Poland have recently found that vertigo induced by vestibular receptor impairment (called vestibular organ peripheral lesion syndrome) can be reduced by administering ginkgo biloba extract. According to their study, almost all of the 45 patients who received 120 mg twice daily of ginkgo biloba extract for 30 days showed a significantly increased ability to compensate for vestibular lesions and subsequently experienced fewer outbreaks of vertigo (Orendorz-Fraczkowska et al. 2002). These results confirmed the earlier work performed by researchers at the University of Sassari (Italy), who found that patients who received ginkgo biloba extract at 80 mg twice daily had their vertigo and dizziness reduced by as much as 65% (Cesarani et al. 1998). Dear Ruth, I am very-very sorry for you being so frustrated for not coping with a 2 hour work day at school. But let me tell you something: I expected something like that from your beginning. School is an extremely tough place for people even with very healthy heads (I know this - my mother was a school teacher, and I have my own kids). Forget about that first failed attempt to start “normal life”. You just have not recovered yet! You will be stronger in a month and you will try once again. It is OK to complain, to be negative, to be angry and frustrated, OK to cry (for women). But not for too long, please. Ruth, your doctor seems to be a good guy, he probably feels that he is absolutely helpless (which is true!). So, he referred you to a neurologist, who in turn will feel helpless (if he is knowledgeable and honest to you and to himself). I am not pessimistic, just realistic. Ruth, maybe my example will make you feel a little better, because you are not alone in your struggle. About myself. Although I work a full day, I am not “normal” yet. I adopted many coping techniques which help me make it through the day. I have to take frequent breaks from looking on the computer screen, which often makes me dizzy (just closing the eyes for several minutes helps). When I have to go in a production building to talk to other engineers and technicians, I put bulky protective earphones on my head, and look like an alien in them. I just can not stand a whistling high pitch sound of high frequency power supplies and monotonous low frequency noise of compressors and other equipment. These sounds make me dizzy and unstable - they did not bother me at all before my illness. I absolutely can not stand still while talking to people and turning my head to them, and looking in their eyes and smiling, and laughing. It seems to me, that the next moment I would faint. So, I never stay still, if I have a chair to sit down. As well as I never sit with my head upright if I have a chance to lie down and relax even for a short period (do not have this privilege at work, of course). I still avoid big crowds, go grocery shopping only escorted by my mom and grabbing tightly on a shopping cart, we turn down invitations for parties because of me, do not go to restaurants and concerts. But, hey, I am alive! I have been too talkative, I suppose…. Anna |
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Thank you so much Anna, I really appreciate your help. I have a neurologist appointment for 25th Nov so I'll report back. I saw my GP this morning who has made me feel a bit negative because she suggested I may have to look for a new career. I love teaching, it is a big part of who I am although I have only been working for 4 years! I really do not know how I would cope never mind what else I would do. I am supposed to be getting married in July 2005 but it seems that even this will have to go on hold. Hopefully I will have some more positive news next time! Out of interest, my GP says I have a scar on my ear drum and was wondering if I know how I got it, I do not. Do you think this is significant? Love Ruth |
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I have been diagnosed with labyrinthitis 10 days ago, I still can't raise my head up from the pillow and get up not even to the bathroom. My GP has not helped me at all and an emergency doctor had to come and see me. I currently take Serc 3 times a day but do not find it to be effective. Can someone please offer me some advice on how to reduce the diziness for me to at least be able to get up and not feel like i'm gona fall off a cliff? |
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Thanks Anna for recommending Ginko Biloba. I have heard that Ginko is aslo taken to ease Reynauds (which I also suffer from!) so I will give it a go. I will keep you posted. |
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Hi, sufferers, Alhan, many people mentioned such prescription medicine as Stemetil, that supresses vestibular function and helps to get through the worst vertigo. Call your doctor and ask him about Stemetil. In order to help your impaired inner ear to return to its normal function, you can immediately start taking Ginkgo Biloba 120 mg in the morning and 120 mg in the evening. You can buy Ginkgo Biloba at any drug store. Many labyrinthitis sufferers found it to be hepful, if you take it on a regular basis. Hold on, everybody! Anna
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Many thanks Anna for you advice, I will try to get hold of my GP and ask him to give me Stemetil and I will also try taking Ginkgo Biloba and see how it goes. I really need to get better soon because I have to take care of my 12 year old son and his 24/7 demanding needs. I will keep you all posted on how it's going. Also I would appreciate more tips and advice from you or anyone else on what and what not to do to help me get better faster. Thanks again :-) |
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Visited the Labyrinthitis.org.uk website, and while the bright pink was hard on the eyes, the suggestion of Vestibular Rehabilitation Therapy sounds very promising. I'm going to chase it up with my GP because this is driving me mad - I need physical help not just someone to talk to as I want my life back. |
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Hi all. Have been directed here after someone has signed our guestbk saying they found out about our site via this... Am chuckling at the "bright pink background" comments - I chose it because it stands out and is my favourite colour! I realise it may not be best for v v dizzy people but the site is generally for people suffering from labyrinthitis for years - and GENERALLY by this time their dizziness is bad though not horrific. Sorry if its made viewing the site tricky for some. The problem is it'll take a lot of effort to change it but I may think about doing so!!! Im glad people have found the website helpful. As a 2yr Labyrinthitis sufferer - I know only too well the horrors of the illness - so my thoughts are with you all. I hope our site helps others in the future. Emma xx |
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Hello, everyone who suffer and struggle with labs, Emma, I was very much impressed with your site Labyrinthitis.org.uk. I read yours and Illia’s personal stories very attentively finding a lot of similarities with my story of this disease (recurrent labs/BPPV for many years, on and off). I learned some new coping techniques from your site, which I think are very valuable. Also, I learned, that not only I have hardships with explaining to my loved ones how I feel being dizzy 24/7 while looking absolutely fine from the outside. Your site, as well as this site, started by Rich (thank you, Rich!) are extremely helpful for all people with this inner ear disorder, no matter how long they have been sick. For people, who are disturbed by bright colors, or moving objects on the computer screen, I can share my little secret (maybe, some of you use it also). When I see some interesting information in the length of more, than three-four sentences, I just print it out in quite big letters (font 12-14, black on white background). It is much-much easier to read a text from a piece of paper, than from a computer screen. Carolyn, I am 100 % sure, that physical activity and Vestibular Rehabilitation Therapy is essential to full recovery. Unfortunately, in our small town qualified VRT is not available. So, I try to substitute it by walking as much as possible around the house, carefully walking upstairs to the second floor of our house, I started doing laundry, bending down, making a bed. In the evening I usually ask my husband to go for a rather slow walk in the neighborhood. At any time when I start feeling really unsteady and tired, I stop all physical activity and go to lie down and relax in a silent room. I understand, though, that VRT designed specifically for my needs could work better and faster. Anna |
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This letter was sent to my Rotary club. I think people with balance problems will find it interesting as it mentions places in England where help may be obtained. Dear Rotary Firstly let me apologize now for my forwardness in contacting you in this way, as I can appreciate how busy you must be. However, I thought this might be of interest to you and wondered if you had ever come across it before. Let me stress from the outset that I am not trying to sell you anything nor do I want anything from you in return (except five minutes of your time to read this). I am merely trying to raise awareness of a debilitating and often unknown condition called Mal de Debarquement Syndrome. Basically, with this condition it is an imbalance or rocking sensation that occurs after getting off a boat or "debarking" (debarquement).Other forms of motion have been known to trigger it. Once back on dry land the traveller continues to feel "all at sea", unable to get their land legs back. Although alot of travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many months, even years afterwards.The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs. "Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, not to mention the others, nausea, gaze instability/visual distrubance, constant tinnitus, I could go on. As you will have gathered by now I am one such sufferer (over three years and counting) ever since I stepped off a boat in Spain. I'll not bore you with all the details,but it took me over six months to discover just what I had, my GP and ENT Consultant ( and neurologist) were baffled, MRI scans, numerous hearing tests/balance tests etc proved negative,no anti-motion sickness drugs work (stemitil, Serc etc).So just when I thought I was really going mad, I got a reply to an email I had sent to a large vestibular disorder association (VEDA)in America. They told me that although rare, there was infact a name for my symptoms, imagine my relief in discovering about MdDS. Now I had to set about being diagnosed "professionally". Eventually I came across the neuro-otology department at the NHNN in London who had actually seen cases of MdDS. I was finally referred to them in September of 2002, and my "treatment" there is still ongoing,(Cawthorne-Cooksey exercises) although no improvement to date. More recently I have been to the Leicester Balance Centre their treatment is in contrast to the Neurological Hospital. Who is right, what is effective, who knows? Anyway, what I find most distressing in all of this and what I would love to see change, is the lack of knowledge of the condition here in the UK and, moreover, the lack of research. There is slightly more in America (a dedicated web-site, www.nhffoundations.net/mdds, and one doctors limited research) but again not enough. I understand that it is not life threatening, but it certainly is life debilitating and limiting, and I believe that there must be a great many people out there,wondering around either, at best being misdiagnosed (vertigo, menieres, BPV, etc) or, worse, not having any hope of finding out what is wrong with them. Probably because of my determined "doggedness" I am one of the few lucky ones who has actually been diagnosed.As there is no miracle cure, raising awareness is crucial in helping suffers know that it "isn't all in their head". For me it just helps to feel that I am doing something positive by "spreading the word" and raising it's profile. Last summer and at the beginning of this year I had a couple of articles about MdDS printed in women's magazines, and more recently my local BBC News ran a feature; so far(sadly) I have had quite a lot of feedback, ranging from wanting to know more about the condition to one lady who appears to have had it, undiagnosed, for seven years! Surely this shouldn't happen in today's medically enlightened world? One audiologist in Cambridge told me they see at least one patient a month with MdDS, which makes me question just how "rare" it is. Finally I am sincerely sorry for my direct approach especially if you are already aware of MdDS, and I have therefore wasted your time, but take heart in knowing that there are very few who do! It's just that ideally I wouldn't want people to go through what I had to before being diagnosed.Anyway thankyou for taking the time and trouble to read this. It is certainly not sympathy that I am after but, and sorry to keep harping on about it, awareness of this horrible condition and ultimately a cure. Mrs. J Houghton Cheshire
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Hi guys, I am just wondering if anyine out there has fully recovered from VL? If there is someone, please let us know! How long did it take to be fully reovered? Did you just wake up better? I ask this because I have yet to find an entry on various websites which is from a fully recovered person. Perhaps those of us who visit here should make a pact to post an entry when we are fully recovered. This would be a tremendous boost to those of us still fighting! Thank you. |
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Hi - Ilia on my website is now at 98%. Which I'd be happy with (www.labyrinthitis.org.uk). People most def do recover. xx |
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I think it's fair to say that I have fully recovered. |
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The vast majority of people will recover completely with no trace. It will take them from several weeks to several months, very rarely years to get rid of their trouble. I know personally at least five of them. Only those recovered people do not visit such sites as this one. There is no need any more to vent, to ask for an advice, to share and to reassure each other. These people just want to forget their terrible experience, which is quite understandable. I am still visiting this site, because I am from that “bad statistics”. Very sad, bur I have a lot of experience in dealing with labs, which is hard for me, bur may be helpful for others. Anna |
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Thanks everyone, it's reasurring to know that there is light at the end of this tunnel! I think it is disheartning when doctors say 'it just takes time' so to hear people do recover helps. Rich, how long did your full recovery take? |
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It took me about a month to recover fully, but from about two weeks after the onset of the serious symptoms described in my post I was capable of resuming something approximating normal life. |
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Recovery from lab/vn falls into two categories - the sime cases whereby you recover in 6 weeks or the complicated cases (about 40%) where it can go beyond the year mark. xx |
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Recovery from lab/vn falls into two categories - the simple cases whereby you recover in 6 weeks or the complicated cases (about 40%) where it can go beyond the year mark. xx |
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Hello Everyone, I am happy to announce that I am 98% recovered from VL. If that's what I had. I think there is a difference between VL and vestibular neuronitis. I think I had the latter. I noticed if I get fatiqued, it brings on some tingling and staying hydrated at all times very important. Barometer changes still effect me, but not as much. So, after almost 4 months I believe I am really close to well. I think the ginkgo does help. It has been a hellish experience, but, I believe, I am on the last leg of this viris. |
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Hi, everybody, Robin, it is so nice to learn about your success story (I am knocking on wood, though). Some new information. One of my colleagues at work started to have ringing in her ear. She was advised by her ENT doctor to take a complex of different vitamins called Lipo-Flavonoid. It is over-the - counter food supplement, which, like it was written on the enclosed leaflet, “helps to improve blood circulation in the inner ear”. Whether it is true, or not, I am going to start taking this Lipo-Flavonoid, not forgetting about Ginkgo Biloba, physical activity and rest. Will keep you posted. Anna |
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It's great to hear stories of people recovering. Please add others as it really helps thouse of us who still suffer badly! |
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Hi Everyone, Just to keep you all posted, as I haven't added to the board for a couple of weeks, I think I am on the road to recovery. Its been over 4 months now and whilst not 100% I'm having more normal days now. One thing I have learnt is not to be complacent as just when you think your better something weird happens. It can be a long road to recovery. I stopped taking Ginkgo about 2 weeks ago as I started to get bad skin, one of the side effects I understand. I'm sure they have helped so will give it another week or so and start again for another few weeks. Some recent things that have been happening are twitches on the side of my head, like pulsating veins and probably the most notable is blurred vision in my one eye. this comes and goes, all the doctor advised was to get an eye test at a high street optician, what a help. Also on several occasions i found that my vision skipped forward a bit like someone cut a few frames from a film, very weird. All in all some scary stuff! I still get the drunken feeling, amazingly drinking has had the opposite effect and made me feel sober. But i wouldn't recommend drinking alcohol. Has anyone else had these sort of weird accounts? |
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Hi, everybody, It has been exactly one year as my latest bout of BPPV/labyrinthitis/vestibular neuronitis (call it whatever, I think I had all the symptoms possible, except hearing loss)started. I think I am close to 80% of the full recovery from this current bout. Hope to feel better and better with time running. Kevin, vision problems will go away, they will not be permanent, I experinced some of them, but not anymore. I used to like a glass of good wine, or dark beer when I was symptom-free. But now, just a single sip of alcohol knocks me down immediately. I think I will return to good wine drinking when I feel totally recovered. Good wishes to all of you. Anna
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A strange symptom that I have is a tingling sensation in my body, almost as if my blood is being stirred! Has anyone else had this? I also sleep badly. |
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I am now in my fourth month and have had similar experiences as many of you. Just when I think that I may be over it, it comes back strong. I just had more than a week of being in a complete fog -- many times, I felt like I was going to pass out but never did. It was very, very difficult to concentrate, even just having conversations with people was hard. I have not had twitches in my head as someone else mentioned but I have had a serious pulsating in my head (hard to tell if it is around my ears or what) from time to time. I also have had tingling sensations off and on throughout this whole ordeal. They have been in my face, arms and legs. Last week, I had an episode where the sensation very quickly spread from my neck, upper back and through my arms. It was very strange and freaked me out. The bad spins have gone but my equilibrium is totally off most of the time -- if I stand still, my body rotates on its own. I have also found that even elevators and escalators through my off and aggravate my symptoms. Does this sound familiar to anyone??? I think that Anna once wrote that she has had many scary symptoms throughout her bouts. That has been my experience, too. In the midst of them, I just try to remind myself that my MRIs, etc. all came out normal, and, therefore, the chances are good that I am not going to keel over!!! Hang in there everyone -- we will improve with time. |
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Mary, I am also in the 4th month of this and my symptoms sound quite similar to yours now. I saw my doctor about the pulsating in my head and it turns out that my blood pressure was high and this was the cause. Have you had yours tested recently? I now have some tablets which have helped. Ruth |
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Hello everyone, Last week, after thinking that I suffered with meniers syndrome for the past 20 years or so,(ten of which I have not bothered to see a doctor because they never seemed to help) I went to my doctor's surgery, I saw a locum doctor who said that this bout of dizzyness was called Labyrinthitis! and that I probably had never suffered with meniers, just repete bouts of Lab. He prescribed antibiotics and a nasal spray for my blocked sinuses. Well one week on I feel much better, well compared to last week I do, now I have found this really helpfull site, thanks rich, you see, for so long now people just look at me as though I'm completly mad, and because I look ok they think I'm just 'making it up', any one who suffers with this horrible problem will probably understand me. Today I am feeling much more positive knowing that I am not alone, I am very lucky because I have a wonderful supportive husband and family who help me through the difficult times, and I am going to try ginko biloba and arnica gel today. In the past I have use a motion sickness pill called Aviomine which helped more than stemitil or serc. Also can anyone tell me if ginger helps. Thanks everyone this is definatly going to one of my favourite sites. |
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Hello everyone, Last week, after thinking that I suffered with meniers syndrome for the past 20 years or so,(ten of which I have not bothered to see a doctor because they never seemed to help) I went to my doctor's surgery, I saw a locum doctor who said that this bout of dizzyness was called Labyrinthitis! and that I probably had never suffered with meniers, just repete bouts of Lab. He prescribed antibiotics and a nasal spray for my blocked sinuses. Well one week on I feel much better, well compared to last week I do, now I have found this really helpfull site, thanks rich, you see, for so long now people just look at me as though I'm completly mad, and because I look ok they think I'm just 'making it up', any one who suffers with this horrible problem will probably understand me. Today I am feeling much more positive knowing that I am not alone, I am very lucky because I have a wonderful supportive husband and family who help me through the difficult times, and I am going to try ginko biloba and arnica gel today. In the past I have use a motion sickness pill called Aviomine which helped more than stemitil or serc. Also can anyone tell me if ginger helps. Thanks everyone this is definatly going to one of my favourite sites. |
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Just when I thought I was getting better... last posted on the 14th, I have a turn for the worst. All the usual crap. I'm still thinking positive, but god its hard sometimes. I started drinking Green Tea... suppose to be really good and it is very calming... at thiss stage I'll try anything. |
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Just when I thought I was getting better... last posted on the 14th, I have a turn for the worst. All the usual crap. I'm still thinking positive, but god its hard sometimes. I started drinking Green Tea... suppose to be really good and it is very calming... at thiss stage I'll try anything. |
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Thanks for the info, Ruth. I wish that you were not having similar symptoms but it is good to know that we are not alone! My blood pressure has always been in the normal range (at my appointments, at least) but I will have it checked the next time the pulsating feeling comes back. I don't think that I have actually been at the doctor's when that symptom was occurring. Mary |
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Thanks for the info, Ruth. I wish that you were not having similar symptoms but it is good to know that we are not alone! My blood pressure has always been in the normal range (at my appointments, at least) but I will have it checked the next time the pulsating feeling comes back. I don't think that I have actually been at the doctor's when that symptom was occurring. Mary |
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I wrote earlier and thought I'd give a follow up to my condition which hit me on Oct, 7 - 8... I went to emerg. two more times since then and met an out-of-town doctor who explained the whole thng to me and the results of tests I've had so far; I live in a remote Northern community. He told me that I was taking the Serc wrong. That instead of taking them as prescribed by the first doctor; "only as needed." He told me to take them 3 times day for a week. The Serc seemed to start working after about the 5th day although I wasn't entirely symptom free, the episodes were less severe and less frequent. On a follow up visit to the same out of town doc. He explained that a lot of the other symptoms I was describing were likely due to the anxiety associated with the attacks. I have been nearly symptom free for the past 3 days, that makes six weeks of dizziness. Last week was my first full week back at work but I'm being very careful about not moving my head quickly. I have one more appntmnt for a specialized blood test and then I'm off to the neurologist next month. I'd like to think I'm over this but I've been there before only to have it come back when I was wrestling with my dog. I've been drinking lots of green tea, haven't had a cup of coffee in the last 6 weeks, and have avoided all sugary drinks. I have been able to start eating again an am trying to put back some of the 12lbs I've lost. It's hard to be calm when these attacks hit but I think that's key. But the biggest help for me was the support and reasurance of friends, family, and people like you. Thanks! |
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Hi everyone, I need some advice. Has anyone had to see their dentist for a filling while suffering from this? I am a little worried because after 4 months I feel like I'm getting better but I think I need a filling. I am not in pain. I really would like to know how this will affect me. Thank you so much. Ruth |
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Hello, everybody, Ruth - asked for an advice if it is OK to go to a dentist for a filling. Because I have been suffering from labs/BPPV for long months in a row, I did go to my dentist for usual twice a year cleaning and for fillings as well. Actually, these visits never reversed my slow-slow progress to recovery in every bout of this illness. I let my dentist know, that he should recline his dentist chair very slowly, because I have dizziness problems especially when changing the position of my head in respect to gravitation. My dentist was very attentive to how I was feeling at any time of my visits to him (very good guy!). Kevin, you said: “Just when I thought I was getting better... last posted on the 14th, I have a turn for the worst”. It is exactly how it happened many times with me during recovery process. “Ups” and “downs” even during one day. But the recovery does happening! It is extremely slow, with these upsetting “downs” after encouraging “ups”. I found one very useful advice from a person whose recovery was also very slow. I started a diary of my disease: very brief description of my symptoms, possible triggers, how I felt, what I managed to do this day, other health problems, if they happens. It takes me only 10-15 minutes in the evening to write this information into the diary. Now, when I look at my notes from four-five months ago, I can see, that I have made a remarkable progress since then. It helps to stay positive, believe me! Green tea feels and sounds very calming! Thank you for the idea, guys. Robin , I think it is OK to go scuba diving only when you are completely, with no doubts, 100% symptom-free for at least couple months. I went scuba diving for the first time in my life about two years ago, after being completely symptom free for three years. (even forgot about my long time trouble at that time). It did not have any bad effect on me and I was very proud of myself (actually, I am a little claustrophobic). Everybody, stay positive, at least try to! Anna
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Hello Fellow labbies. Everytine I think i feel I have recovered - I have four or five good days - and then i have break / or just bad day, No matter how I try to will myself to wellness, it just doesn't want to go away. I am destressed. I'm tired of working at only 60%. I was a smart, funny, articulate, conpentent, woman befor this virus and good looking too,,, And Damn it I all want her back, It's been four months aleardy. Some one here. make it fo awat,pray it away if. you think it wii work, I'm even ready to try some witchcraft. Anyone know any.? |
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I have posted before and just wanted to provide an update. I had my first bout with vl on 3/4/04. It has been 8 months and I am still not 100% I am having a lot more good days than bad days. I can actually drink a cup of coffee now with no bad effects. However, I just had a cold and that brought on back some of the dizzy symptoms. Not as bad as before. The Ginko worked for me. The Arnica gel helped (sore neck from trying to hold head stiff so not get dizzy) Now if I start getting symtoms I recognize it as time to chill for a bit. I am pusing myself and need to take a break. Cured I am not, coping I am. Rich |
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Hello, everybody, Hope, all of you had good holidays. Am I right, that Rich, who just updated on Nov.24, is not that Rich, who started this site and who is absolutely symptom free? Thanks God, if somebody got rid of this disaster! My holidays were busy with too much talking, eating and noisy activities. My head hurts of all this. On usual working days I have more time to rest and relax in silence. My balance is getting better, though. Wish you all the best. Anna |
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You are right that that Rich is not this Rich; and I am the owner of the weblog and absolutely symptom free. |
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Hi again: After four months of this, you would think that I would get stronger, mentally, if not physically. However, the last few weeks have been overwhelming. For one week, I had the absolute worst brain fog on a daily basis along with complete equilibrium problems where my body was moving on its own if I stood still. The next week I felt much, much better and thought that I was out of the woods. Then, this week was another bad one with brain fog, etc., etc. I almost feel as bad as I did in the beginning. Sorry to be so down but this illness is almost more than I can take -- it is the sacriest thing that has ever happened to me. I'm wondering how many of you (if you have time to respond) experience this brain fog --- is it common or should I be worried that something else is going on in my brain? I find it very scary -- it seems to happen most often when I am trying to concentrate and talk with someone face to face or even on the phone. It feels like my brain is overloaded and I can barely respond to the person I am talking with. Is this familiar to anyone? And if so, any advice on how to deal with it? Will Ginko help? Thanks for any comments. Mary |
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Hi, everybody, Mary - "brain fog", "poor concentration" are symptoms, that are very common for labs. These are just a few complains of lab sufferers, which I randomly found on this site: _______________________________________________ "Today I have the usual foggy head, slight imbalance".... ___________________________________________ "I think I could say I had 3 really good, almost normal days but alas Sunday afternoon I got really foggy" _______________________________________________ "i guess a list of my total symptoms would be constantly unbalanced brain fog fatigue feel like im lookin thru someone elses glasses fullness in right ear fullness in right temple with in the last 2 weeks my jaw, neck, and upper arm are starting to have soreness i honestly feel like my head is bogged down i forget things ... all our bills were at least a week late this past month... i put the orange juice in the cabinet instead of the fridge on more than one occasion...." ____________________________________________ I would have found many more similar complains, but it is really unpleasant for my eyes and head to scroll through the site (it makes me dizzy). As for me, now, I feel more stable while walking, or standing still, but I really feel kind of “sleepy”, or “drowsy”, or “foggy”, or “drunk” pretty much of the day time. When sometimes I take a look at myself in the mirror, I see a drowsy person with the eyes almost half closed, no sparkle. I still think it will go away eventually, and my head will feel more and more clear (from my previous experience). Bye, Anna |
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Thanks for the reassurance, Anna. I don't know what I would do without this site and support from people like you. Thanks for looking through the site even though it makes you sick (it makes me dizzy and queasy, too). I read on another web site that this can lower your immunity. Have you found that to be the case? Since the beginning of August, I have had two bad colds, one week of an awful flu, and a slight flu bug that hit me this morning. This is unusual for me over the span of four months. Mary |
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Hi All, I went to see the Neurologist on Friday. They did all sorts of hearing and ear tests which all came up fine. My MRI scan was fine too, so the Dr has concluded that I probably had BPPV initially, but there is no remaining physical cause for any continuing dizziness I may be experiencing, and that the cause is probably psychological. I.e. the vertigo triggered some excessive anxiety and after the BPPV resolved, I became super-aware of any signs of dizziness, which in turn caused my anxiety levels to shoot up and amplify the dizzy feelings (it's a bit of a chicken and egg situation). The feelings of lightheadedness, disembodiment, near-fainting etc. are all anxiety related. I am inclined to agree with him on some points because I was extremely anxious. I thought that at any moment the world might suddenly spin out of control and I would fall down in front of a passing car, or be helpless, or that the condition would be permanent. I still have higher than normal anxiety levels which I am trying to fix using relaxation tapes and the like. I still tend to feel dizzy sometimes but it is mostly at work. So if the Dr is right, it's probably becasue I am not home and "safe". But I have another theory as well. I work in a library in a room with lots and lots of dusty old books. Most of the people in the same room have been experiencing a lot of sneezing, sinus problems or are prone to respiratory infections. So I think that maybe we might have a bit of a problem with the air quality in our room. I have done a bit of study on the internet and found that bad air quality can cause a lot of problems, including dizziness. So maybe its physical, maybe its mental, and maybe it's somewhere in between. Food for thought anyway... |
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Hi Labbies... I must say that over the last 2 weeks I have been feeling a bit better... Last week I went for 5 days without many symptoms... then it came back... dizzy, feeling drunk... until today and now I'm feeling good again... seems that 5 months on I am having better days and whats great is they are starting to continue for days at a time.... fingers crossed. I do have a question, has anyone had Acupuncture to relieve the symptoms? I'm thinking of going to have a course and see what happens... I'll keep you all posted. On another note we had the comapny Christmas party on Friday. I wasn't 100% so didn't drink all night. First time I've seen all my staff drunk through a clearish head... apart from the Labs that is.... to be honest I wish i had stayed at home. |
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Hi, dizzyfighters, Nikki, no wonder, you have higher, than normal level of anxiety. Who wouldn't? But I am absolutely sure, that it is opposite to what your doctor said: your "unexplained" dizziness, that has been lasting for so long brings those symptoms of worries, anxiety and finally, depression to a certain extent (like in all people who have to deal with a chronic illness). It looks like when doctors do not have anything more to say, they just attribute your dizziness to your nerves. Probably, what you are right about: fresh air, not dusty air in the library, will make you feel better. As for me, I get out of my laboratory at work for five-seven minutes every one or two hours. The air is rather stuffy in the laboratory, also we have some nasty chemicals. I feel better outside, in the fresh air. Still, I do not believe, that this dusty air is a real cause of your occasional dizziness. Most likely, you are having some aftermaths of the labs (they will be gone, no doubts). Kevin, I had Acupuncture from a Chinese doctor five times (once a month for five months, the doctor comes only once a month to our small university town). People say, that those were too rare sessions to see any improvements quickly. So, frankly speaking, I do not know if those sessions really helped on my way to recovery. I am definitely much better, than, say, 6 months ago. Acupuncture, among other advantages, can help to strengthen your immune systems, so, you can give it a try. Mary, you said, that you had troubles recently with other health issues. It looks like your immune system got weaker, than it used to be. I strongly believe, that both Ginkgo Biloba and multi-vitamins can support your body. I quit acupuncture a month ago, but I am still taking Ginkgo Biloba and Lipo-Flavonoid (a complex of different vitamins). Lipo-Flavonoid is an over-the - counter food supplement, which, like it is written in the enclosed leaflet, “helps to improve blood circulation in the inner ear”). Both Ginkgo Biloba and Lipo-Flavonoid are very safe to take for long time. Wish you all a good week. Anna |
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Hi, dizzyfighters, Nikki, no wonder, you have higher, than normal level of anxiety. Who wouldn't? But I am absolutely sure, that it is opposite to what your doctor said: your "unexplained" dizziness, that has been lasting for so long brings those symptoms of worries, anxiety and finally, depression to a certain extent (like in all people who have to deal with a chronic illness). It looks like when doctors do not have anything more to say, they just attribute your dizziness to your nerves. Probably, what you are right about: fresh air, not dusty air in the library, will make you feel better. As for me, I get out of my laboratory at work for five-seven minutes every one or two hours. The air is rather stuffy in the laboratory, also we have some nasty chemicals. I feel better outside, in the fresh air. Still, I do not believe, that this dusty air is a real cause of your occasional dizziness. Most likely, you are having some aftermaths of the labs (they will be gone, no doubts). Kevin, I had Acupuncture from a Chinese doctor five times (once a month for five months, the doctor comes only once a month to our small university town). People say, that those were too rare sessions to see any improvements quickly. So, frankly speaking, I do not know if those sessions really helped on my way to recovery. I am definitely much better, than, say, 6 months ago. Acupuncture, among other advantages, can help to strengthen your immune systems, so, you can give it a try. Mary, you said, that you had troubles recently with other health issues. It looks like your immune system got weaker, than it used to be. I strongly believe, that both Ginkgo Biloba and multi-vitamins can support your body. I quit acupuncture a month ago, but I am still taking Ginkgo Biloba and Lipo-Flavonoid (a complex of different vitamins). Lipo-Flavonoid is an over-the - counter food supplement, which, like it is written in the enclosed leaflet, “helps to improve blood circulation in the inner ear”). Both Ginkgo Biloba and Lipo-Flavonoid are very safe to take for long time. Wish you all a good week. Anna |
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Hi everyone - I had a bout of VL last January and it took about 4 -6 weeks for me to be able to resume daily activities with any confidence...although "foggyness" has been a companion off and on (particularly when I'm stressed)...I came down with another bout of VL last week...I don't think it's as bad as the first bout and I have actually had a few periods of time when in the last week and a half when I've felt pretty normal - then I have a day (or part of a day) when it's really acting up again...I do know that it is the nature of the beast, but what a drag...I was wondering if anyone else finds that bright lights sets of the dizzies...surprisingly, experiencing a sudden bright light can make me feel like I've just crested a roller-coaster! Tajj |
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Hi everyone, I hope you are having a good day. I'm just wondering if anyone has any experience of train travel while suffering from this labyrinthitis? I'm keen to know how it affected you while travelling as well as after. I'm considering visiting friends but it takes 90 mins by train (3 hours by car). If the journey will cause problems I may make other plans. Thanks very much! |
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Hi everyone, I hope you are having a good day. I'm just wondering if anyone has any experience of train travel while suffering from this labyrinthitis? I'm keen to know how it affected you while travelling as well as after. I'm considering visiting friends but it takes 90 mins by train (3 hours by car). If the journey will cause problems I may make other plans. Thanks very much! |
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Hi, dizzies, Extremely useful to know!!! Read the following information attentively. I bet, you will find most of your own symptoms on the following List: ___________________________________________ List of possible symptoms of inner ear disorders The symptoms of an inner ear or vestibular disorder can vary in severity from person to person. The list of symptoms that is listed below are the most commonly mentioned complaints from the members who visit The Dizzy Lounge Message Boards. Dizziness Some members describe their dizziness as a feeling of being either off balance, feeling faint, a rocking sensation, a sensation that they are moving when they're not, or true vertigo (where the room or objects spin around them). Many also complain of a feeling that they are suddenly pushed either backwards or forwards, and at times feel a strong sudden pull towards the ground. Hearing Hearing loss either slight or severe is very common with an inner ear disorder. Often if hearing loss is not present at the onset of this disorder it may develop later on. Ear noises such as ringing in the ear known as tinnitus or other sounds such as cracking, popping, clicking, or humming sounds are very common. You may also feel a lot of pressure and sometimes pain in your ears. Most have an intolerance to loud noises or the stereo effect where noise is either in front and behind them or to each side at the same time. Vision Disturbance You may experience double or blurry vision along with a sensitivity to bright lights or flashing objects. Some people also have jumping or bouncing vision, poor depth perception, and an increase in their dizziness if they look up or down. Any visual stimulation such as watching TV, moving traffic or reading can also be a trigger for the dizziness. Dark rooms, carpets with alot of pattern, and open spaces are also a very common complaint. Muscle & Joint Pain Headaches, neck pain, and leg stiffness often along with a tingling sensation on the top of their heads, face, arms and sometimes legs. Emotional Anxiety and panic often go hand in hand with this disorder sometimes however it can also lead to depression, so if you are feeling very tired, frustrated, sad, easily cry, and have either lost interest in things you once enjoyed or you just don't think you can handle feeling this way any longer, please seek professional help. Other Symptoms Other complaints from people living with this disorder are, Nausea, motion sickness, forgetfulness, confusion, heat and cold intolerance, slurred speech, flu like symptoms vivid dreams, fatigue, tremors, and clumsiness. -------------------------------------------------- If you are not too afraid to read a lot of "horror stories", you can visit this: The Dizzy Lounge Message Boards (very informative site!). You can post any of your questions there, and they will respond to the best of their knowledge and experience. You will get good advice (much better, than the majority of doctors), very inventive and helpfull coping techniques, and a lot of compassion from people like you, from the dizzies. I am a big fan of that website. Love you all, Anna
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Hi all, I'm another with this Labyrinthitis. I was first thought to have Meniere's but my specialist sayn it Labyrintitis. I started getting dizzy spells about April 2004 and had a big attack in July 2004. Ever since my head feels like it is being compressed in a vice form the outside yet dizzy and light on the inside. I feel my brain has become detached from the inside of my head. I have had basicaly six months of pain, sickness and feeling rotten. I work with computers and at the end of every day I feel like my head is going to explode. I trip, stumble and fall and make so many mistakes it's sad. I hate it. Cheers. |
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Hi all, I'm another with this Labyrinthitis. I was first thought to have Meniere's but my specialist sayn it Labyrintitis. I started getting dizzy spells about April 2004 and had a big attack in July 2004. Ever since my head feels like it is being compressed in a vice form the outside yet dizzy and light on the inside. I feel my brain has become detached from the inside of my head. I have had basicaly six months of pain, sickness and feeling rotten. I work with computers and at the end of every day I feel like my head is going to explode. I trip, stumble and fall and make so many mistakes it's sad. I hate it. Cheers. |
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Ron, try to keep positive, you will get better it just takes time. We can all sympathise with how you are feeling, take comfort that you are not alone. Go back to your doctor and ask to be referred to see a physioherapist for vestibular rehibilitation training(VRT). Alternatively do a search for Cawthorne Cooksey exercises which are basically the same as VRT. I have found these exercises very helpful, in a way it is easier for me to be proactive with this illness rather that just sitting at home letting it control me. I would also suggest that you explain to your work mates how you feel, most people are very understanding! Keep smiling and keep in touch. L |
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Thank goodnes I've found your site and hello to all - I'm sitting heare with a foggy head and even more foggy eyes - having spent the morning in bed feeling awful, made myself get up and check out all possible info online and tripped over this site by chance. Have had VL now on and off for 6 months - luckily it is relatively copeable with but at less than good efficiency. The question I ask - being a heavy wine drinker, is what effect does alocohol have on this disease - Anna has mentioned it a couple of times but not many of you - is it a good odea to give it up completely until fully recovered ( I keep on almost getting better and then Wham - back to the beginning - it ought to be called snakes and ladders disease ) - so comments please - and I'll start on the Green Tea and the multi Vits and am already taking Gingko but will up the dose to 120 - thanks all - Eddie |
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Hi all -- Eddie, I wanted to get back to you. I have had this for over four months now -- same symptoms as most everyone else. After the first month, I had a few days where I thought that I was over it, so I had a few sips of wine when out for dinner one night. It made me feel completely ill -- brought back the symptoms and I had to leave the restaurant. So, I haven't touched any alcohol since. From everything that I have read, it's a good idea to stay away from alcohol and any food or drink that has caffeine in it. I had a bad experience with coffee in the beginning, too, before I knew exactly what illness I had -- it brought on a horrible vertigo episode. I can't believe that I haven't had a glass of wine in over four months -- but I've learned that you have to do anything and everything to reduce the intensity of these symptoms. Hope this helps -- hang in there! Mary |
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Dear labbies, No alcohol please! It is toxic for your inner ears. You have them already disturbed, why should you add up to your problem? I used to enjoy a glass of good wine, with good friends, and nice food. Now, just a single sip of wine, or beer makes me so dizzy and sick to my stomach, that I completely excluded alcohol from my life (at least, until my full recovery). I still like good food with good friends in a quiet environment (no noisy restaurants, I can not handle noise at all). But no alcohol! I still drink coffee (just a very poor habit). I have to cut on it. Everybody’s experience shows: coffee in not right for the inner ear. I promise to quit. Continue to struggle, Anna |
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Hi All, Haven't posted for a couple of weeks but thought I'd share my progress. It's at least 5 months now and things are deffinately better. I've had a string of good days althouh the last 2 haven't been brilliant, but I think thats due to a very stressful situation I am currently going through... family issues. I've learnt that the dizziness can come back at any time so when I feel good, I just relax and love every minute of it. Whilst the symtoms are still there they do not seem as bad as the first few months. I'm off any supplements, Gingko was giving me bad skin, but instead just eat as healthily as possible, fresh veg and fruit. I also drink at least one cup of Green Tea everyday, it tastes awful so its got to be good , right? Alcohol is a big no no in my book. You just don't need it! It's toxic, period. Although a glass of Champaign is ok for a special occassion ;-) Another AMAZING relief, perhaps even a cure, is to press on the middle of your forehead just above the eyes with your index finger. Believe me this does work, although you end up with a red mark or dent on your forehead so suggest not doing it in public for long periods. I discovered this on a journey home, my partner was driving and after about 40 mins I actually felt fantastic! I was almost symptom free for the next few days! Maybe I'm just being mad but I'm sure it works. Try it and let me know how you get on. Seasons Greeting fellow labbies !
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Hi, everyone Kevin, did I understand you correctly, that you have to press your finger for about 40 min on your forehead? Maybe, you are not mad at all. What I know about myself, a very tight band around my ears, or forehead somehow works for me very well. It seems like my unsteadiness diminishes. Actually, I wear these tight bands almost all the time, even at work. My co-workers and the boss know about my problem, and they do not mind. I will try Kevin’s method and will post the results. Anna |
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Hi Anna, That's right, pressure to the forehead, in particular just above the eyes seems to focus the mind and has the effect of regaining balance and relieving the brain fog. I had considered wearing a baseball cap with an object under the rim to apply pressure but I never wear caps, they don't suit me ;-) Let me know progress Anna ;-) |
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Can I just ask everybody - how many of you got this condition after being on a flight? I have heard via word of mouth of several cases where these symptoms have occured after a flight and I am looking into this further as my condition started after a long flight nearly a year ago. Thanks in advance Jill x |
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Hi Jill, Mine was a week after a flight. However I put it down to catching an inner ear infection from a swimming pool whilst on vacation. But i may be wrong. Kevin |
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Hi, everybody, To answer Jill - The symptoms of my fifths bout of labs appeared right after a long flight from Japan to USA. But the first, second, third and fourth bouts were not connected to any airplane flights. Each of these bouts was from 6 to 13 months long and many symptom-free years apart. Now I am recovering from that fifth bout of labs, which was triggered by the long flight from Japan. I think, when your inner ear is already damaged by something (infection, small trauma, weakness of immune system, or previous trouble with inner ears) anything can be a trigger. Air pressure changes in the airplane can definitely add up to the problems listed above. Anna |
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Hi all About the flight thing...if your dizziness starts directly after a flight - and it is a motion related dizzziness (rocking etc) it is most prob not labs but MDDs - do a search for this. BUT if you already had labyrinthitis and went on a flight months/years later, the flight can make you decompensate as the prologed motion is too much for an already sensitive inner ear. Merry Christmas to all xxx |
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Hello fellow Labbies, I have recently found a Doctor who is a Dizzy Specialist, one of the four in New Jersey who is associated with VEDA. She has informed me that I probably have Menier's Disease as opposed to Labrythitis. I am still trying to figure out the difference. I don't seem to have the hearing loss or the "drop down" attacts. I am on month 5 of this problem and I am having more better days, but I still have problems with headaches, dizzy episodes, fatique and brain fog. She told me that Labrythitis is a general term of all the inner ear problems. Can anyone tell me how these differ? Is there an end of Menier's? Lab seems to eventually go away. Is this also true of Meniere's? |
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Thank you all for your comments re flights - was just curious of how common it was as a cause of labs as I seem to be hearing of it a lot. Your comments were very interesting - obviously it is not necessarily always a cause but can often be a trigger. Robin try the site www.menieres.org.uk - to find out about menieres. Merry Christmas to you all Jill x |
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Hello fellow dizzy sufferers. I've been diagnosed with the dreaded labs and have had the symptoms for about 5 weeks now. I feel I'm getting better although it does seem a very very slow process.Recovery seems to feel like 2 steps forward, one back. I was interested in peoples comments about long haul flights. Mine came on 2 days after a long haul flight from London to Hong Kong and have read other peoples experinces who got this after a long haul flight. I think its more likely that the air pressure just exacerbates an existing problem? Guess I'm just trying to find answers like everyone here but it does seem an interesting coincidence. Now for the most part I just feel a bit light headed and only seem to get dizzy spells once in every 3 days. Hopefully a sign I'm starting to recover. When I get the dizzy spells I also feel like I'm going to faint and just start to panic as I am sure you'll all understand. I've started to forget how feeling normal is. Anyway it is a comfort, although rather selfish, to know that other people are suffering the same as me. I hope you all get well soon. Merry Christmas!!! Hugh |
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Robin - it is partially true that labyrinthitis can be used for general ear problems though not by professional specialists. Labyrinthitis is damage or inflammation to the inner ear. Menieres is entirely different - it is caused by fluctuating inner ear fluid - they have no idea why - it is incurable but can be managed by diet etc. Its symptoms are entirely different to labs. Menieres occurs with attacks of vertigo along with tinnitus and hearing loss. Labs is constant and after the inital attack, does not consist of spinning vertigo. So, in summary, by GP's labyrinthitis can be an umbrella term for any unknown dizziness but this is just bad practice as labyrinthitis is a condition in itself and quite different to many other dizzy syndromes. xx |
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Hi, everybody, Robin, from all the information, that I read, I totally agree with Emma on the differences in labs and Menieres. It seems, that even for a non-specialist it is not extremely hard to distingish one from another. "Menieres occurs with attacks of vertigo along with tinnitus and hearing loss." Exactly! Robin, do you have tinnitus and hearing loss? It looks like you don't. I am not sure, that this "dizzy specialist" is qualified enough. Just my opinion. Wish you good holidays. Anna |
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Dear Emma & Anna, I have never had tinnitus or any apparent hearing loss. I am having many more good days than bad and my dizzy spells are becoming just "light headedness". I don't have any real attacts of vertigo anymore. I am still affected by barometric changes, but less now. I think am recovering from Lab, in part, because the cold whether is killing many of the molds and pollens I'm allergic to and the inflamation is going away. I am now going back to the gym and taking my life back from this disease. The doctors have making this ordeal worse. No more drs. I can't get a straight answer anywhere, except here. Thanks to both of you from my heart. Happy Holidays xxx Robin |
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Robin - have you looked at my site www.labyrinthitis.org.uk - maybe (I hope) it'll help you? From what you say, it sounds like labyrinthitis. Good on you for getting your life back. Keep fighting. You'll get there. xxx |
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Just stumbled across this site whilst looking for info in Labs and feel like crying with the immense relief.I have had these symptoms which have now been diagnosed as Labs since beginning of November but it seems like much longer. I am not able to leave the house currently due to the feeling of faintness and sometimes the dizziness. I find the main symptoms seem to alternate. Sometimes I am just so weak and nauseous that I think 'if only the dizziness would come back I could cope with just that' but when it does and the nausea returns its the same.i am currently using 'betashistine' . for me they do not shift the dizziness completely. I worked full time before this and now am so fed up being in the house all day every day.it feels like life is passing me by. I was not aware of this condition before this and was overjoyed that all of you had felt you wanted to contribute to this site as it showed me that I have not been 'imagining' these ailments and that this horrible illness has affected many of you as it has me. I certainly not glad you are all suffering too but its nice to know you are not alone. Thank you to you all for making me see a light at the end of the tunnel. Much appreciated. Kay. |
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Hi, everybody, Just want to say Happy Holidays for everyone who are still fighting this cruel illness and to their families. Wish all of you more patience, patience and patience. One beautiful day you will be absolutely symptom free, your life will come back and you will be proud of yourselves, that you could get through such a dreadful time. Love you all, Anna
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Hi Have just been diagnosed with Lab. I have been feeling really bad for about 6 months and I been to the doctor on numerious occasions- with no diagnosis. Fuzzy head, dizziness, nausea and now a spinning room sensation when I turn over in bed. My doctor has been next to useless but has recently prescribed prochlorpazine- this is working and my dizzy days are better, although I do get room spin a little at night still!! I am relieved to know that it is called something as I thought I was going mad!! I am an assistant head teacher in a secondary school and have not had any tme off of work. Some days are really difficult to cope with and I get really down at times. The worst thing is not knowing when it will go away!! My friend has exactly the same symptoms as me and she has had these symptoms for around 5 months. Can lab be passed on from one person to another??? Thanks Michele |
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Happy 2005, We made it! It's -26c out side this morning and although that seems very cold it's still warmer than yesterday's low which was -38c. Needless to say it's hard to get outside when it gets that cold and staying indoors starts to wear on me after a few hours, up until Oct. 8th I was a very active outdoors kind of person. I went to my neurologist's appnmnt on Dec. 19 as a follow up to numerous doctors visits and tests. Although I have been relatively free of the dizziness I still get episodes of intense anxiety and what Mary described as brain fog when I do get an attack of dizziness. The neurologist assures me that "lab" and all these symptoms go hand in hand. He said that even though I may be over the VL I am probably suffering from the after effects of the disease called BPPV which leaves small particles in the vestibular canal and can bring on quick episodes of dizziness. I was doing alright up to that point and then my mother passed away just after Christmas and I'm not handling my recovery very well anymore. The neurologist said that in the inner ear it takes the body a long time to breakdown and absorb the particles left over from the virus. That in some cases symptoms can last for years but you WILL get better. In MY case, the anxiety, the brain fog, and now the depression have all been magnified by the initial illness. This thing DOES go away eventually, hang in there and don't do anything stupid. As an answer to the question about drinking wine; through experience I have found that even a half glass of wine or half a can of beer will affect me for one to three days afterwards. It's just not worth it. Good luck to all, Happy 2005. |
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Bruno, so sorry about your mother -- hang in there -- you will make it through everything. Try to stay positive although I know that it is very difficult at times. I have a couple of questions for anyone out there with time to respond -- I have these moments when I am lying flat trying to fall asleep where I feel like I (or my brain) am going to "float" away or my brain is short-circuiting or spinning out or something. It is hard to describe -- it is not the vertigo sensation of spinning around but happens when my eyes are closed and I am about to drift off. Has anyone experienced anything like this? I know it sounds bizarre. Also, after five months, I still have problems walking very far -- I just feel unstable like I may not be able to make it back home if I am by myself. Not the spins, but a little off-balance and my legs feel weak and wobbly. Familiar to anyone? That said, I feel completely out of shape with weak muscles -- is it a good idea to try to exercise a little? I was thinking of lifting weights -- light weights while standing or sitting in place. Has anyone tried any light exercise when having a good day? Any info would be appeciated. Happy New Year to everyone! Mary |
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Happy New Year All, Mary, the sensation you describe, floating when you are lying down, sounds very similar to what i am finding. I now have good days and not as good days, 6 months on from my first Vertigo attack. Last night I had a terible night sleep, felt like I was paralyzed everytime I kept waking. Quite scary. Almost like my body was floating several inches off the bed. I also had puslating, twitching on the one side of my head. All in all very freaky and worrying. However I am determind to fight and starting training in my gym every other day. I feel great after exercising... but I am well aware of my condition and make sure I don't over do it. My advise is push yourself but listen to your body and mind and don't over do it! Kevin |
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Happy new year to all. I have been suffering from labs for 5 weeks now. Went tp pick up my wife from work and starting feeling very dizzy ended up in ENT went home that night. my dizzyness has almost gone but I am feeling the foggy head thing. My head feels heavy I get pains in the back of my neck and I get a pressure feeling around my head espically the top of my head, and my right temple gets sore from time to time. which is very worrying, is this common with labs? someone please let me know if anybody gets the head pain/pressure thing. reguards Stuart |
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Hi Stuart, Don't worry too much. Sounds just like the symptoms I have on and off. They are quite worrying, anything with the brain and head is a cause for concern but 6 months on I appreciate that I'm not going to drop down dead or collapse in the street. Try head and neck massage. I found this really helps, I also find that pressing with your thumb on your forehead, just between the eyebrows, can help relieve the symptoms too. Hang in there your not alone. Kev |
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Michele - yes labs can be contagious at the start...but the spinning you describe when turing in bed sounds like BPPV to me - you may have developed this as a result. Bruno - yes labs can cause BPPV - but it was odd for your specialist to say about the particles dissolving as this is true yet BPPV can be cured by the Epley Maneouver which saves simply "waiting". xxx |
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http://www.thedizzylounge.com/ http://p084.ezboard.com/bdizzylounge Here are some web sites for ppl suffering from dizzies. |
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Hello everybody My dizzyness is almost gone but I seem to have a ache in my head which seems to move around my head at different points does anybody else get this. reguards Stuart |
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Hi Stuart Recently I too have developed a really bad ache at the back of my head and it often goes down my neck. It feels like I have been hit in the head with something! Hope this is a symptom and nothing else! Michele |
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Hi, everybody, Stuart, you are a new lab sufferer and you asked about headaches. Headaches are one the most common signs of labs. Most of us, lab sufferers, experience headaches and feeling of pressure on, or inside the head even when dizziness is not that severe, or even when it is gone. Sometimes I feel like my head is so heavy that I cannot carry it around. All kinds of pains, aches and pressures are moving from one spot of my poor head to another. Two MRI tests back in 1995 (after severe bout of labs/BPPV) and in 2004 (severe labs/BPPV bout again) were absolutely normal. Michele is right saying about headaches: "...this is a symptom and nothing else". This is a very tough symptom, so I tried all kinds of pain killing medicine just to get through days, going to weeks, turning into long and long months. But, basically, yes, it is just a symptom. Wish you all to get rid of at least this one symptom. Mary - you said, that you feel completely out of shape. I think that is a great idea to start to exercise little by little. Only do not push yourself too hard: take it easy. Stop whenever you feel tired. Do not walk far away from your house. Remember, that you will have to return back.... Anna
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Hi Everyone, I first posted in March 04. My VL has improved after 10 months. Air pressure changes seem to bring back balance problems. I too thought it would never get better. Be patient. I gave up wine with dinner, even though it was once a month. What about chocolate? Does it bother anyone because of the sugar or caffeine? Thanks for all your support! God Bless Us Everyone! Antoinette |
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hello everyone Hi Anna Thanks for your reply you have cheered me up today, I was thinking about getting a scan done as I thought I was going mad, my headache, it is a slight ache which moves around my head at different points and that along with the pressure in my head as if my brain was swelling was sending me crazy. I also get extreamely tired at times too. Anna does the head pressure and the aches ease as time goes by. reguards Stuart |
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Thanks everyone for your comments and advice. I'll let you know how the exercising goes -- I haven't started yet. I have had three days in a row where my symptoms have improved -- maybe things are easing up a bit after just passing the five month mark. I started taking ginko (in the morning and at night) and a B-complex vitamin every night about a month or so ago -- I think that it has helped and would definitely recommend it as a lot of you already have. Also, when I feel like I may be coming down with something or when my kids are sick -- I take extra vitamin C off and on throughout the day -- that seems to help my immune system which is a good thing since an illness (especially a cold/sore throat) just makes all the lab symptoms worse. Also, I have found that the severity of my foggy-head/spaciness/lightheaded/about to faint problem is pretty related to how much my body sways on its own when I am standing still -- the last few days my body has not swayed as much and I have felt better. Probably sounds completely strange -- but I now use it as my test to see how my day may go -- although even if I start out the day better sometimes things get worse without much notice. Stay strong everyone -- we will get better! Mary |
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Hello one and all. I am emily 27 from the mid-west and I have been suffering from this since 8/11/04. 4 hours after I steped off of a plaine home from a vacation to Cancun took a shower and ended up in the er. Next day went to Dr. He gave me a MRI which came back negative and a ultrasound of heart and stress test. I called my doctor and had him fax me the results and confirmed with my eyes that they were negative. For the first 2 weeks I could not work or stop spinning. Oh and another really scary thing was my vision was tilted, things I knew were in a horzontal positon were in a tilted vision. Was given Meclizine which only succeeded in making me sleep, so weather it worked or not I dont know. Dr then gave me Allegra which like Meclizine is an antihistimine but not as powerful it has helped me since then and I can tell when I do not take it. Well then was sent to my first ENT. He sent me to get a ENG and caloric test. My hearing was perfect but the Caloric test had some results. The only way to describe it was when the put the hot and cold air in my left ear it was like I was in a hurican. In my right ear it was like a slight beeze. Come to find out the damage was in my right ear the tornado response was the correct response. Well my first ENT said that the amount of damage done was not enout to make me feel bad (LOL) and that I was uncurable gave me a pat on the head and sent me on my way. Needless to say I was not happy with this response. So I went to a second ENT. He listend (wow that is great). Looked at all of my test results and said well there is no way to 100% diagnose anyting. All we can do is take what we are told and the test resuts and put together the best picture for a diagnosis. But the way you described things leads me to belive you had a viral infection in your ear and it has cleard up but you are for some reason having a hard time dealing with the damage. At last a good doctor not a nut job. So I am not cutting back on the Allegra it seems that medications you take to make you less dizzy actually can make it longer for you to recover. Your mind just has to find a way to deal with the damage. Not ignor the problem. He also sent me to get VRT (vestibular rehab) My rephab theripist has been very helpful beacue my sympotms are so mild now that I can get on with my day and no one can tell I am sick. But my mind and body still feels the pull to the right side (the side of my damaged ear). After the 4th month the brain fog seemed to clear but was replace with twitching muscles on my legs (anxiety) and pins and needles shooting througout my whole body. That is now clearing up. I have had the depression. Anxiety. Spend most of christmas in room crying. But also seem to have a in general more realistic and mature attitude about life. And appreciate the little things more. That is my story for now. I am glad I found this sit. It makes me feel less alone. It is expecally nice to hear the symptoms of ofthers beacue it lets me know I am not crazy and the successes big or small beacue they give me hope. Thanks to one and all. |
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Hello, dizzifighters, Stuart - Headaches and dizziness go together hand by hand. As the dizziness subsides with time – so the headaches also do. Another question: how much time will it take to completely get rid of headaches after the dizziness has gone. There is no rules, no time frames, it varies from person to person. My headaches are now less frequent and not as severe, as in March 2004, when I had the worst of my dizziness and imbalance. Also, I learned all the triggers of my headaches. In my case the worst triggers are: noises (I hate motors of all kinds, noisy restaurants, super-markets, etc. I have to ware earphones Bose, Inc. almost all the time) and lack of sleep. My advise to you – learn to recognize the triggers of your headaches to make them at least less frequent and severe. You will, probably still have “heavy head” for some time. But it will go away eventually (very slow and gradual process with ups and downs). I was absolutely 100% back to normal (no dizziness, no imbalance, no headaches,) after 11 months of labs/ BPPV back in 1995. Look, guys, Antoinette is on her way to recovery – this is a good news. Good luck, Antoinette! Emily, I read your post very attentively. I have a great compassion to your feelings, as all others on this site, because we are in the same boat. Frankly speaking, I have a lot of bitterness towards many doctors whom I dealt with during re-bouts of my labs. I do not trust them any more. So, I try to search every bit of information available to help myself. What was the most interesting in Emily’s description for me: “My hearing was perfect but the Caloric test had some results. The only way to describe it was when the put the hot and cold air in my left ear it was like I was in a hurican. In my right ear it was like a slight breeze.” This is exactly what happened to me on my latest tests in April 2004. And in the same ears. Emily writes further: “Come to find out the damage was in my right ear the tornado response was the correct response. Well my first ENT said that the amount of damage done was not enough to make me feel bad (LOL) and that I was incurable”. And this is exactly, that I heard from my jerk “specialist”-doctor. Emily, based on some of my research, I have a suspicion, what damage could be both in yours and mine left ears. But before that I have some “strange” questions to you: 1. Does the sound of your own voice bother you (makes you dizzy, bring headaches)? 2. Do other sounds bother you? 3. Do atmospheric pressure and weather changes strongly affect you? Everybody, Chins up. Anna |
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Hello to one and all. Anna I know what you mean I have lost some respect for doctors. My general doctor was never mean but he just did not understand. He even admitted that once he did the MRI and Heart check that he was at the extent of his experience in this area and recommended me to my 1st ent. Now that guy who was supposed to be a specialist was a joke. No comport or understanding just "incurable" as a diagnosis. To all of you who are not happy with your ENT's opinion I recommend to get a 2nd, 3rd, 4th, or 5th until you find someone who you are comphortable with. I was luck that my 2nd doctor thought there is no magic pill that will help me, he takes my calls, makes appts periodically for me just so I can come in and talk about progress and see how doing. Makes me feel better about what is going on though he cannot help me. Anna I have read all of the posts and I am greatly impressed by the responses you give to almost everyone who posts I am sure it has made a difference to many who are going thru this. Makes me feel go to get a response from someone who know really knows what I am going thru. To answer your questions. 1. No my voice does not really bother me. but 2. Sometimes outside sounds bother me. I get startled a lot easier than before and sometimes even my son just talking to me makes my eyes want to pop out. A small theory I have on this would be if you think on it. The course of the original infection must have only lasted regular 6-8 weeks doctors say that it takes to get rid of this. But for some unlucky few of us, the after effects of this do not want to go away. I wonder if the damage to our vestibular system was more of a permanent un-healing damage so we have to learn to compensate for the damage while other heal 100% so they do not have to compensate only deal with the infection while it is happening. We with permanent damage have to spend weeks then months sometimes years re teaching our brains to balance our bodies. 3 I have also been paying attention to things like humidity and the barometric pressure. I have noticed days that were good when they were up, down, one up one down. That seems to play as far as I have observed little to no role. What I have noticed was the worst days I have are not when it is stuck at a particular up or down. But when the humidity or barometric pressure is making a significant change, such as raining for days the when it starts to quit and the humidity is going down I am tiltier. Or the barometric pressure is rising and I am tiltier. Seems like it is worse when it changes maybe I feel better when it is steady weather but when it changes the pressure changes and I have to compensate all over again. If that is the case as all of my thoughts are just that thought then I live in the wrong place for a disorder like this. Anna I would greatly like to hear your answers to your questions because that would give me some insight to the way you are feeling. You did have a point on the caloric test. Do you have hearing loss. Was that the only test that had any results for you. Well maybe not official results but you definitely noticed a difference. Oh and do you have any or much nystagmus that is how the doctors base the caloric test results I think and after the first month I had little to no nystagmus anymore but what I felt on the results was defiantly a difference. I am not meaning to exclude anyone else. If anyone else has answers to the questions or had a ENG caloric test with results (and if you have not you should call you ENT about getting one) fill me in on your results. I have made this a personal hobby since I seem to be in the thick of it and would love to hear about your experiences. To another day of dizzies/tilties/jerkies/fuzzies and foggies. Emily |
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Hi Emily - my website is the labyrinthitis.org.uk one and too have inner ear dysfunction frm labyrinthitis - my caloric test showed left inner ear damage, no hearing loss. Im glad you are improving - thanks for your post - I know only too well the horrors of vestibular problems - it has totally changed my life - but now that im under a good specialist (you are right you have to search) I feel more supported and confident of a recovery. Am doing VRT and am due to have CBT. xx |
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PS) Thanks rich for putting the external link on! :-) xx |
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You're welcome. By the way, that's the first boxed external link anywhere on Sharp Blue! I think I shall have to make a third comments page soon, or maybe even add a whole labyrinthitis weblog. |
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Hello, Just thought I'd drop a quick post for those who have been following my progress. I've been suffering for 6 months now and had many more good days, almost 100% normal. However I still haven't had a complete week without symptoms. Most unfortuantely last night was not a good night. Here in the UK we are experiencing a strong weather front with wind speeds up to 90mph. This is deffinately effecting my head, I can feel the difference in air pressure. I started feeling very spaced out last night and got very anxious as i thought I was about to start spinning out again, this time unlike the last few months, it felt quite bad. Therefore i didn't sleep particularly well and this morning have bad brain fog. I would expect most suffers can relate to this, I'm posting the experinces because I know it will help many other people, like the posts that have gone before have helped me so much. Thanks x |
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I feel priviledged Rich!!! Yep re:making a new page - unfortunately there are loads out there suffering this cruel disorder... xx |
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I am so happy to have found this site today. I blew my nose trying to clear out a bad cold, sinitus which I had been suffering from for over a week, when I suddenly went deaf in the left ear, then lost my balance, then started vomiting. I spent over 2 days in the hospital with the room spinning. Couldnt stand the TV stations like CNN with that banner that moves at the bottom of the screen. I spent 3 wks in bed mostly, with brief moments to try to cook, etc. What a Christmas. I was able to go back to work 1/3, but still experience many of the symptoms I see here. I too am foggy, have an out of body type feeling when walking and dont feel secure walking across a parking lot or around crowds of people. I am into the 5th week now. My hearing has gradually come back, but I still have tinnitus. I am also very tired and want to go to bed as soon as possible every night. No amount of rest seems to make me feel like my old self. I am so glad to read of everyone's experiences. The doctors wont tell me much, just that it will take time. Thank you Rich for this site. |
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Hi, Thank you to all for the information on this dizzy condition, I am learning even more than I knew before. What a road we have to travel, I never would have thought. Gabi |
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Hi, everybody, Somehow, I am in a positive spirit today. Because, like Bruno said, “this thing DOES go away eventually”. After more, than 14 months of my fifth bout of labs/BPPV, or whatever it is, I started feeling kind of my old self. Not normal yet, not yet, but “kind of”. Also, I read, that Kevin is doing almost OK after 6 months of fighting the disease (isn’t it great?). Emma (I am sure, that you will not be angry with me if I quote the update of her progress from her website labyrinthitis.org.uk: UPDATE (24th December 2004). Emma has finally seen a Neurotologist - diagnosed with left inner ear damage - same as Ilia! She is on their VRT programme and is scheduled to have CBT. They suspect the anxiety/depression (although not too severe) has hindered Emma's recovery but also clearly said that dysfunction from Labyrinthitis can indeed go on for a long time and they don't know why people recover at different rates. Ilia recovered at the 3yr mark so Emma is not there yet! She's hoping 2005 will see big improvements for her. In the meantime, she plods on through the "Labyrinthitis journey" - determined to beat it in the end. Antoinette admitted, her VL has improved after 10 months, although she too thought it would never get better. Others are in the progress and fighting. As for Linda. Linda, you are probably suffering from perilymphatic (perylimph fistula) on your left ear. Your symptoms are so obvious and so typical for this disorder, that I just wonder: why did not doctors immediately provide you with the right diagnoses? The good thing is, that fistulas caused by so called Valsalva manouvers (for example, blowing the nose) usually heals by themselves with time and rest. You should not bend down, not carry heavy things, avoid fast movements, giving the fistula a chance to heal. You better read yourself the link http://www.dizziness-and-balance.com/disorders/unilat/fistula.html Just a brief abstract from this article, written by a very renowned specialist in this area Dr. T. Hain: Patients with fistula should avoid · Lifting · Straining · Bending over · Popping the ears · Forceful nose blowing · Air pressure changes such as due to air travel · High speed elevators · Scuba diving · Loud noises (such as your own singing or a musical instrument) Emily, somehow I suspect fistulas in your left ear and in my left ear. I do not have time right now to explain, why I think so, but I will do it later tonight, or tomorrow. The difference with Linda, that for both of us (Emily and Anna) we did not have hearing loss in the left ear, but Linda did (it restored). Fistulas can be without and with hearing loss. Anna’s and Emily’s fistula could be caused by VL plus changes in ear pressure while airplane travel (Emily) or vigorous exercises (Brandt-Daroff exercises to remove ear rocks from labyrinth). In Anna’s case, the exercises were prescribed by a local ENT doctor without any mentioning to be careful with the head with already damaged labyrinth. Good luck to all of you, guys. Advice again: Just try to learn more about your condition. Do not jump immediately to everything, that doctors tell you. Check the information available on the Internet and compare it to your symptoms. Anna
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Hey everyone. Having a good couple of days. Not dizzi free but not as bad as most. I have little time but will post more tommorow. I am looking forwart to what you have to say Anna. I am amazed how much the ppl who have been thru this seem to have more information about the problem and more reasonable thought than the doctors. I wonder if the ear and its parts are just to small and delicate for doctors to really know what is happening in there. Funny when I got my ENG and caloric test I asked the audiologist and the ENT that orderd it if they had ever had it done. Nope, to bad it really would help them to sympathize if only for a little bit. Oh well will post more tommorow at lunch. off to bed. Emily |
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Good idea Anna - to write how everyone is doing and that although many of us are not yet cured, we are fighting and determined however hard it is at times! Hugs to all xx |
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I've just come back from the hospital having had an MRI and feeling very sorry for myself. I've been suffering with this stupid problem for a year and two months and I am going steadily mad! It was great to find this website and check off the symptons that other people are suffering with - I am not the only one. I only suffered with vertigo for the first three weeks, and although I was never actually sick I felt very nauseous for most of the time. Moving my head, and on bad days,moving my eyes seemed to trigger the attack. My symptons slowly improved over a couple of weeks but then they came back without the vertigo but I feel that I am living on a ship most of the time. I feel unwell, have a 'bad' head with vision problems and concentration problems. I've given up wearing my contact lenses as it makes my left eye uncomfortable. The left side of my head, around my eye and my ear feels blocked and stuffy. I also seem to get confused when I am speaking and swap words - I must seem really stupid at times! I get very tired and generally am very grumpy! (I am such a pleasure to be around). And I can't even drink any alcohol - that's just not normal!! I am going to read this in greater detail and hopefully give some of your advice a go. Thank you so much. |
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Hi, everyone, Caz, it looks like you will have normal MRI. Also it souns like you have a problem mostly on your left side (labs, or perilymph fistula). Question for Caz: did you ever have ENG done? If yes, can you remember what was your reaction on hot and cold water on the left and on the right side? Guys, please, do not kill me, if I tell you the following. I suspect, that those who suffer from labyrinthitis for longer, than 6-7 months, have not only labyrinthitis, but also a perilymph fistula, i.e. abnormal opening (tear)between the middle and the inner ear. To my understanding, it can heal much longer, than just pure labyrinthitis. I know, that it sounds scary for a person to hear, that he, or she has a hole in the ear (not in the eardrum! different! look at the anatomy of the ear). But anyway, doctors are not helpful with pure labyrinthitis, and with perilymph fistulas and accompanying labs as well. But if somebody from us were diagnosed with fistula, then he, or she would behave a little different. He, or she would avoid the following activities: · Lifting · Straining · Bending over · Popping the ears · Forceful nose blowing · Air pressure changes such as due to air travel · High speed elevators · Scuba diving · Loud noises (such as your own singing or a musical instrument) So, in this case she, or he would recover faster! If only doctors could be more intelligent, could read more, and ask more questions from their patients! Sorry for the bitterness. Anna |
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Hi everybody Thanks anna for your coments this is my 6th week now I am not dizzy anymore but I keep getting aches and pain all the time espically in my upper arm. Today I am feeling the heavy head thing and when I get tired I get a sore head accroiss my forehead. Had a cat scan last monday got the all clear. i was told I had labyrinthitis but the virus has from the inner ear to the surface of the brain as my head feels heavy and if I look up or down I get a pressure feeling in my head and also when I touch my head I feel like my brain is swollen does anybody else get this. Has anybody hear of the virus moving to the surface of the brain. Reguards Stuart |
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Hi Stuart, I don't think its too much to worry about. Sounds like many of the symptoms associated with Labs. Sometimes I felt like the top half of my brain was swelling and could only be relieved if i took the top part of my skull off. Not a good idea to try at home though ;-) Also the sore forehead was also common. You will probably find that you will have many different symptoms effecting not just your head but other parts of your body. The most unual I had was pulsating veins on the side of my head. I'm talking as though I'm over this after almost 6 months of suffering but to be honest I still get the odd day of symptoms, but now they are between alot more better days. Kevin |
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Hi, everybody, Stuart: "i was told I had labyrinthitis but the virus has from the inner ear to the surface of the brain as my head feels heavy and if I look up or down" I did not understand: Do you think, that the virus spread from your inner ear to the surface of your brain, or was it a doctor who told you that? (Not correct, of course) In any case, I agree with Kevin, that most likely it is nothing to worry about. I had this "swelling brain sensation", as well as a feeling like my brain in going to explode inside my scull. Also, all the left side of my face(left - is my bad ear) felt extremely heavy and hugely enlarged. I even watched myself in the mirror, but nope, nothing, just my regular normal face. But I felt like the left side of my face was twice as big, as the right side - just a very scary, abnormal sensation. Very often my forehead was very sore and kind of itchy-burning from the inside. I used cold packs to the forehead in this case. "my head feels heavy and if I look up or down" My head was so "heavy" at my worst time, that I cannot take it out of the pillow, like it weighed tons and tons. You would not beleive me, but when I barely grag myself to the bathroom, I hold this terrible head with two hands, otherwise it would droop to the left shoulder, or down to the breast. Just a distorted sensation from my impared labyrinth, but isn't it scary? Stuart, hold on, you do not have a brain tumour, or a a brain inflammation. It is just how this labs tortures its victims.It will get better. Probably, you are getting through the worst of your pains right now. Best wishes to everybody. Anna |
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Hi all. Anna - I have been tested by the top place in the Uk for this and they tell me I have purely Labs (inner ear dys) nt fistula. Im afraid it is not uncommon AT ALL for people to have the after effects of Labs for months/years. Not saying fistula cannot happen but it is not the case for all long term Lab cases xx |
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Hi, guys, Emma, thank you for the reply, this part is quite convincing -"Not saying fistula cannot happen but it is not the case for all long term Lab cases" But do you agree with me, that if a person have a fistula, he, or she should be very careful with many kinds of physical activities, including VRT? Can you also tell me, if VRT (at that place where you now receive it) can be also designed for people with PLF (perilymph fistula)? I still strongly suspect PLF in my left ear, because I have a very specific symptom, that, as appeared, very few dizzy people complain to: Rythmic, or loud noises (such as my own singing, shouting, or a musical instrument)make me literally spinning and nauseous. In special literature they call it Tullio's phenomenon, and it is very specific to PLF. Emma - another question. At this top in UK place did you have a specific "fistula test"? There is such a test, but I did not find anybody who had it. Bye, Anna
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Hi All, I pop in often to check out the site and see how ppl are going, so I thought I leave an update this time. I seem to have made an almost full recovery for whatever it was (Lab/BPPV/stress). The only time I feel a bit wonky is when I get tired or have a bug or something. I had a very minor spin on waking the other day, but that was from a few nights of sleep deprivation courtesy of a new puppy we just got! I have just had a three weeks holiday from work so I think that has helped, as I mentioned in my last post, I suspect I am allergic to something at work which makes me feel dizzier. I have also been taking lots of naps. I now go to the gym regularly and have a pretty normal lifestyle - I still can't go out and paint the town red as I get tired by about 11:00pm, but that's ok. The only thing I am trying to overcome is a remaining mental block about going anywhere alone, although I have been making an effort to do just that. Hang in there guys it does get better! (now the pessimist in me says that by saying I'm better means I will almost certainly have a relapse hee hee) |
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Hi Anna. Yes I agree with you that you have to be careful with activities and fistula - but Im afraid I really dont know much about that condition... All I was saying was that Lab can indeed, on its own, go on for a long time... Didnt have a "fistula test" but the testing they did do apparently checks for fistula. As quoted from Veda: "Your physician will also use information from your history and physical examination, as well as objective vestibular and audiometric test results, to assist in establishing the diagnosis of perilymph fistulas". Hisotry is important in many inner ear cases and most commonly fistulas are caused by head injury or strenuous work. They also have a typical symptom pattern which differs from labyrinthitis. I have heard before about dizziness being worsened by noise like you explain and presume it is fistulas that the article was talking about but cant remember...this symptoms does sound different to labyrinthitis though...and v v often fistuals affect hearing in some way. xxx |
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Hi, again, Thanks, Emma, Everything, that you said is absolutely correct. Agree with every word. My personal history of inner ear disorders is quite long and tricky. But analizing everything that was in the past and what is happening to me now, in respect to my head and ears, I still suspect a fistula in my left ear. It is obvious, that such a diagnosis is quite rare, maybe even controversial, because I still did not find anybody who personally was diagnosed with perilymph fistula and had a successful, or say, unsucessful surgery for "patching" it. OK, forget it. Let's talk about labyrinthitis: with, or without fistula, it sucks. Nikki,you are still doing better, although you said: Hang in there guys it does get better! (now the pessimist in me says that by saying I'm better means I will almost certainly have a relapse hee hee) Nikki: I am exactly like you are. I am worse today, right after I wrote on Jan 11, that "After more, than 14 months of my fifth bout of labs/BPPV, or whatever it is, I started feeling kind of my old self. Not normal yet, not yet, but “kind of”. I know why I am feeling worse - because we had a huge thunderstorm: with real thunder, lightnings and a lot of pouring water, here in Oklahoma. I am a live barometer, because I could predict it was coming. Hugs, Anna
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Hi all, I found this site while researching labrynthitis...it's weird how this turned into a support group. Anyway, my story is that I'm 29, from Toronto Canada and I'm a sufferer of acute lab. I had it 4 years ago which last two days, then a year later which also lasted only 2 days. Both times it was pure vertigo, throwing up, bed-ridden etc. I just got it last week again, and I'm still recovering...essentially for the last week I have been dizzy, headachy and without any energy. The worst of it was over within the first 2 days, and it seems like I'm only 65% better...with no improvement each day. The worse part is that I just started a new job for 2005...I worked 2 days and then called in sick for a week. I just quit my old job of 5 years to take this position. I'm afraid I'll get laid off very soon. As well, I'm doing my MBA part-time at night, so I won't be able to attend classes this weekend either...so I'm worried about that either. When people say they take 6-8 weeks to recover, does that mean they have bouts of vertigo on and off, or they stay at like 70% for a few weeks and slowly get better? Right now, I'm house-ridden, I can't really go out (although I did drive 10 kilometers which was a bad idea).... I'm planning to get some ginko and bonine tomorrow. I really hate this, I feel like my life is put on hold...I will probably lose my job, and have to put my MBA on hold as well....I can't believe there isn't a cure for this..... Henry |
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Hi everyone: The fistula info. is very interesting. Anna, the list that you gave for things that you should not do included a bunch of things that make my symptoms worse like bending over, lifting things, straining, elevators (even low speed rides completely throw me off -- I haven't been on one for a few months -- escalators, too) and loud noises. I finally made the connection between loud noises and an increase in dizzy sensations included a period of complete brain fog very shortly after a loud noise. For me, it is things like my dog's very loud bark or buzzers, loud music, etc. It seems like my ears have been extremely sensitive to noise throughout this whole ordeal but I only recently made the connection with the onset of more intense dizziness/total brain fog -- as in I have to stop talking or doing anything b/c I feel like I am going to pass out and like my brain has shut down -- and loud sounds. Back in October, my hearing tested fine although my ENG showed abnormalities with my right ear which led my ENT to conclude that everything was caused by labs. or vestibular neuritis. I started using ear plugs on and off during the day before Christmas and they have really helped. I wrote last week that I had had a few good days and I must say that I feel like I may be out of the woods. I almost hate to say that -- before, it has always come back. Anyway, I am going to read more about fistulas although it sounds like they are pretty rare. Will pass along any info. Hang tough everyone! |
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Hi to All Hi Anna & Kevin My consultant told me about the virus moving to the brain and that was causing the strange heavy head feeling. I get pressure at the top of my noise if I look up and down. These strange feelings in my head are driving me mad. If I put pressure on the top of my head it feels like my brain is swollen, very strange. I had aches and pains in every bone in my body at the start of the week now I get it at the top of my arms. I always feel worse in the mornings. For the first 3 weeks I had this feeling as if I was walking on air then it changed to this feeling of pressure. Thinking of everybody Reguards Stuart |
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Stuart, I do sympathise with you completely. This virus is cruel, only if you have suffered can you really understand what its like. As I have already mentioned its at least 6 months now since I got the virus and its a very long road to recovery. I have a holiday planned for June this year which involves 48 hours of flying within a three week period. I hate flying and the stress really gets to me so I need to have my full strength. I now look back at the last 6 months and see the progress I have made and I am determined to get to 100% in the next 5 months before my vacation. I think its safer to think in months rather than weeks or days about recovery. Around month 3 I started to get really despondent about any recovery, it was really getting to me. The key is to think positive and stay as active as possible, its the only way to get through this an I know its not easy. Thinking positive when your brain is malfunctioning is pretty tricky. Anyway best of luck, you will kick this virus eventually, remember stay positive. Best regards Kevin |
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Wow, it’s getting crowded here. I really have something to say to everybody. Just no time right now - I am on a full time job. I will return to this site in the evening. (Mary, we will definitely continue the discussion on PLF, I have more to say and to ask you) Anna |
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Anna - you do well to work full time - v well :-) Henry - no they generally mean 6-8 weeks and its a gradual recovery - labyrinthitis does not normally take the form of spells (as in fine then worse - the bad vertigo at the start is normal). Hang in there xx |
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Thanks for the reply Em. Well, it's only been 8 days, and I'm feeling about 90%. I think I'm going into work tomorrow. I drove about 20 kms today, and it was fine...but there's still a slight imbalance going on, and I do still feel sick at times. And yea, I'm more sensitive to sounds now.... I bought ginkgo, and I'm going to try 100mg two times a day. Hopefully it'll help. It's just nice to see I'm not alone on this.... |
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Good evening, everybody, I finally got in front of the computer. Just to update on my current situation.Yes, I am working full time, a long 8-hour day. I am much-much better now, than I was back in March 2004, when I was practically bedridden with dizziness, huge imbalance and incredible headaches. My head was so “heavy”, that I just could not keep it upright. My total disability lasted for 5 months, then I started to work for 2 hours, and increased the load gradually to 8 hours in a couple of months. Unfortunately, I cannot admit, that I am a great employee with my condition right now (I am a quality control engineer and conduct some research in material science). But I can work! I can drive myself short distances to and from work. I explained my condition to my boss and co-workers, they are quite cooperative and supportive. Otherwise, it would be very hard for me to keep my job. Because I am not as good, as strong, and not a hard worker as I used to be. This illness takes all my strength. I am still not 100% back to normal, maybe somewhere from 70 to 80% of my old self. Some days I am doing better and those days I am more optimistic. Some days I get worse, because of the weather changes, colds, or just “for no particular reason”, and those days send me back all my frustration, anger, “sorry for myself” feelings. I try to take it easy on “bad” days, and force myself to think before falling asleep: “It will be another day, and it will be better”…… Stuart - you said: “My consultant told me about the virus moving to the brain and that was causing the strange heavy head feeling”. Of course, I am not a physician, but I knew before, and I checked it on the Internet, that viral, or bacterial meningitis (brain infection) is characterized by far worse condition, than you have now. It must be high fever first of all, even possible un-conscience. Yes, headaches and stiff neck are present in meningitis, but high fever first … Stuart’s words “For the first 3 weeks I had this feeling as if I was walking on air “… I call it “walking on pillows”, or “walking on clouds”. It happens because your impaired balance. Now imagine, if you were absolutely healthy, but would be really forced to walk in pillows all day long – all you muscles would ache! Put heavy weights on your head and try to keep it upright – so, you shoulders would ache and your neck would be stiff. That is why you, Stuart, feel this way right now. Henry – The good part is, that you already twice got rid of the symptoms four years and three years ago. Maybe, this time it will take longer. How long – nobody knows, maybe, just three-four weeks…. I completely understand and sympathize to your worries about your new job and MBA degree. But, really “what shall be – shall be”. Think about your health first. Keep us updated. Mary – Several “funny” questions to you: 1. Do you (or did you) feel “sour” taste, or kind or tingling on the left, or right side of your tongue? 2. Did you have ENG with caloric test? Can you remember how you feel when cold water was pumped into your left (right) ear? Mary, check this site for PLF http://www.dizziness-and-balance.com/disorders/unilat/fistula.html Mary, I use earphones from Bose.com with newest electronic noise-canceling technology. They are expansive, but they just save my life, because I am sensitive to noises to the point of throwing up. Bye now, Anna |
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it's been 4 months now. I'M NOT SURE HOW MUCH LONGER I CAN TAKE IT! They tell me the INTENSE anxiety and confussion are sypmtoms of depression and now have me taking Clonozepam and Effexor. HELP! |
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Hello Fellow Labbies, I am feeling much better that last month at this time. There appears to be an end of this virus in sight. I am approching 6 months now, and the dizzy attacks no longer force be back to bed. I feel like myself again. They have become more of an annoyance, and I can handle them. I am able to concentrate at work again. The weather still get me anxious, but it's getting better all the time. I got the Labs at the end of July 2004. I was so sick for the first two month, I didn't want to get out of bed. I was a wreak at work. But I looked fine. I went to every kind of Dr. I could find. My CAT scan was fine, the MRI was fine, the ENT said I was fine. They all told me the same thing, it will take time. I couldn't believe there wasn't anything I could do to help me. This website has been the best souce of information about labs that I could find. Anna, Emma and Ilia seem to know more than the Doctors. We forget that medicine is still not an exact science. When the doctors can cure you, they get vague. Everytime I feel well for a few days I get excited and think I'm cured. The truth is I am getting more good days than bad. The dizzy attacks are no longer "out of body experiences". I have started taking multi-vitemins, B-complex, calcium and ginko every day to build up my immune system. Valium does stop the spinning, but I'm very careful with it. My GP gave me a sea-sickness patch called Transderm Scope. I cut it in half and put it behind my ear. I think it helps. I am back at the gym, and I know that is helping, if no other reason (other than the growth in my hips) that it gives me a sense of some control in my life. I have found that I had to force myself to get up and around, but the movement often makes the dizzy feeling go away. The depression that was setting in after 4 months was overwhelming. Going to the gym is also helping my attitude. Most of us will get 100% well again and we can't lose site of that fact. Remember that at this web site we are hearing about some of the most complex and accute cases of VL. This is a really horrible virus, but, for most if us, it will pass and you'll have your life back. I know I will never take my health for granted again. Happy New Year |
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Glad you are getting there Robin :-) I wanted to ask everyone - who here has tried gingko and have you had success with it? Saw an article on the wb by someone who was cured by it...may give it a go!!! xx |
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This is a different rich than the moderator, just checking in. I started with my VL in March 2004. I am 99.99 percent better. There are times when my left ear needs a good massage behind the jawbone (try it). I am the Rich that recommended the Arnica Gel and Ginko from Page 1. They worked on me and on other people. Everyone that is suffering keep the faith I have been there and it sucks big time. However, take the B, Ginkgo and don't tire yourself out, Rest as much as your body needs and STAY AWAY from caffeine. (Coffee, Tea, Red Bull, Soda...) Keep your attitude upbeat and get darned stubborn with yourself that you will beat this thing. |
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Great news, Robin! I got labs around the same time as you -- the very end of July. I think that I am improving too -- the last week has been much better (much less body swaying, brain fog, etc.) -- today has not been as great but that's how it goes. Maybe we are almost at the end of this horrible ordeal! Emma -- I started taking Ginko in early December along with a complex B vitamin. I take 60 mg in the morning and 60 at night with the B vitamin. I also take vitamin C off and on throughout the day if I feel like I am fighting a bug. I think that this supplement ritual has definitely helped me -- I think that most people take more Ginko than I do -- I actually may increase my dosage. I know that my immune system is stronger, and the Ginko may actually be doing what it is supposed to -- increase blood flow to your brain and extremeties. I was a little hesitant to try it as I knew nothing about it and prefer not to take supplements or medications unless I have to. Now I wish that I had started a lot sooner. Anna -- thanks for your reply. I haven't noticed any kind of taste or tingling sensation on my tongue. I did have an ENG done -- the test included wearing the goggles and having hot and cold air blown into my ears (not water). I remember that I felt more dizzy and sick when it was done in my left ear than my right although my right ear showed the abnormalities (not my left) -- my doctor said that the feeling I got when my left ear was tested was normal -- the test is supposed to cause that response. Thanks for the advice about the headphones! |
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I have had recurring bouts of labyrinthitis for the last 15 years. For those in their first year: the general pattern is that the episodes become spaced further and further apart, and milder, as you age. This has been true for me. They were more frequent and worse in the first few years. I know that caffeine is contraindicated in general, but for some odd reason it helps me during an episode. I normally do not drink caffeinated drinks at all, but when I start to feel the symptoms coming on, 2 cans of coca-cola seem to help. It may helps me to function. Best of luck to all of you and thanks for creating this page. |
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Hi Everyone I am feeling a bit better the last two days, very tired no dizzyness, not quiet 100% balanced but getting there, apart from a horrible feeling in my head espically looking up and down and when I walk I get pains around my head and feeling lightheaded too. Did anybody get this ache feeling in their head with every footstep espically looking up. Hope every gets over this soon. Reguards Stuart |
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I need some advice!! I have been taking Prochlorperazine for the past 3 weeks. I have been feeling almost back to normal- like me again!! I have decided to come off the prochlorperazine and start taking Ginko- is this a good idea?? Thanks Michele |
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Yes - because vestibular suppressants like the drug you mention are a big no no as they do not allow the brain to compensate. You may feel "normal" but often when you come off the drug, the symptoms will return - annoying but necessary am afraid to recover in the long term. You just have to grin and bear the dizziness. Gingko is ok as it does not sedate the balance system xx |
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So much for the recovery -- today has been a bad one with total brain fog, lightheadedness, body swaying. Tried to go to the store and thought another bad vertigo episode was going to happen so I left as soon as I could. Is anyone else trying to raise young children through this ordeal??? If so, how are you coping??? My poor kids have suffered through over five months of me feeling awful and not being able to take them places and do basic things with them. Also, does riding in a car still bother anyone who has had this for months or more??? I wonder if the car ride I took yesterday brought on worse symptoms (I didn't actually drive as I usually feel too spaced out to drive more than a 5-10 blocks). Sorry for the complaints -- hope someone out there is having a better day! Mary |
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Yep I feel dodgy in cars esp if the roads are twisty! Keep smiling mary! xx |
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Hello, I am getting better but am now scared beacue I am starting to get a cold, nasial mucas, soar throat, tired, I am a bit scared by this. It only seems to make me a little bit more off balance but it is only the start of the cold. I remember going thru a month long cold/sinus infection before I got my lab in August of last year. Only now within the last 2 weeks have been getting somewhat better. Has anyone else had a cold and how did it effect you? Emily |
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Hi everyone! I've been reading all of your postings about dizziness, positional vertigo, hearing loss, ringing in ears, etc. I suffered for years from positional vertigo and went thru many "doctors" who put me through unnecessary surgeries, treatments and tests. I finally found the Shea Clinic in Memphis, Tennessee with Dr. John Shea who is world renowned for his innovative techniques he has developed to help inner ear sufferers. He has dedicated his life to helping us "dizzies". People come from other countries and states and have so many success stories about Shea Clinic. I should know, he gave me back my life. Check his website out which is www.sheaclinic.com and e-mail him. He answers all e-mails and can tell if he can help you or tell you who can help you in your area if you cannot get to him. Trust me, he is the most kind, gentle and intelligent doctor I have ever met. He actually believes us "dizzies" and actually wants to help us. Check him out. You never know what may happen. Good Luck to all of you and e-mail me if you have any questions. charlene |
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Emily - everyone is different but most lab sufferers get affected by colds - will be honest...I am bad with colds - normally towards the end when everything is draining (lovely!!). But although I am bad for about 1 week after, my balance/diz always goes back to how it was - so fear not!!! You may be fine but I am just warning you its v v normal to get worse dizziness with colds with Lab - so DO NOT panic. xx |
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Hi, everybody, Stuart - to be honest, my head often feels "heavy" and "sqeezed". Sometimes it is better, sometimes it gets really bad, especially when I am stressed, or did not sleep well. There are times when my head is sensitive to my own steps, like the pain goes from my legs right into the forehead. I still never look up, because it makes me feel sore right between the eyes, and very unsteady at times. Mary - and EVERYBODY on this site. There is a good website Dizzy Lounge. Find their message board and ask any question. There are many very good "dizzy" people there, they will share a lot of coping strategies with you. Actually, they will kindly answer even the "funniest" of your questions, and will listen and respond to your story and to your unique situation. I recommend this site to all of you. Bruno – I am sorry, that you feel so depressed. Unfortunately, that is how many people feel after dealing with this disease for several months (or even before this time!). Antidepressants helped me a lot. I personally take Paxil, now only 25 mg. But at my worst time I took it 50 mg a day. It is very individual. Maybe Effexor will work for you. Do not expect immediate results from any of antidepressants. It is extremely bad if you do not have enough sleep because of pains, anxiety, or both. Do ANYTHING to get as much sleep as possible. From my personal experience – there is one really magic pill Ambien (I do not know if they have it in the UK, or Canada, or Australia). Currently, I have been taking it for several months, no habituation. I know this for sure, because I stopped taking Ambien in 1995, as soon as I felt better in my previous bout of labs. I did not take it for almost nine years, because I did not need it. It was designed for a good night sleep, with no bad consequences in the morning. Charlene – I checked the information about Dr. Shea and his clinic. If you say, he answers all E-mail messages, I will try to contact him by E-mail first. Thank you for the information. Anna |
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Em, Thank you for the reply. You read my mind beacue I was to the point where I wanted to panic. Instead I am going to try and keep my cool and just ride this out. Thanks a friendly positive voice can mean a whole lot. Emily |
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I am writing on behalf of my husband who has started with severe ringing in the ears in May 2004. This then progressed on to dizziness and vomiting. He has had all the usual check ups. The ringing in the ears has gone, but he gets a severe vertigo attack with vomitting every two weeks. He has to lie down immediately for about 12 hours. We are going to a hypnotist next month. What do you think? I will take your advice and get him to take Gingo and supplements. What do you think he has? Is it Lab. Yours sincerely Maria |
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I'm in REALLY bad shape right now! FYI Called the pharmasit today re: Ginko Biloba, he told me it's a mild stimulant and it could intensify the anxiety. His words: "it'll speed you up." Anybody? |
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BRUNO. I have heard Gingko can help with depression - but it "speeds" things up in that because it gets the blood flowing well, it can make you more energised. NOT sure if it would worsen anxiety - you could always try? Be careful though if you are on any other meds - nt sure if u can mix it with others. MARIA - doesnt sound like Labs as Lab does not consist of attacks. Could be Menieres or MAV (migraine variant). Check out my site at top of this page "external links" - read through and see if anything seems familiar. xxx |
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Bruno, I found that the depression set in for me around 4 months too. The total helplessness you feel is overwhelming. The need to be proactive with VL will help. I'd suggest getting yourself onto a regiment of good multi-vitamins, B-complex for energy, calcium and ginko. The believe this will help to build your immune system and help your body to fight this virus. I noticed a major change for the better at about 5 months. I think you'll start having more good days soon. The weather has been terrible. Many of our ups & downs are controlled by the weather. There has been more rain and barometric changes since last summer than in many years. Try and find some way to be proactive with this virus and it'll will help with this depression. Since we can only treat the symtoms of this disease, I would be very causious fo going on to a anti-depressant. There are alot of side effects with them. |
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Bruno -- Hang in there. I think that Robin's advice was very good. I have been taking Ginko (60 mg/twice a day) for about a month and a half. I have NOT experienced any kind of "caffeine-like" effect -- such as becoming extra-agitated, hyper or increased anxiety. I also don't think that it has made any of my symptoms worse -- on the contrary, I just had a week and a half with much less brain fog and dizziness. I have no way of knowing if the Ginko is responsible for my better days but I'm certainly going to keep taking it. The vitamin routine (complex B and extra vitamin C) has helped as well. Emma also made a good point -- check with your doctor before you start combining supplements and any other medications that you may be on to make sure that they can be taken at the same time. Also, if you are having a very bad time right now, especially with the emotional issues that come with this illness, please call a good friend, family member or a health professional -- someone that can provide you with some support -- that helps me at least a little when I am going through an especially bad time with labs. Hang tough! Mary |
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I have now got a pain down my left and around my ribs, did anybody else have this. reguards Stuart |
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Hi all: I have two questions -- does anyone know if reducing the intake of salt and sugar makes a difference with all types of inner disorders or is it only with Meniere's? I have eliminated caffeine (including chocolate) and alcohol but am wondering about salt and sugar. I'm most interested in sugar effects b/c I consume much more of it than salt. Also, has anyone heard of a patch that you can wear on your ear? Is this something to ask a doctor about or does it interfere with the compensation process? I'm back in a brain fog with my body swaying every which way but am determined to figure out every possible way to get over this ridiculous illness. Remember, everyone, that we are very strong people for dealing with these symptoms every day for months on end. Mary |
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Hi Everyone, Mary, my ENT gave it to me. Is is acually for travelers for air sickness. It's called Transderm Scop by Novartis in the US. The Doctor told me to cut it in have and it would help with the dizzies. I'm not sure it works, but my GP said it wouldn't hurt. I had a really good week last week and a so-so week this week. We have had rain and snow here in New Jersey this past week. today is sunny and I'm feeling good again. I keep having to remind myself that just because I have a few good days, this virus is not gone, no matter how much I want it to be. But I am much better than I was. Anna, I do have the sour taste in my mouth and the tingling on my tongue usually just before an attact, does that mean something specific? |
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Mary - any inner ear prob CAN be affected by salt/sugar/caffeine intake. Its to do with GI index and also inner ear fluid. But I have found such food has no effect on my dizziness. xx |
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Thanks Robin and Emma -- I'm going to call the ENT I saw back in October about that patch. I'm going to pay more attention to the weather patterns, too. Mary |
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My dizziness has got better but I am left with a really funny feeling in my head- like I have been hit in the back of the head with a large object. My head feels as if it is going to fall off. Is this normal if the light-headedness is not so bad? I am thinking about going to a ENT specialist- private as I am sick of my GP. Thanks |
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Hello, everyone I have not been on this site for awhile. The previous week was very tough on me and my family members both physically and emotionally, because my mother-in-law passed away. Surprisingly, despite my condition (14 months since being hit by the fifths bout of labs/BPPV/perilymph fistula, or whatever it is) I could handle the situation (all the preparations funerals, people coming, talking) quite well. Of course, I was fatigued, had some headaches (not as awful as before), nauseous sometimes, noise intolerant (I always use earphones). But definitely I was much closer to my old self, than, say, three months ago! I could feel it! And my balance is much-much better! Robin, - I also have this sour taste and tingling on the left side of the tongue, especially before being badly imbalanced. Look at the anatomy of the ear. One of the cranial nerves, exactly VII cranial nerve, runs from the space right under the oval widow (membrane, that separates the fluid filled inner ear from the air filled middle ear) down to the side of the tongue. If a person has a tear in the oval window (perilymph fistula), perilymph fluid leaks down from the inner ear down to the middle ear and irritates the VII cranial nerve. That gives this sour taste and the tingling or pressure on the tongue, on the cheek, even on the jaw and on the teeth. Look yourself at the information about the VII cranial nerve, and what sensations it is responsible for: http://info.med.yale.edu/caim/cnerves/cn7/cn7_1.html You can ask me, why I insist so much, that all of us knew exactly, what kind of inner ear disorder, or disorders, we have. Because, if we knew, that we had a perilymph fistula, for example, we could avoid certain things, that would make us feel worse, sometimes much worse! Also, all of these things can make the tear (fistula) bigger and prevent it from a proper healing. I already presented you with the list of these activities (from an article of Dr. T. Hain), and Mary, for example, admitted, that those things certainly make her worse. These things certainly make me worse. “Avoid the following activities if you have a perilymph fistula: Lifting • Straining • Bending over • Popping the ears • Forceful nose blowing • Air pressure changes such as due to air travel • High speed elevators • Scuba diving • Loud noises (such as your own singing or a musical instrument)” I am continuing to look for the information on PLF. Probably, none of the doctors would tell you, what kind of an inner disorder, or disorders you personally have. At least, I do not think they would apply too much thinking about your problem. Think about it yourself, search for all the information available, analyze your symptoms, listen to your body, do not do stupid things. (Sorry for a terribly long message!) Just a wrap-up sentence in the end: I completely agree with the following Mary’s notion: “Remember, everyone, that we are very strong people for dealing with these symptoms every day for months on end.” Anna |
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Hey I'm about 95% percent normal now...I've never really been 100% in my life anyway :). Just wondering if everyone can post their age? I have a feeling I'm one of the younger sufferers, and just wanted to see if more people are suffering longer when they're older. It seems I had a speedy recovery opposed to most of the others here. BTW, I had some pain on my right side, just on the rib cage. As if it was bruise, so it was tender to the touch, or when I stretched it. However, it looked totally normal. Henry |
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Am 25 - have had uncompensated labyrinthitis for 2 years. xx |
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I am 53. The first bout of labs/BPPV hit me when I was 19 after viral A - type hepatitis. It lasted for 6 months. The second happened only twenty years later at 39 years old after viral B type hepatitis this time. I am so “lucky” with viruses! The second bout lasted also 6 or 7 months. The third bout was at 43 years old, it started “with no particular reason” and lasted for about a year. The fourth one happened at age 46, again “with no particular reason”, and lasted about 6 or 7 months. Now I am 53, and recovering from the 5 bout of labs/BPPV/perilymph fistula, which started 14 months ago after a long flight from. I am still only about 70 % of my normal, very active and outgoing old self. Do you see any pattern? I do not. Except, that it is not getting better for me with time. Anna
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Hi I am 51 ish and deep in the throws of perimenopause. I am often confused by my symtoms, are they VL or menopausal. Does labs cause night sweats? I have had VL for six months now and I think I'm seeing a light at the end of the tunnel. However, I am still affected by weather changes, but no longer forced back to bed. The dizzies are fairly mild and 1/2 of valium will usually get me straight. This is my first and only bout (I hope) with this desease. |
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Robin - the anxiety from labyrinthitis/VL will indeed cause night sweats - and remember anxiety can be a weird thing and can manifest itself in odd ways. The shock of awaking to dizziness in the night can send your body into overdrive. xx |
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Completely agree with Emma. I had night sweats during my worst attacks of labs even when I was 19. Night sweats stopped when I became dizzy-free. Henry, Bruno, Emily, Mary, Nikki, Stuart,Michele, Rich (both) and everybody - how old are you? No rules and patterns for this illness. Anna |
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I'm thirty now, and was twenty eight when I had labyrinthitis. |
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I'm 39 -- first came down with this in late July of 2004 (almost six months ago) -- although I had anywhere from 2-4 "vertigo" episodes throughout a 6 - 12 month period before this started in July. During these episodes, I would wake up in the morning, try to get up/move a certain way, and have intense vertigo spins. After a short while, the spinning would stop, I would feel a little naueseous but go on with my day. Each time, I thought it was just a symptom of a flu bug. Everything would last a few days or so (spinning just in the morning when I got up). I never called or went to the doctor for any of these episodes. None of the doctors had anything helpful to say in re to connecting those prior incidents with what I came down with in August. Anna -- I completely agree with you that we need to be proactive in researching exactly what type of inner ear condition we may have. I am going to head back to my ENT next week to see if he can be of any more help. If not, I am going to do some research and find the best ENT in my area. I'm going to my internist tomorrow b/c I want to be certain that everything non ear-related has been ruled out. The internist I saw in September/October ran some blood tests but I want to make sure he was totally thorough. Anna -- I'm so sorry to hear of your family's loss -- stay strong! Mary |
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I'm 38 1/2 (lol). I had my first ever attack of BPPV in May 2004 which resolved completely in a few days. I went on in a completely normal fashion, expecting it was a one-off, until August 2004 when I got my bout of whatever-it-is/was (BPPV/Lab/Anxiety). I would say (cautiously) that I am recovered, but I feel a bit weird and dizzy if I am tired or off-colour. The anxiety is still with me - to a lesser degree - in that I am a bit afraid to go to sleep at night in case the spins come back, or to roll over onto my 'bad' side. I also have that jolt of fear if feel a bit dizzy, even when its a perfectly natural cause e.g. an uneven floor, or a smudge on my glasses; because I become afraid it has returned. I have to talk myself around. But I was/am always been a bit of a worrier and inclined to get a bit anxious over things. Up until I got the bout of whatever-it-is/was in August I was something of a party girl. I would be healthy and go to the gym during the week, but on weekends, I would go out with friends and drink lots and lots and smoke. I dont do that now although I can now have a couple of drinks without too much trouble. I get tired pretty early in the night, but that could be becasue I'm not used to it. I also dont want to do anything that might bring it on again, or mimic the symptoms i.e. a hangover, fatigue. Much to my friends' disgust! So on the bright side its been good for my overall health in some ways! |
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Anna. My condolences. |
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Hello All, Does anyone else get chills before a lab attack? I know for a fact that my heart rate drops during an attack, which will, I think drop my blood pressure. Does anyone else experience this? Menopause or Labs? Anna, I'm sorry for your loss. |
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Not sure what you mean by attacks Robin? Lab doesnt normally consist of these. xxx |
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Hi, everybody, Robin - as well as Emma, I do not quite understand what the word "attack" means. Chills may be one of the signs of anxiety, as well as night (or any time) sweating. Usually, my heart races like crazy (Is it contrary to what you have? You said: "my heart rate drops during an attack"). Anna |
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Hi all, felt I had to write in again to show you thta there is light at the end of the tunnel. I wouldn't say I am cured myself but I am definately on the way. I first got Labs while on a shopping trip at the beginning of Nov 2004.From that day I got worse and worse with nausea, dizziness, weakness, a fainting feeling and could not even leave the house. After countless visits to 2 extremely unhelpful doctors ( one of whom told me 'some of us cope with flu better than others') I was admitted to hospital for 10 days where I was tested for everything under the sun, showing nothing. I was then sent home with no diagnosis. It took a locum doctor to tell me sbout Labs and I couldnt believe no one had mentioned it to me. After not leaving the house whatsoever apart from to be dropped off outside the door of my doctors I started setting myself realistic targets, like just nipping across to the local shop. I told myself it didnt matter if I went inside as long as I got there that was all that mattered. I did this every day in small small steps. I also took betahistine for dizziness and gingko - go right out and buy this please it works wonders. I cannot stress this enough. Eventually my strength began to build up slowly but surely. I am still nowhere near the person I was buy that to be expected. I realise that compared to some of the people on this site I have got off lightly suffering only for this amount of time. The good news is that I was able to return to work a couple of weeks ago and am doing OK. Nikki and Henry - identified with what the two of you were saying. Our experiences with this dreadful virus sound extremely similar. Nikki, I, like you feel I dont want to go into crowds or too far away from home now, but I'm not sure how much of that is still the symptoms and how much I'm imagining as that is haw my problems began ( while out shopping). Either way, for now I am happy with what I have acheived and feel content. I just wanted you all to know that you do come out the other side and when I read this site 2 months ago for the first time that was something I was unprepared to believe. Be strong and the most important thing is to think positive and set yourself small and realistic targets. The one thing I would like anyone to answer for me is what exactly you mean by 'brain fog' ?. Also does anyone find that if they are walking along feeling fine and start panicking about what would happen if you suddenly had a dizzy spell, the symptoms seem to come on sometimes? Or have I gone mad aswell? Be interested to hear anyones views on what I have said Thanks |
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I'm 29. Got my first bout of lab 4 years ago.... It's weird, about 50% of the people I told about my sickness all knew at least one person who's had it before...they all said the room was just spinning, and they were just crawling to the washroom...musta been about 10-12 people. Even my mother gets it. I guess people don't really know what they have, and you know what? It could be a good thing. I'm so worried about getting it now (I dunno if it's stress related) but I'm always stressed out due to work and school. I carry around 5 types of meds, from Gravol, Bonine, Tylenol, Advil, etc wherever I go. But I do whatever I want, I don't let this sickness hinder what I do. Just try to live your life as normal as possible, or else it'll just get you super depressed...which isn't good. BTW, I tried to quit coffee, tea and alcohol for the last 2 weeks while taking Ginko...I couldn't last! I'm back to coffee and tea everyday, stopped the Gingko, and had a beer 3 hours ago! :) ...and I feel great! We need to setup an all-encompassing lab website...forget what doctors say, it's the patients that know everything. I've learnt more about lab on this site, than on all the others compbined. Maybe I'll set something up, I'm a web developer in my spare time....I'll call it www.IHATELAB.com |
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Kay. YES!! If I think about dizziness I feel dizzy. Sometimes reading the posts on this wall make me feel dizzy. In fact, today I was at work and considering going to a nearby food hall for lunch (something out of the questiona couple of months ago). I started to think about what would happen if I got a dizzy attack in the food hall - and lo and behold I started to feel unwell and panicky. And I havent had a dizzy attack for ages. It makes me inclined to a believe to a point that a lot of my problem was psychosomatic. The fear hangover is something that will take a long time to get over. I worry about getting BPPV/lab any time soon because because I know I would become a nervous wreck. I feel like I need to feel safe and well again before I could cope mentally with another dose. Life wont ever really be the same again. I will always feel a bit unsafe. Or think twice about going somewhere, or jumping on a plane, or swimming in the ocean, or any number of things. I would get what I considered an "attack" in that I would feel hot-cold and flushed in my face and feel a weird sensation rising up through my chest and shoulders to my head. My scalp would feel like my hair was on end. I would then start to feel very dizzy and very frightened. The neurologist said it was probably panic attacks. I think it could be a combination of things, but its still extremely upleasant. "Brain fog' as I understand it means that you just cant think straight. Words escape you, you stare into space a lot. I even became a bit dyslexic and started forgetting how to spell words and getting letters and digits out of order. I still sometimes have days when I feel a bit out of it and off balance. Some particular places at work make me feel worse (a toilet for one!). I seem to be a lot clumsier although my balance is supposedly fine (always was clumsy anyway). Some days I feel more anxious than others for no particular reason. Some days I feel pretty much normal. Henry, are you saying you still have symptoms after 4 years or that you have recently got another bout? I agree that this site has been invaluable in sharing and finding information about inner ear disfunction. To be honest, I find it's been a blessing and a curse. Great for information, but some people's stories have scared the pants off me, and I suspect may have contributed to some of the anxiety I felt. I too still carry around medication, and sea bands. I have also met a lot of people who have either had it or know someone who has. It seems remarkably common, but also remarkably misunderstood by doctors. Its kind of hard to explain what youre going thru to someone who hasnt experienced it. I really wish it was like the measles so that once you had it you were immune to further attacks. Take care |
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Hi everyone: Robin -- what did you mean by an attack? Just curious. In the beginning, I had a few very bad vertigo episodes, including one when I was out by myself in public with my two kids, everything was spinning incredibly fast, I was sick to my stomach, could not move for the first minute or so, then could barely walk, basically felt like I was going to lose consciousness or die. But that was all within the first week or so. Now, I don't have these horrible vertigo episodes, but I have brain fog, very severe at times, and a host of other symptoms. Brain fog to me is a feeling of complete spaciness. Sometimes it is very severe -- it is like my brain shuts off -- I am completely lightheaded -- I feel like I am going to pass out any second. I also get that wierd sensation that Nikki described with a strange sensation passing throughout my body -- usually from my chest area upwards. Thank God that someone else has felt this. AT these times, I have to stop whatever I am doing and go lie down if possible. I cannot continue talking to someone, etc. I also jumble words when I'm foggy-headed and do stupid things. I must say that it is the worst symptom for me. I have read on this site and the dizzy lounge that these symptoms can be caused by the overstimulation of the vestibular system. I hope everyone is right b/c it is very very scary. I also have anxiety about being out by myself and passing out or having another bad vertigo episode. I'm trying to toughen up and remind myself that I haven't ever actually passed out. My doctor's appt. was cancelled this week -- there is a horrible stomach flu going around here and my doctor came down with it. My whole family got it (including me!) but I'm happy to say that my symptoms did not worsen from it -- maybe it's just colds, etc. that worsen our symptoms. I will pass along any new info I learn from my doctor visits. Hang in there everyone. Mary |
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I find that when you have Labs for a LONG time (2 years for me) you no longer get scared by any posts, it's only when I first got it and didnt really know what it was etc that I got scared. I would like to think my site was a website encompassing labs but I laughed at henry's ihatelabs idea!! I realised, when setting mine up, the huge need for it as there are no other "only lab" websites. Oh and if youve had lab, yes stress can bring it back as can illness. Does NOT mean its psychosomatic - you always have the damage in the inner ear - when it comes back - its "decompensation" - the brain simply forgets what it learned the first time round to get rid of the dizziness. xxx |
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Hi all. Firstly once you have lab you can get it back via decompensation - whereby the brain forgets what it has learnt when it got rid of the dizziness the first time round. It is not Labs "coming back" in the viral sense. Stress can cause decompensation as can illness. As for looking at things on the net - I found that at the start of this I sometimes got panicked but now, after having it 2 years, I dont get panicked at all as I know what ive got and i know eventually it'll go but theres no way of telling when. I would like to think my site was a site encompassing labs but I did laugh at henry's comment about ihatelabs.com! I realised, when setting mine up, that there was no site on the web particularly a UK based site which was purely about labs. Wishing all a minimal dizzy weekend. xxx |
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Mary, yes I forgot to mention that I had an attack at work in the very beginning when I felt very dizzy and thought I was going to pass out or die too. My boss took me to hospital and we sat in the waiitng room for over an hour without being seen until I felt better and got a cab home. I had further feelings like I was going to pass out but they diminished in intensity over time. Having two children relying on you to get them home must have caused you untold stress. My symptoms sound so similar to everyone here, so why would my neurologist, who supposedly specialises in vestibular disorders diagnose BPPV/anxiety? Was it purely based on my description of bed spins, or are they very alike in the way they manifest symptoms? |
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Mary, yes I forgot to mention that I had an attack at work in the very beginning when I felt very dizzy and thought I was going to pass out or die too. My boss took me to hospital and we sat in the waiitng room for over an hour without being seen until I felt better and got a cab home. I had further feelings like I was going to pass out but they diminished in intensity over time. Having two children relying on you to get them home must have caused you untold stress. My symptoms sound so similar to everyone here, so why would my neurologist, who supposedly specialises in vestibular disorders diagnose BPPV/anxiety? Was it purely based on my description of bed spins, or are they very alike in the way they manifest symptoms? |
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Hi, guys At the worst of my labs bouts I feel exactly like Nikki describes it (and Mary had it as well): I would feel hot-cold and flushed in my face and feel a weird sensation rising up through my chest and shoulders to my head. I think it could be a combination of the inner ear illness and anxiety, and it was extremely scary, especially when it happened to me for the first time. Robin – I am sure, that our hot flashes, or chills, night sweats, heart racing, or other similar sensations is a combination of the inner ear illness and anxiety (inner ear disorder is the real cause of the anxiety, and panicking just increases dizziness and other unpleasant symptoms even further!). It is not menopausal problems. I had these sensations during my bouts at age 20, then at 39, then at 43, then at 46, and finally at 53. For me, there was no “menopausal” – like symptoms in between the bouts! Isn’t it convincing? What a strange illness… Emma said: “I find that when you have Labs for a LONG time (2 years for me) you no longer get scared by any posts”. I have had RECURRENT, sometimes very LONG and DISABLING bouts of labs for more, than 30 years: so, you can imagine, that I am not scared to read anything about this condition or any other inner ear disorder. I do not consider myself as a severely ill person. Between the bouts, I am absolutely normal, active, outgoing, both career and family oriented, having a lot of friends back in Russia, and in the USA. Between the bouts, I like to have a good dinner with good wine with my friends, or family. Between the bouts, I travel all over the world taking part at scientific conferences and vacationing. I stressed it several times: “BETWEEN THE BOUTS’”, because during the worst time of my labs/BPPV/fistula (or whatever it is) bouts I am a total wreck physically and emotionally. As time goes on during every long recovery from a current bout of this dreadful disease, I feel more and more confident, and I feel less and less fear of walking, riding, driving, going shopping, being around people, working, going to the gym for aerobics. Time heals! (not doctors!) Everybody, FORCE (!) yourself to stay strong, be patient, and keep hope. Not an easy task, but you can do that! Love you all, Anna
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Hello All, Ihatelabs really. Recently, I have been getting night sweats. I wake up several times to throw off the covers than get chills and cover myself again. This is new. I thought I was pretty much recovering. I think of the dizzies as attacks because, my lips and tongue start to tingle, sometimes it extends to my arms too and then dizzies come on. It seems to be worse now when I'm lying down. BVVP seems to describle how I'm feeling. I seem to do better when I'm up and moving around. My labs were 24/7 for the first few weeks, then, they became, less 7 less frequent. The hot flashes or sweats happen mostly at night, but less frequently during the day, this is pretty new. I am going into month 7 of this. Just when I start feeling better, I seem to take two steps backwards, again. It is very cold in New Jersey right now and we have about a foot of snow on the ground. I had a very busy week and I may have over done it a bit. but still......I just don't know. |
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Posted by on January 29, 2005 02:32 PM I also find that (when I started to feel better) walking around and doing things made me feel better than sitting down. Sitting and reading, or watching tv - especially if the camera was panning - would make me feel like I was moving. Leaning over to eat a meal (we dont have a dining table so we eat from a coffee table) would also make me feel worse. Still does to an extent. I can go to the gym and do a workout but when reading sometimes, things seem to move around in my peripheral vision or I have the sensation or movement, especially if I'm tired. I love to read so its quite annoying. My sleep is much better now but used to be very fitful and filled with weird dreams. Cant remember if I sweated a lot or not, but I tossed and turned a lot. |
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Hi Everyone, I'm back here again. I can't believe it, 3 months free, and now I am back here again. As I write this, I am crying because I can't believe that I could conquer it once, just to be disabled again. I can't stop thinking what will happen if I loose my job. Surely an employer can only put up with so much. 6 weeks last year. The doctor has just signed me off again, I can't even go into a shop, let alone work. The doctor has prescribed me Betahistine, and I am praying that it will work. My son had to take me to the shop today like an old lady, hanging on to his arm. This is not fair. How come nobody including the medical proffesion knows how disabling this illness is. Someone said to me the other day that I was lucky, at least it wasn't life threatening. Maybe so, but it is threatening my quality of life, I can't do anything, not evan walk down the street. All I can do is pray that it goes away again quickly. Kate |
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Kate - your comment about 'life threatening' reminded me of something I wrote on my site (labyrinthitis.org.uk) in my story as I too got the same comment. Noone has any idea about labyrinthitis. This bout WILL go just stay active and positive and dont let the head monster get to you too much - I know its hard. Do some VRT (exercises) - IT WILL GO like it did last time. xx |
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Kate - Emma is right, that this current bout can be much shorter for you this time. I read it many times from support groups on the Internet, that people with recurrent labs have a tendency for less severe and much shorter bouts as time goes. IT WILL GO AWAY like it did last time. Anna |
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Hi to all, my husband has been dealing with VL since July, 2002. After many doctors misdiagnosis' (MS, menningitis, lupus, etc.) he was finally diagnosed by a brilliant otoneurologist, who specializes in the inner ear. He is treating this horrible disease with a cortocosteroid injected directly into the inner ear with remarkable results. After so many dreadful experiences with doctors and their lack of care I was skeptical but sitting in the waiting room with many typical sufferers with amazing stories of how they were treated and are 90 to 100% better, I am hopeful. My husband is in the process of the numerous tests and should begin treatment within a few weeks. I feel this is the answer. The doctor treats people from all over the world. I was surprised to see how far away people come just to see him. I will keep you posted of the outcome. I do with to say how sorry I am if you are the one who suffers from this ugly ugly horrible virus, but keep in mind it is also as hard if not harder for your loved ones watching you go through it. It simply breaks my heart. Good luck to you all. Carol |
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Hi, everybody, Carol, it is a very interesting information about this brilliant otoneurologist, who specializes in the inner ear and who is treating your husband. If you can, please, provide us with this doctor's name and the location of his clinic. Does he have a site on the INTERnet? Thank you very much for sharing the information with us. In any case, please, keep us updated on the results of your husband's treatment. Anna
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Hi all, I'm probably 95% recovered from labs and just have a question regarding the brain compensating for the imbalance. I know that in recovery the brain eventually learns to compensate for the imbalance caused by the virus. Will this always be the case that the brain is compensating or does your balance ever get back to normal after having this virus? I got the dreaded labs back in Nov 2004. I'm glad to report that I'm now back at work and I'm even able to go out with friends etc to pubs, even clubs and I feel pretty much back to normal. Still get the occasional light headidness but this only last a second and then I feel ok again. No more vertigo spells thank god. I also suffered from panic attacks and anxiety and I'm not sure when the labs actually stopped and my anxiety started. Its a lot better now. I feel totally comfortable out and about in crowds. Doc put me on beta blockers to help calm me down as my heart was beating so hard. Still feel a bit on edge but this too is slowly starting to get better. Anyway I thought that you might appreciate hearing from someone who has had labs and has pretty much recovered from it. Its been really hard but now I'm out the other side. If you're still suffering, hang in there it will get better. Get well soon all. Hugh |
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Hi hugh - great that youve alomost recovered - loks like you were def a lucky one as you havent had it v long. Doesnt make it much easier though does it?! In answer to your ques - once the brain compensates it is effectively "back to normal" in that it isnt compensating anymore - well I guess it is but it is automatic. They say, that with many (altho only having it 2 mths you may be lucky) the inner ear damage is permanent so decompensation can occur but only in some cases -so do not live in fear. You will be fine. xxx |
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Hi everyone, Thanks for keeping me sane ....again. I managed to get to the shops today hooray! However, I am well aware that there are good days and bad days on the road to recovery, yesterday was the pitts. Does anyone know if it is O.K. to keep taking my Ginko at the same time as the Betahistine? From what I gather, they work in the same way by increasing the blood flow to the inner ear, is it safe to take two things that act in similar ways? I am trying to deal with the accompanying anxiety that goes with this as well, we all seem to get that. I can identify with a previous posting, that talks of being uable to cope with crowds, or talking to people for more than a couple of minutes, which is impossible when I have to stand up in front of my students and give a tutorial. I find that being honest with people and explaining that you have labs, and a little bit about how you feel does help. Most people are sympathetic and it does help to decrease the anxiety of' oh my god, what happens if I fall over whilst I'm talking to this person'. Word of warning about the shower, I have nearly injured myself several times whilst closing my eyes to rinse shampoo off my hair, as I tend to loose my balance! Now I have bought one of those plastic'step stools', and sit down on it in the shower to rinse my hair. How sad is that!! Evan worse, my son has banned me from doing my favourite walk down by the river, as he has seen me when I'm really dizzy and is worried that one day I might fall in! However, I did find that gentle excersize and fresh air accompanied with pleny of rest did help last time, but do wear a wooley hat as cold ears .........woops! Well, thanks again, lets hope this bought passes quickly, it was really heartening to read that recurrences don't last as long. Thankyou everyone, Kate |
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Hi everybody, Kate – I read your last post. I was just once again amazed how this disease repeats its symptoms in all of us! I only wonder – why doctors never tell you about the possible symptoms of labyrinthitis, or other inner ear disorders? At least, they could have a special leaflet in their offices, if they do not want to repeat it all to their patients! It completely ruins our trust in their knowledge and their ability to help us. I never close my eyes in the shower: it makes me dizzy. Even running water sounds like a Niagara Falls – this can make me unstable as well. At the worst time of my disease I could not take a shower at all – I took a bath, sometimes with the help of my husband. Now, I am not afraid to be in the shower alone any more, although I always move slowly and gently. Kate also said, that she likes to wear a wooly hat to cover her ears. I found it very comfortable to have a tight band around my ears. I feel more stable wearing something on my head : the tighter – the better. Ginko at the same time as the Betahistine? I can not say much about Betahistine – I never tried it. Like many people on this site, I took Ginkgo for several months – it did not hurt. But I really cannot say if it was Ginkgo that started helping or just time. I am still not quite well. But on my way to recovery, no doubts. Stay positive! Anna |
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Hello Fellow Labbies, I am now on month 7 and I am having many more good days. Barometer changes still affect me, but, I'm back at the gym and feel back to my old self again most of the time. I am still taking mega vitamins, B-complex and ginko. I believe I have segued into menopausal hot flashes and night sweats. I am 51 and least this is normal. No cure, but normmal. I believe I am back 95%. Here's something funny. Many of the Menopause symtoms are not that different from Labs. 1. Hot flashes, flushes, night sweats and/or cold flashes, clammy feeling MORE INFO 2. Bouts of rapid heart beat 5. Trouble sleeping through the night (with or without night sweats) 7. Loss of libido (?) who wants sex when you're dizzy? (I have been married for over 15 years) 9. Crashing fatigue MORE INFO 10. Anxiety, feeling ill at ease 11. Feelings of dread, apprehension, doom 12. Difficulty concentrating, disorientation, mental confusion 13. Disturbing memory lapses 16. Aching, sore joints, muscles and tendons 17. Increased tension in muscles 19. Headache change: increase or decrease MORE INFO MIGRAINES/MAGNESIUM 22. Depression 23. Exacerbation of existing conditions 24. Increase in allergies 27. Dizziness, light-headedness, episodes of loss of balance 29. Electric shock sensation under the skin and in the head 30. Tingling in the extremities, 35. Tinnitus: ringing in ears, bells, 'whooshing' buzzing etc |
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Hi, everyone, Robin - where did you get the list of menopausal symptoms that you presented in the latest message? You chose only the items, which coinside with labs symptoms, right? Robin, could you please, E-mail me the whole list of menop. symptoms? Thanks. Everybody - just an update on my condition. I am on the 15th months of my inner ear disorder fifths bout (bilateral labs/bilateral BPPV/left ear perilymph fistula). I am feeling better and better. I am still not ready to go to the gym to my favorite step-bench/aerobics sessions. Too much for me yet. I go shopping slowly, drive short distances. But I definitely have more, and more energy. I work 8 hours a day as an engineer and researcher, and I am more productive lately. I still work and drive in Bose noise-cancelling earphones, because loud and low-tone rythmic noises make me dizzy and unstable. I hope to improve even further. How you are all doing? Anna
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Hi all, Well I'm into my second week of my recurrence of labs. It amazes me how easy it is to forget this hell when you're not in it! Rather than getting better this week as I expected to, it has got somewhat worse. The Betahistine is evidently not working and I am taking a Ginko at night. I keep waking up in the night in a panic feeling as though I am falling down an abyss!I keep going temporarily deaf in my right ear. I am trying to work, and each thing I manage, I am giving myself a massive pat on the back and lots of positive affirmation, I am back to reciting the mantra 'compensating,compensating', every time I get dizzy. It doesn't help with the dizzyness, but it seems to help the accompanying anxiety. Small rooms like toilets are hell however, as is the supermarket. I have decided to do my shopping online for the duration,then that is one less thing I have to worry about. Strangley, my symptoms seem to be in the same pattern as last time. I am O.K. when I get up, and then around 12.00 they come on big time, and abate later on in the evening. I remember from last time that this period gradually 'closed', with my lunch time symptoms going last of all. I'm sure I asked the question last time, but has anyone else experienced this? I am trying not to get too depressed, and am also trying to do as much as I possibly can to keep my brain compensating. I have decided to go back to the doctor next week, but this time I am going to print off these pages, and the lab pages from the U.K. site, so I am armed with plenty of amo. If anybody objects to me doing this, please let me know a.s.a.p. I don't want to upset anyone. Best wishes to all my fellow dizzys, Kate |
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Hi Kate, I always felt worse around lunch time when my labs was really bad. Thankfully I'm a lot better now although not completely symptom free. Even now I still feel light headed around lunch time. Actually looking back all my really bad dizzy spells happended around lunch time and never in the afternoon or evening. Would love an explanation if anyone has one? Hugh |
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Hi, I know that this is a really late post, but tonight I had a really old friend visit me, he is a recovering alchoholic who has been dry for many years, and now councils people in drug rehab. He handed me a really scruffy peice of paper that he carries everywhere with him and thought it might give me some strength. I hope this helps you all too. It starts 'Just for Today', 'Just for today, I will try to live through this day only, and not tackle the whole problem at once.I can do something for 12 hours that would appaul me If I felt I had to keep it up for a lifetime.' It goes on.... 'Just for today I will be unafraid, Especially I will not be afraid to enjoy what is beautifull, and to believe that as I give to the world,so the world will give to me.' I know it is difficult to see how this might apply to us, but it does, this horrid thing lasts so long,and feels never ending, but take it one day at a time, and hopefully the light at the end of the tunnel will be sooner than we think.......here's hoping! Best wishes to you all, Kate |
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Hi Everyone, Just thought I would send in an update to my run in with the dreaded labs. I gave up on my doc, although he is nice enough, I just dont think they know what to do and they sure dont tell you enough. I am working full time since 1/3, but I am so tired some days that I just want to climb into bed when I get home. I think the fatigue is the worst part. I still feel kind of off balance at times, and since I work as a nurse in a cancer clinic, I am up and down, turning quickly, and generally working hard all day. This probably is not helping me heal as quickly as if I could just take it a little easier. I am into my 9th week of this. I only hope it goes away soon. I drive ok, but dont feel comfortable taking a long trip. I just drive the 15 min. to work and back. I am taking Ginko and B complex. Seems that B6 is good for healing nerves. I think it has helped. I do have brief memory blanks, but just for a minute or so. I take naps on the weekend to try to get the rest I need. Thanks for all of the good notes here. It is great to share. Good luck to us all, Linda |
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Hugh, I had a similar thing happen. I would wake up feeling "ok" and then by mid to late morning would hit a slump and feel pretty bad for a couple of hours which would then improve. I would feel bad just before bedtime but thats because the tiredness always made it worse I think. |
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Aaaaargh, it's back!! I don't believe it, a year after it started. Last bad attack was September now I'm getting nightmare headaches and it feels like there is a lead weight at the back of my head that keeps throbbing and twitching. Have dreadful cramps in my legs and feel so so tired. Just feel so depressed and tearful all the time and can't seem to tolerate anything or anybody!!! Sorry to be so negative but this seems to be the only place I can let go |
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Further comments should be posted to the third page. |
Good going Rich! Thanks for providing this space for Lab sufferers.
I'm not sure I fit into that catergory now tho. I went to the Neurologist last Tuesday who put some eyeball-measuring goggles on me and pushed and pulled me around, and made me do some balance exercises. His diagnosis was that I HAD BPPV and have gotten over it and the residual dizziness is because of anxiety brought on by the BPPV. He wrote me a referral to a psychologist and is sending me for an MRI scan in a couple of weeks as a precaution. I didnt quite know what to think of this. Embarrassed mostly. He seemed very ppositive about the whole thing. I have tried to adjust my attitude, started doing relaxation tapes and tried not to be so worried of what might happen as it's only BPPV. He said if it happened again to go see him and he would show me some manouver to fix it. Well just this morning after I had just woken up, I turned my head quickly and the room spun. Only for a few secs, but definitely spun. I tried to provoke it again a few times but bothing happened. Now if I ring him (less than a week after I have seen him), is he going to tell me I imagined it?