Sharp Blue: Labyrinthitis; or The Missing Week

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I’m just returning from a state which I’d very much like to never again visit. Last Wednesday evening I started feeling dizzy. The next two days, this dizziness became so bad that I couldn’t get out of bed for more than a few minutes at a time. I have no other symptoms whatsoever - no fever, no aches, no stiffness, no pain - I just couldn’t balance well enough to stand up. On Saturday morning, this seemed to clear up a bit but by lunchtime I was forced to return to bed. Late in the afternoon, it suddenly became much, much worse.

My family had gone to visit my grandad, thinking that I was well along the road to recovery. When they returned a few hours later, they found me laying in bed feeling incredibly nauseous. Even when laying still I felt seasick. Soon after they got back, it became too much for me and I started to vomit uncontrollably. At this point, my mother decided that I had to see a doctor as soon as possible, and it couldn’t wait. Somehow I managed to struggle into clothes. I have no idea how. Then, by one of the hardest acts of will of my life, I forced my way to the top of the stairs before collapsing to the ground and vomiting into the bowl I’d been carrying. After five minutes to regain my resolve, I made it to the bottom of the stairs, where I curled up hoping to never have to move again. There was no way I’d make it to my sister’s car, and the journey to the doctor’s surgery was a nightmare I just couldn’t face. Strangely, I was still perfectly lucid and calm amid the overwhelming vertigo. I just couldn’t force myself to move.

Eventually, my mum convinced the doctor that I was very seriously ill and that I couldn’t get to the surgery, and a doctor was dispatched to treat me. I think that everyone feared meningitis. She soon found, however, that I had a normal temperature and a normal bloodpressure and diagnosed me with acute viral labyrinthitis, an infection of the inner ear that affects balance. After other medication failed to help, she gave me a shot of cyclizine and that was enough to get me back to my bed. And that is where I have remained from then to now. The prescription of Stemetil helped, but even with that I wasn’t able to do more than occasionally sit up in bed. The worst symptoms of labyrinthitis usually last for seven to ten days, and today it’s finally starting to really fade away so I can become productive again. It’s not an experience I ever want to repeat. Now I just have to start making up for lost time.


Hey Rich That sounds pretty unpleasant. I'm glad you're well again. M


At least your illness had a name reminiscent of a great movie featuring David Bowie. Be thankful for *that*. (by this I simply mean: stay well *hugs*)


Hey Rich, I know the horrible consequences of labrynthitis. Last summer, I woke up completely deaf in my right ear. I was quite worried, but thought that maybe it was a cold. I began to feel somewhat dizzy but continued on with my life, but 3 days later when my hearing didn't return, I went to the hospital where I was misdiagnosed with a simple ear infection. That evening the vertigo became so severe that I could not even open my eyes without vomiting. My mom took me, once again to the emergency room, where I waited 4 hours in a wheelchair, unable to open my eyes or let alone move without vomiting. I was then diagnosed with labrynthitis and sent home, I vomited the entire way home and was ill for the following 2 weeks. I am now left with complete hearing loss in my right ear and tinnitus. I understand the pain you went through, I even ask the doctors to just kill me instead of make me move. I still have recurring issues with vertigo. So man, I totally understand what you went through and I hope you are well.


Hi Rich, I was diagnosed with Labrynthitis almost six months ago, three months ago I saw a Ear Nose and Throat specialist who confirmed the diagnosis, although I have not suffered with the nausea (thank god) I have had constant dizziness and a feeling of being "spaced out" or even "drugged" and annoying sense of pressure in my ears. I have been suffering now for almost six months although my symptons do come and go, I feel like I am at the end of my tether and it is taking over my whole life! I feel very isolated as there seems nobody else is suffering like me, I just thought I was going mad and feel a bit more at ease now i have read other peoples experiences. Linda


I too am a sufferer of labyrinthitis, and have been for about 25 years now, on and off. Mine tends to occur now when I am recovering from a viral infection, such as a cold. It lasts for about 2-3 weeks at a time, and the worst part is the dizziness. I also experience headaches, earache, and generally want a new head when this is happening to me. It seems an effort to carry my head around, it feels so heavy. I've tried different medication over the years but nothing worked until I tried taking Gingko Phytosome on a regular basis. Now the symptoms aren't as bad as they used to be, I can now get up out of bed and lead a nearly normal life. I sit down and relax when my head tells me to, and sleep more. I used to be bedridden for 2 weeks, and even turning over in bed took some serious effort. If anyone else has any other useful hints on dealing with this condition I'd be interested. Thanks for reading.


I too have had the distinct pleasure of viral labyrinthitis. Words cannot describe the nausea and vomiting that accompany this infection.I still suffer balance problems but have learned to live with them. I know what you have been through when the vomiting started along with profuse sweating my wife was sure I was having a stroke. Good luck with your viral labyrinthitis.


Hi Rich

I have had labyrinthitis for nealy 3 months now, the doctors have given me all sorts of tablets which get me through the day, but even with all that medication i still find it hard to go to work and have completely stopped going to the gym as i am scared of dropping heavy wieghts on my head ha ha! you are not alone mate so chin up.


Wow, I thought I was the only one having these symptoms post viral labrynthitis. I would not wish my episode on my worst enemy. I have been worried about my "spaced out head" that I get, fleeting dizziness accompanied with mild nausea, pressure in the ear, fatigue. The list, albeit mild symptoms are quite annoying and I was afraid I was missing something. Being in the health profession, even I had a difficult time explaining all these symptoms and making much sense of them. It makes golfing quite difficult at times!!!

Judith


Hi everyone..I developed labrinthitis 6 days ago and i am sure i am worsening things by worrying about it. It came on very suddenly when i moved my head and then no more that first day. Then when I woke the following morning my surroundings seemed to be moving at a fast rate around me. It was moving my head from side to side that triggered it. Then after a couple of days that settled and it was the up and down movements. Now a couple of days later it has switched to the side movements but just one side, I look pale but I feel ok otherwise. My bp is ok and I dont have vomiting which is good. Does anyone know what is actually going on in the inner ear during these attacks ? please help someone....


Hi everyone..I developed labrinthitis 6 days ago and i am sure i am worsening things by worrying about it. It came on very suddenly when i moved my head and then no more that first day. Then when I woke the following morning my surroundings seemed to be moving at a fast rate around me. It was moving my head from side to side that triggered it. Then after a couple of days that settled and it was the up and down movements. Now a couple of days later it has switched to the side movements but just one side, I look pale but I feel ok otherwise. My bp is ok and I dont have vomiting which is good. Does anyone know what is actually going on in the inner ear during these attacks ? please help someone....


Hi, wow i developed labyrinthitis about 5 weeks ago. It was not very pleasent, but i was lucky it didnt cause severe vomiting. I noticed it once i got out of bed one morning, I thought i got up too fast, and i only noticed slight dizziness when i moved my head from side to side. It kinda feels like being buzzed but without acting silly. The next day i developed sever flu like symptoms. About 5 days later thoes receded and i was left with just labyrinthists. I went to an ENT doctor who diagnosed me with it. I was put on anti-biotics and steroids to make the swelling go down. I was tested for hearing loss and i did not have any hearing loss. 5 weeks later here i am, i only feel it when i move my head, i resumed to regular activites. It only seems to get worse with headaches, but still only noticlable with head movements. I hear it takes up to a few months to be fully recovered, So i am waiting on that, hoping it will completely dissapate.


Well I've had labryinthitis for a little over a month now. I was prescribed Stemetil, which seems to get me through the day, although I still get bouts of dizziness (which occasionally makes me feel as if I'm going to pass out) and nausea. It completely ruined Christmas, and the doctor told me it may take about 3 months to clear up... I feel much better reading everyone else's experiences as sometimes I can feel totally alone in the symptoms. I wish everyone luck and we shall see what happens in a couple of months!


Fellow sufferer here. Sorry that so many of us are going through the same. Mine started last Sunday although thinking back I have had a few short attacks in past years. This is the longest and the worse. Some reports say to rest, others say to move around. I'm afraid the first is my chosen option as the other is unbearable. I am diabetic (tablets) and have high blood pressure so at first that was worrying before I knew what was wrong. Felt better after knowing the diagnosis but not better in the way I was feeling. Looks like we just have to wait for the virus to clear up - hopefully sooner rather than later. The tablets have helped the feeling of nausea and the sweating that accompanies it but not the actual dizziness.


I feel so much more at ease now because I've read other's experiences. I'm a migraine sufferer anyway, and I was wondering, has anyone found that their labryinthitis has become worse whenever they have a headache or migraine?


It has been such a relief to find this website. My viral labrynthitis started over a month ago and the dizziness lasted for about 10 days. It was a horrible experience and I felt spinny drunk the entire time. My main concern is the symptoms I have been left with, which I am told are untreatable. I still have pressure in my head, and am suffering constant ear and head aches. I keep inhaling hot water with eucalyptus, but it doesn't do very much. Does anyone have any other ideas? I'd be very grateful.


Hi, It hit me at work one night about two and a half weeks ago. Don't know which is worse the dizziness or the loss of hearing. I do know that I haven't been on my job long enough to be eligble for loa. Now I am a prisoner in my house..soon to lose that if I lose my job...does this ever end. The Dr says it is self limiting...but when is the limit up? Are we ever able to function again?


In my case, it disappeared totally after two or three weeks and I've never had any trouble with it since. I didn't have any loss of hearing though, so I probably had quite a mild(!) case.


If you are reading this i expect like me you are hoping to find some kind of help for this problem, i have recently started to recover after spending the last week and a half housebound. It started about 3 weeks ago when i had a mild dizzy spell, a few days later i started getting severe vertigo and dizziness. After going to the doctor was diagnosed with viral labrythitis and was given stemetil (which only mildly helped with the sickness side of things) I was told i chouulld be able to live my life normallly and it didnt seem to bother me too much until a 10days ago when i my surroundings started to spin drmatically. I have to say the last week has probably been the worst in my whole life, i could barely walk 2 metres without feeling like i was going to pass out, the sickness wasnt always bad just the constant sensation of everything around me moving. After 5 days I went to see a chinese doctor who advise me to try acupunture which i did and i have improved steadily ever since. I have no idea if my own body managed to overcome this awful infection or the acupuncture but it was some comfort to know something was being done by someone to help me. Unlike the wesetern doctors who told me to just put up with it as there was nothing they could do. Good luck to anyone who has it and hope the info has been helpful.


Hello-I too have had labrynthitis. At first I saw an medical doctor who put me on meclazine and anti histamines. That helped but just knocked me out. Then I saw a naturopath. She gave me a homeopathic medication which has been helpful. Recently I started seeing my chiropractor and am having cranial-sacral therapy. It has been very helpful at getting rid of the heavy headed feeling. I still have the vertigo very slightly when I lay down on my right side. I am scheduled to see an ENT soon. I just want to be myself again. It has been 3 and a half weeks. Boy did it scare me when it came on...very intense.Good Luck, glad to know I am not the only one...


I am happy to report that after three and a half weeks-it is gone. I would highly recommend going to a chiropractor and ask for cranial sacral therapy. It is very effective in loosening up the muscles that attach to the inner ear and jaw. This therapy is relaxing and is like someone massaging your head. It is totally natural and it works. My therapy started last Wednesday and within this week it is all gone. I can't believe it-I am symptom free. There is life after labrynthitis without all the medication. (I found the medication to be too sleep inducing and I never was rid of the symptoms. Just wanted to let you know-)


Wow, in looking at the dates of these comments, viral labyrinthis is going around. I woke up with a dizziness on sunday morning. I was fine in the afternoon and then it got worse again in the evening. I went to bed and slept like a bear. I get up (because i have three children and am self employed) and function with this anyway but my mom thought i better go to the doctor. I finally went to the doctor today and as i have no ear infection or high blood pressure, he diagnosed me with VL. I am to just go on with life and just not move around too quickly. It should just run it's course and be gone, when ever. I feel alot better today though. I'm being optimistic. I thought of things like a brain tumor, MS etc. This VL makes sense. I have only a little bit of hearing loss out of my right ear and have had a bit of the flu symptoms. I read in another web site the words: Involuntary eye movements." That is for sure. I feel like someone has a hold of the back of my eyes and is wiggling them as fast as possible. I am not the vomiting type, maybe that is why i am not throwing up. I hate this and hope it goes away soon. Good luck to all you who are being diagnosed with this in the near future. Great website!


I was diagnosed last week with labrynthitis. I hated life for about 3 days. My doctor put me on Ragland for the nausea and vomiting. Also gave me valum. they seem to be helping but I still don't feel normal by any means. This is by far the worst I have ever felt. My heart goes out to all who suffer from this. Hang in there. Any new "cures" or helpful remedies would be much appreciated. I'm scared to stop taking the medication for fear it will start all over again.

Annette


Well, I too have been suffering from VL for about three and a half months. I seem to have a milder case, since no vomiting or nausea occurs. Also I do not have a Vertigo type dizziness - meaning I don't feel things spinning, but rather I have a feeling of lightheadedness and sometimes it feels like I am going to pass out. The symptoms come and go, and in answer to flux's question - a migraine or a headache sometimes trigger it (also throat aches) I also have another weird symptom (which happens only in worse attacks): certain visual patterns disturb me.. Meaning if I am driving and there is a fence in the side of the road with recurring pattern, it can cause me uneasiness. Even patterns in shirts of other people can disturb me... (like tiles). Once when I visited my doctor I was kidding with him and told him that I find his shirt very offensive to people with my condition...

Anyway, the main lesson I have learned is that you should recruit all your mental powers and live your life normally. I even give lectures while having light episodes. You should conquer your fears, especially the fear of losing control, since your body transmits that you are going to faint any minute, but as you probably know, you do not faint that easily.

However, I sure hope it will just go away. It seems that while most people suffer from it only numerous weeks, others expereince symptoms for months and in rare cases even years...


I was diagnosed with VL last friday 8 days today.It first occured during school at lunch.I was fine one minute then the next i felt like i just finished spinning around and around as fast as i could, then trying to walk.I felt horrible, sick to the stomach but no vomiting.I had to sit down every 2 minutes because i felt like i would fall over any second.I finally decided i should go home becasue no matter how much i walked around it wasn't going away.After I went home my mother called the docter because a week or so before that i was getting very light headed adn falling over constantly.That had been happening to me for over a year and i'd seen the doctor for it, he told me if it continuned to go and see him again. but this was a totally different feeling.So i went to the doctors on friday and he told me that i had meneire disease.( which is another type of vertigo). I went home and looked it up on the internet and it said loss of hearing,which i wasn't experiencing. I thought i had brain cacer for a while.I was looking up alot of different diseases up on the internet. Scared of what i might have. I'm only 16 I didn't expect to get ill.I don't have it as serious as some of you.I dizzyer at night time, and after i do something that day. I've been out of school for 6 days, and may not be in school for another week.Although the medication Serc is helping. I'm still left with a head ache and the constant feeling of being on board a ship.I reconnmend getting lots of sleep.In the mourning is when i felt the best. I wish you all to get well.


I'm so glad I came by this site. I was diagnosed with VL seven years ago and it completely changed my life. I woke up vomiting and could not get out of bed without help. I was given Stemetil which helped the nausea but I was bed bound for over a week. I was tested for a stroke and a brain tumour, I could not drive for three months and was off work for six months. Even now when I am tired or stressed I have a `bad head` which does not respond to medication.The only way to make it go away is to stay in bed and sleep it off. The feeling of pressure in the head can not be explained to anyone who has not had this awful problem. My consultant who I saw for three years after the initial diagnosis, advised me to stay cool and try not to overtire myself. Some days I cannot tell my nearest and dearest just how dreadful I feel, I would be moaning all the time. On these days I have no energy and my head feels as though it is not attached to my body. To all of you fellow sufferers - KEEP SMILING (by the way, since having VL I cannot drink alcohol or stand the smell of it near me) Anyone else had a similar experience?


Has anybody heard of labyrinthitis caused by flying? My daughter was recently off work for several weeks with dizziness (and vomiting at the beginning). It started after a fight. She is back at work now but her doctor said her ear still isn't back to normal. Does anyone know how to prevent it happening again?


I WAS AT WORK 2/18..WHEN I WENT IN TO GIVE PRIVATE DUTY PATIENT SOME MEDS AT 2AM..MY HEAD BEGAN TO REEL.I MADE IT OUT OF THE ROOM AND INTO THE BASTHROOM WHERE I VOMITED UNTIL I COULD NOT MOVE...LITERALLY.THE PATIENT SAVED ME.I WAS TAKEN TO THE HOSPITAL BY AMBULANCE.I COULD NOT PHYSICALLY GET UP ON MY OWN.I HAD BEEN IN THERE 51/2HRS. I HAD NOTICED FOR MAYBE A FEW WEEKS DIZZINESS AND A LITTLE FATIGUE...BUT MOSTLY MUSCLE SORENESS..ANY ONE ELSE HAVE THAT? IAM MIDDLE AGED AND THOUGHT IT WAS JUST THAT. IAM BEING TREATED WITH MECLAZINE ALSO. I RECEIVED 21/2 DAYS OF IV THERAPY AND PHENEGRINE VIA IV DURING MY HOSPITALIZATION.IAM HOME NOW AND REDUCING THE DOSAGE STEADILY,TOAVOID THE CONSTANT SLEEPING.I DON'T THINK I HAVE ANY HEARING LOSS.BUT I CONTINUE TO BE WEAK. THERE WAS A TIME,EWHEN MY HUSBAND AND I WERE OUT ONE EVENING AND I HAD A FEW DRINKS.I WAS VERY ILL THE NEXT TWO DAY'S.WE LAUGHED IT OFF AND SAID I WAS GETTING OLD,I DID HAVE REELING AND NAUSEA THEN.THIS WAS A LEAST TWO MONTHS AGO! HAS ANYONE ELSE HAD SYMPTOMS THAT LONG BEFORE?


I was so happy to find this website!

I have been suffering since 14-Nov-2003. I woke up one day from my sleep and felt sick to my stomach. The whole room was spinning out of control--and I could not stop vomiting.

My husband took me to the ER and they thought that I had a viral infection. The next day I felt perfectly fine. However, a few days later I began having these episodes of dizziness. I remember getting in my car to drive to work and I couldn't make it off my street because the houses looked like they were moving up and down.

When the dizziness did not subside, I went to the ENT specialist and he ordered an MRI and various blood tests. Everything came back negative.

These dizzy spells have lasted for over 3 months now. Some days are worse than others. I was told that the viral labyrinthitis may have caused a condition called benign paroxysmal positional vertigo .

Has anyone else received this diagnosis? If so, please give me some advice on how to manage this condition. It is affecting my entire life and I feel miserable all the time.


Hello fellow sufferers-This is my 2nd bout with VL-First time landed me in the ER. Here we are 18 months later and self diagnosed, I can breath my way through the vomiting. My Doc gave me Antivert which helps me sleep-but does nothing for daytime. This bout seems to be lasting longer (4 weeks) than last time. I had no symptoms till I fell out of bed-then the onset of a headcold-now just this complete fog and clumsiness. Has anyone tried herbal remedies? Would love any other advice!!! Especially for the tumbling?


Thought I was the only onw suffering from this. Although I have never been diagnosed with this illness I new from research on the web that my symptoms must have been Viral Labyrinthitis. It first happened three years ago. I was driving a car when my eyes suddenly darted back and forth involuntarily. Several days later I noticed this occurring again but also had a feeling of imbalance. Well my heart rate went sky high. Not knowing what had happened I went to the local ER. They performed testing to check my heart, Ct scan of my brain and some other tests. They found nothing. The next few days the condition worsened. I drive a car for a living and did not trust myself driving a car so I called in sick until I could see my DR. I never vomited. Only my disdain for vomiting kept that from happening. I had terrible head aches and fatigue along with other symptoms all of you describe. When I went to my doctor he thought I was having anxiety attacks. Well at that point I may well have been because of what I was feeling. He sent me home after prescribing antivert. I revisited my doctor several more times and more testing was done. Heart testing, ct scan even went to ENT specialist. No body could diagnose it. Well I returned to work a month later still with milder symptoms. The symptoms waned at about 6 months. After three years I still have relapses about every 6 or 7 months, mostly during the winter months. I have had very many good months with mild symptoms and months with no problem at all. The relapses I have seem to lessen in severity every year. I hope that continues. Just wanted to give my input and to tell you that you should fight through the bad days and that better days will be ahead. Keep up the hope.


My 16 year old son had severe incapacitating vertigo yesterday which hospitalized him and scared us all. He has a slightly elevated white cell count, but the doctors could see nothing in the ears, though a few weeks ago he complained about hearing loss off and on at which time I took the typical Mom route and told him to stop blasting music through earphones. I'm happy to have found a possible name for what he's got: Labyrinthitis. I'm curious to know if any of you experiencing or close to someone experiencing this horrible condition relates geometrical based video/computer games/programs as a possible antagonist. Maybe cell phones, etc. as well.


What 'The Labyrinth' said about patterns aggravating symptoms sounds very familiar. My post VL symptoms are not too severe, but I do constantly get this lightheadedness, like I have just stepped off a rollercoaster, and I find it is exacerbated and sometimes even triggered by reading or using the computer. Using the telephone also makes the spaced out feeling worse. Does anyone else get that? I feel like I just want to rest my eyes and keep my head still. I also still get ear aches and fullness in the ear. I've just started seeing a cranial osteopath and its helping relieve the headaches and earaches.


hi,

I 'think' i have VL.

I have had symptoms of 24/7 dizziness / brain fog / confusion / imbalance / fatigue / depression / headaches / uncontrollable eye movements since Nov 2003.

My neurologist just said i had a viral infection. I am going back Tues and i am going to put it forward that i think this is VL. I seemed to get better Jan-Feb, but am currently suffering a relapse. Its not a good feeling but hang in there!!! I am very lucky though as i have not suffered the severe vertigo (spinning senations) or vomiting, altough i did vomit midly once before christmas. I dont think i have been doing myself any favours as lazing around the house is apparently not good for recovery, ive heard carrying on normally (or to the best you can without over-doing it) helps your brain reconfigurate as you carry on with normal activities. This is hard to do because of the anxiety, fatigue and dizziness of course. I think tomorrow is a new day, and a new regime for me. I will recover from this. Four months tomorrow, just think another day is another day to recovery :-) best wishes everyone


I have had maybe seven episodes of the sensation that everthing was spinning (Vertigo?). A few when I was 8, some when I was in high school, and a few just the past two weeks (I'm 37 now). Each episode only lasts about a minute or two, but they are severe and bring on cold sweats and headache. The latest happened while I was driving, which scared the hell out of me. I had to pull over and ride it out. In between each episode I'm totally fine. I rock climb, mountain climb, bike alot...etc. I was in the Navy on a ship for a few years and no episodes then. I can handle the spells. I don't get nauseas. It's the uncertainty that bothers me. I'll be at the ENT on Monday. Thanks to all that have posted their own experiences.


HI, I have been suffering from labrinthitis for the past 9 weeks without a day off from the symtoms. I have two small children aged 4 & 1, I find it hard to do any of the day to day things with them. I have had very little sypathy from the doctors and am waiting for my Emergeny appointment at the Ent (Thats not untill April). I am at my witts end with this and have even contemplated taking my own life over the past few days. I am on Serc. Please Help!!!!!!!


I sympathise with all of you. I was diagnosed with VL last week and after a bout in hospital via the ER I am back home again. I ditched the Stematil as I was not having nausea just the vertigo and some tintinitis. Has anyone come across any natural therapies to help overcome the symptoms?


So glad to come across this site dedicated to those who have or are suffering from VL. I'm 45 and I was diagnosed with labyrinthitis 2 months ago and can honestly say it has been the most debilitating illness I have ever had. The violent giddiness and vomiting was a sudden and frightening experience. I also had jerky eye movements, and just opening my eyes caused the room to spin and jerk constantly. After 3 days the GP put me on Betahistine, which didn't really have much effect. I was told it would clear up within 2 weeks, but that was a joke - I didn't feel normal in the head as the dizziness was constant (although it gradually became less severe over time). I couldn't drive or work and it's clear from other entries on this site that it commonly takes a lot longer to subside. As a Wholistic Life Coach, I am aware that there are often emotional messages behind ill health and am a firm believer in seeking alternative help. I weaned myself off the medication over a period of a week, and sought other methods of help. A combination of cranio-sacral therapy, acupressure and homeopathy, and the realisation of how stressed I have been, has finally led to a 90% recovery. Only in the past 2-3 weeks or so has the constant sensation of dizziness inside my head eased and I actually feel normal again. Conventional western medicine focuses on symptomatic relief at best, and does nothing to help any underlying cause. We tend to put our trust in the people in white coats, without understanding that they don't always have the answers. The past 2 months has provided me with the opportunity to work through some emotional stuff and I can now say it's a blessing as I have deepened my knowledge of issues surrounding emotional ill health which I can now use in my work as a coach. Things I have learnt: 1.Listen to your body and look after yourself while you heal 2.Find a really good complementary health practitioner 3.Start moving about and walking, driving etc as soon as you can, even if it triggers the dizziness, as it helps the delicate balance mechanism in compensating and retraining itself. This provides a more complete recovery in the long run. Hope this is of comfort to those who are currently suffering.


Hi My daughter is 13 and she has had viral labyrinthitis for almost 2 months. Her ENT was sure she had migranes, and I took her to my neurologist who put her on migrane pills because of her ENT's diagnosis. At least her ENT did order an ENG test, which did show she had VL. She has been dizzy for 2 months, missed school for 3 weeks, she is in 8th grade, missed cheerleading for 3 weeks, which is important to her, and got in trouble for that from her coach. I worry about her all the time, because I know she is functioning constantly feeling dizzy. I have no idea how that feels. Her ENT just put her on 6 days of steroids, and is sending her for inner ear movement therapy, which she is going to start in 2 days. He also is sending her to a doctor her specializes with this at John Hopkins, since we live in the Baltimore area. My daughter has been so brave with this, and I was so happy to come across this website this morning and read your comments. Your comments will help me know how to help her, and help me know what she is going through. I knew that the migrane thing never sounded right. My neurologist was just going on the diagnosis that my daughter's ENT sent him. If you have any comments that can help my 13 year old daughter, I would appreciate hearing from you. I wish all of you the best. Thank you, Judy


I woke up early on 3-11 and could barely stand up to go to the bathroom. Had to hold onto the wall the whole way there and back. At first I thought the wine I had for dinner the night before was still in my system! I decided to take it easy the next day and just relax. I was nauseated and dizzy. Had to lay still to avoid the swirling effects. Had no appetite and could barely eat anything. When the symtoms did not go away, my husband took me to the doctor on 3-12. I was diagnosed with acute labrynthitis. Started a perscription of meclizine which has completely eliminated the nausea, but I still am experiencing a little dizzyness and blurry vision. I decided 2 days in bed was enough and went out all day 3/13. Managed to get around and drive ok. Do not have complete balance and I feel like I'm on a boat. Need to steady myself. I believe that forcing yourself to move around is helpful. I hope my symptoms go away completely in a few more days. I plan to try to cranial sacral therapy and if anyone has any other non-perscription recommendations, please let me know.


just a little update to my previous comments,i am just over...or maybe more accuratly...better. its been a month.i was able to go off the antivert,four days ago. i now have the weirdest thing...if i bite something hard..a candy,or food. iget the sensation of dizziness and a hollow funny feeling in my head.it only last second's,but is very scary.it feels as if it will all start again. yes patterns and turning my head too quickly do trigger the dizziness. will the sacrocranial therapy help the tightness in my neck and back? ive also developed jumpy legs when sleeping,something i never had before. hope you all feel better soon..you can't say this hasn't taught you something..either good or bad.


I am a 52 year old male from UK.I thought my time was up! I had this horrible viral infection starting Monday 15th March 2004 early evening.Fortunately I was taken to hospital where I was diagnosed with Labrinthitis. I was given medication which helped. The first symptom was a feeling of dizziness followed by nausea. The room was spinning at 90 miles an hour, then I started to vomit. This lasted for some 3 and a half hours. I still feel dizzy now although it's only been 3 days since this started. I was advised bed rest for 3-5 days. Now my backs aching with staying in bed so long. The strangest thing was that I was able to recount everything as it happened and had no other symptoms i.e chest pains or head ache. I hope to be clear in a few days.


Hi I have been off work for 6 months with Labyrinthitis and sinusitis. My Doctor told me I had this condition from the very first month that I was signed off. Like fellow sufferers I felt very flu like to begin with, which increased to the dizzyness, sickness, ringing in the ear etc. I waited 4 months for an appointment with ENT and have only now received their report. I ended up paying £485 for an MRI Scan as no Scan was forth coming via the NHS and the worry that something else was going on in my head was too much to wait any longer.

I am glad to say yesterday the results of the MRI Scan was negative and it was money well spent!

I have been signed off for a further month and now have to face up to the fact that I have to wait each morning to see how I am - as we all know there is no cure! I have tried reike - which is an amazing experience and I would trully recommend that you should try it as it has an amazing calming feeling to it and somehow everything doesn't feel too bad! I was interested that someone has recommended acupuncture and I will surely try that as I am getting to the stage that I will try anything.

I do hope to return to work next month - on a part-time basis but I am very worried how I will cope - but hey you got to earn a living somehow.

It was great to find this site and see that I am not the only one.

Good luck to you all S x


Gee, I read the stuff other people have gone through with this and I must admit I feel fortunate. Less than three weeks ago, I had an attack of vertigo that lasted about a day and a half. Scariest moment in my life.

Went to the doctor. I could barely walk. They put me in a wheelchair, gave me an MRI, x-rays, and a hearing test. No signs of any damage to anything.

Sent me home, and I slept off the vertigo. Since then, I've had a weird balance problem. The world is a hand held camera. I can walk, work, and think. But I tire easily, especially after a hard day's work.

My biggest fear is this will never go away, and that I'll spend the rest of my life like this. I'm a teacher and writer and I worry how this will effect my performance at these tasks. I have two kids, can I be a proper Dad to them? That sort of thing.

Luckily, my symptoms are basically a nuisance at this point. I just float a bit when I walk. Two doctors have diagnosed labryinthitis, and from what everyone is saying here, that sounds right.

I only hope it eventually goes away. Should try apucuncture and the cranial therapy, I guess. In the meantime, I know I could have it a whole lot worse.

It's just such a weird thing.

Best

David


Thanks to all for the details on this site. I sympathize with you. I too have been diagnosed with labrynthitis and have spent 10 days fighting the vertigo. I have been spared the severe nausea and vomiting, but the dizziness persists. Question: Kitt reported feeling a tightness/pain in the neck and shoulders. Has anyone else felt this too? Drs. have me on Anti-vert (for dizziness) and Entex (to dry me out). Dr also said that drainage was key--getting the fluid out of the inner ear. Anyone else hear anything like this? Am going to see an ENT ASAP. Well wishes to all!


I have been dealing with the after effects of labyrinthitis for just under four months. The main symptoms now are ear ache, tightness in the neck and light headedness when i do anything which exerts me, or when i read/ use the computer. The neck pain is prevalent, (to answer Bonnie's question) it feels like there is a clamp around it, similar to the feeling you get when your glands are swollen. I'd be interested to hear about anyone else's experiences with this.. and also of ear ache. Both symptoms are constant, alongside a residual pressure or 'fullness' in my inner ear. Good luck everyone.


i also have been suffering from v/l.I had a raw throat and cold/flu to start with , then both my ears started buzzing . I woke feeling very unbalanced and very sick.I have tablets for the dizzyness.My main concern is my ear,as one of my ears has still not returned to normal, i still suffer from tittinus/full feeling and almost deaf in it.I find i am very tired and wish it would go away.My heart goes out to all of you who have suffered from this awful virus.Its my 10 th day now..how much longer does this go on for?


Im so glad to have found all of you. It is very comforting...

March 24th about 7:30 pm I was on the sun-porch with my mother talking.. when sitting down I got violently dizzy... but it went away.. I chalked it up to a head rush.

About 9:00 that same night I was sitting on the couch with my family watching tv when that feeling came back.. worse.. and wasnt going away this time.

I yelled for my mother to call 911 cause i thought i was dying. My daughters first b-day was a week away I couldnt die.. :( The EMT's came.. checked my vitals and they were fine. They told me right off the bat that it was probably just vertigo.

So they left and i still felt weird.. spaced out.. like cotton candy... like im here but not.. like im in a dream. We went to bed.. woke up the next day and i was still dizzy.

for the next week every morning i would open my eyes.. and say ok am i still dizzy? i would get up and yup stumble to the bathroom I would.

My inlaws came to visit for my daughters party and thank god my mother lives with us. My daughter has plenty of love and care even if it isnt from me :( which is bitter sweet cause I want to be the one playing with her.

I had to lay down thru her b-day party.. completely missed her one year check up.. and I have been couch bound for weeks not even able to pick her up or hold her without fear of dropping her.

The day after her party I was laying in bed in the dark during a violent dizzy spell.. my body got warm and and my arms went numb i thought i was gonna die again. we called 911 and this time went to the ER. That jerk handed me zanax and told me it was just my nerves... well if it is then why am i still dizzy and in a brain fog?

2 weeks after that i went back to my dr cause i was still constantly dizzy.. spaced out... miserable. he sent me to an ENT.... who said.. Viral LAB... sent me home with Ativan.

Ativan helps me sleep and keeps me from calling 911 .. thats about all. everything else is the same.

My husband took me out to the store the other night just to see how i would feel. I was looking at mothers day cards and it looked like the wrack of cards was melting and oozing down towards me. we had to leave.

being in the car isnt as bad as u would think. I could NOT DRIVE NO WAY but as a passanger im fine.

So 2 more weeks had passed and i went back to the ent.. he ordered an MRI which i take on monday may 3rd... and also had me go to the opthamologist which i did last week and i have 20/20 vision with no abnormalties.

it now as been one month one week and one day and i see no improvement in site. I am so scared that I will have this for the rest of my life and will never beable to be the mother to my daughter that i have waited my whole life to be

Im angry and depressed that i have been jipped out of this past month of her life.. especially her first birthday.

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 just wish this would all go away !!!!! i want to feel normal again. I want my daughter to have her mommy back ..

it breaks my heart to see her run to grandma when she has a boo boo instead of to me cause its been over a month since i can comfort her. Its like she is forgetting me cause im to busy laying here on the couch

LABYRINTHITIS SUCKS


Hello,

I was relieved to read that my husband's symptoms are very much within the realm of labyrinthitis weirdness. A week ago I took him to the ER because he was totally out of it, didn't know his name, where he was or what was going on when the EMT's came to the house. He has really terrible headaches most of all now, but had nausea and vomiting at first, with dizziness and difficulty speaking, finding the right words, feeling confused, eyes hurting, etc. It was the mental disorientation that scared me most. The ER doctor prescribed meclizine which made my husband just sleep all the time without really lessening symptoms. I am searching for alternative treatments for him. The homeopathic Merc. Sol. is apparently good for an inflamed inner ear so he's trying that. Does aspirin even help anyone with the headaches? I've been a natural healing advocate all my life and don't even have experience with aspirin. Eating any salt seems to rapidly make matters worse for my husband, so none of that for now. He might try acupuncture or cranio-sacral therapy. It all seems to have come on after a tooth broke or possibly some sinusitis...not very clear on it all...it came out of the blue, though as a toddler he had something similar...nothing since then. Good luck to everyone. I sure hope we can find something that works too.


I was diagnosed with Multiple Sclerosis last year and began to panic in March when I suddenly woke up vomiting and unable to move from my bed due to the dizzyness,so my first thought was that it was my MS. I was rushed into to hospital and was then diagnosed with Labrynthitus on the 19th of March. It is horrible but the symptoms are easing now over a month later due to alternative medicine. I am still dizzy and my head feels spaced out and my balance is poor but I am trying to deal with it. I agree with the neck feeling tight and headaches do make it worse. I have gone back to work part time (as we all need to earn) and am trying to carry on with life as normal because over the last week I have been feeling really low with it and just want to be normal. I was prescribed Betahistine. I am now trying accupuncture and herbal tablets which seem to be making the symptoms a little less severve week by week. I am willing to try anything as I just want rid, so the next thing to try may be carnio-sacral therapy. Fiding this website has made me feel no longer alone. Good luck to you all.


My 11 year old daughter endured 3 severe attacks of viral labyrinthitis in 2002. Thankfully a CT brain scan and MRI were clear but she to was left with terrible symptoms of dizziness, spaced out feelings, severe tiredness, blurred vision. Alternating levels of deafness...what she use to call tin can hearing, headaches, etc. Menieres has not yet been ruled out but the wayforward for her has been time and vestibular rehabilatation at a specialised balance clinic. If your symptoms continue it is best to see an ENT who specialises and understands the effects of inner ear disease. It has been difficult for us, in the past, dealing with paediatricians and GPs who do not understand how vestibular disorders affect the whole body.


Hi all not nice is this Labrynthitus, seemed to get it driveing back back from Heathrow when I had to move my head, no other signs at all, the only thing I can think of is that I caught my ear on the car door getting in a day or two before this started, but I dont have any ear pains.Have been of work now for a week am self employed driver so I have to be fit. I have been prescribed stemitil but seems to have no action only feeling a little sick but have had the sweats. Hope you all feel better soon.

Dave


Hi, I was diagnosed with Labrynthitus on May 16, 2004. My symtoms were vomiting, dizziness and extreme weekness. It began when I was cleaning the kids room and suddenly I became very dizzy. I thought that it was just another one of those dizzy spells but after a few minutes I realized that this was different. I was rushed to the hospital and after the tests all came back normal the doctor told me that I had an inner ear disturbance called Labrynthitus. I have been sick for three days now and I'm depressed and miserable. I'm still nauseated and feel heaviness in my head. I am weak but I still force myself to move around and get things done in the house. When I feel I've had enough I lay down and rest. I have gone cold turkey and refuse to take any medication. Resting seems to aliviate my syptoms. This is even worse then the flue though and my heart goes out to all that have experienced it. My room-mate has had it and she tells me to just hang in there that at some point I will feel completely well. My advise is to just try to relax and not push yourself beyond your limit. It doesn't last forever.


Hi All After reading about this horrible condition I have seen that ginger helps, I bought a couple of ginger cakes and biscuits the other day this takes away the sick feeling, good for sea and travel sicknes. Its been 8 days now feeling a little better.

Dave


Hello

Its coming up to five months since my viral labyrinthitis started, although most of the symptoms have eased off now. However I am still getting really bad ear pain, right inside the ear. Its like a permanent throbbing. It gets worse/ better when the presssure in my ears gets worse/better. Nothing will shift it..

Sound familiar to anyone??


Hi it's Susan again. I've now had Labyrinthitis for about five days and feel just a little better. I'm still a bit nauseated and I have sweats from time to time but it's not as bad as it was the first three days. I haven't been able to drive since Saturday May 15, but I have someone drive me around when I need to get things done. I feel some pressure in my right ear and sometimes I feel as if my brain is shifting. I can't wait to resume my daily activities and feel free of this awful virus. I started my vacation on Saturday and by Sunday I was sick. I have one more week left of vacation and I don't want to spend it sick and in bed. Good luck to all and a quick recovery.


As selfish as it sounds, I'm so grateful to know there are people out there who understand how debilitating this thing is. Mine came on gradually after a pharmacist made a mistake prescribing predisone and ordered me to take eight days worth immediately--I'd already been given 60 miligrams in the Ed for an alergic reaction.

Before the overdose, I worked three jobs--I'm am instensive case manager working exclusively with clients meeting our state's criteria for "gravely disabled." I was also the on-call carisis case manager weekends for adults with devoplmental disabilities. Now I do nothing but stay in bed.

The dizziness is miserable but the vertigo I experience seems mild to what I read in the stories above. My prolems began with what I thought was the stomach flu; upon getting up in the morning, I had bouts of violent retching. Felt better as day progressed. Then had a few good days until the "flu" returned. Three months later, I can't work--I get up each morning and the retching lasts for hours. Going up and down stairs is horrible but the worst is riding in the car. I have seen an ENT--he says my MRI was normal. He can't explain the mild dizziness or the retching. Will this ever go away? I want my life back! The ENT doc said this isn't labyrnthitis--he said he could tell my the MRI. I'm beginning to feel like a crzy person.

Do any of you experience the retching as the worst symptom? I retch so hard I lose control of bladder and bowels. I'm 54--could this just be old age? I feel so completely alone and useless. I sure could use a word of encouragment. At this point, there is no quality to my life.

Thanks for listening,

Annie


oooooooh that dont sound too nice babes! i feel srry for you! gutted! glad nothing like that has happened to me!!! ha ha mother fucker! xxx


this is my second posting.I have had labrithitis for 8 weeks now.I initially had nausea and the feeling as if i was going to vomit,plus the buzzing in the ears/hearing lose. I feel much better in myself, but i still have the tittinus and partial hearing lose in one ear.I am due to see a specialist soon.In answer to toms question, i have of late been getting slight ear pain in my affected ear, nothin too severe,but uncomfortable all the same.my doctor feels it could resolve its self within the next 2 months.if only ..... fingers crossed


Hello everybody, I have been suffering from viral labyrinthitis for just over a year now. I have posted my imformation on here before. One thing that worries me is I am going on holiday in a few weeks time and really worrying about the prospect of flying, and how it will affect my ears. Does anybody know any thing I can use or take that might make my flight easier? Also I love swimming, any body got any ideas about that too? I am grateful for any imformation any one can give me. Thankyou Linda


linda, we could all give you information , but can i suggest you should speak to your GP for the best possible advise.what symptoms do you still have?.Oh and happy hols ......... I have noticed that the symtoms vary from person to person.I had/have little of the balance disturbance, but dreadful ringing/noises in ears and partial deafness.Good luck


Hi everyone,

I was diagnosed with Viral Labryinthitus in July 2001. I then saw a vestibular rehabilitation specialist in Harley Street, London who gave me special excercised to do and recommended I play tennis at least twice a week so retrain my failed balance organ. This seemed to work and by Oct 2001 I was feeling back to normal. Due to several stresses in my life the labrynthitus returned in March 2003 and thankfully only remained for 6 weeks. When I have a rebout of the illness I have severe headaches, earache/fullness in the ear, general brain fog and feel extremely tired. I had another rebout in December 2003 and have been having dizzy spells, earache and headaches on and off since then. I have been seeing an acupuncturist for 6 weeks now and have been playing tennis again regurlary which seems to be helping. Badminton and table tennis would also be good for those of you who do not enjoy playing tennis.

If anyone has any other suggestions of how to get over this annoying illness permanently or tips on how to avoid feeling awful then please let me know

Nice to know there are others out there also going through this terrible illness

Susanna


Hi

I can not beleive I have found a web site with so many stories that I can relate to.

I have not been clinically diagnosed with VL but have been suffering from symptoms of severe droning in my ears, extreme dizziness and feeling nauseous since Sept 03.

Does anybody else have the symptoms of muscle spasms, similar to that of parkinsons??? I have little head jerks (like a little wobble) every now and then and it is beggining to really get on my nerves. I havent told anyone about these symptoms as I feel such an idiot.

In Sept 03 my GP diagnosed labyrithitis and gave me stemitil which cleared the symptoms within days. On stopping the stemitil the symptoms came straight back, again I went on stemitil.

Everytime my GP told me to stop the symptoms came back more violently than the last. Eventually he told me to stay on them and that he would refer me to a specialist. Hospitals in the UK have such a long waiting list and I eventually saw a consultant in Feb 04, I am now awaiting an MRI scan which I have been told will be a 13 month wait which is ridiculous!!! I have to stay on the tablets until then.

I saw another consultant last week who has now told me I could possibly be suffering from menieres disease but is unsure as my symptoms come back straight away after stopping the stemitil which is not typical of menieres. I am no better off as he has put me on different tablets (cinnarizine). They make me feel so drowsy I nearly fell asleep at work and they also bloat out my stomach which is really painful. I am so fed up of being a pill popper and not really knowing for sure what is wrong with me.

Although my boyfriend and family are supportive they dont really know what I am going through. I feel as though they think I am putting the symptoms on. When the symptoms are at their worst I cant get out of bed - not even to go to the toilet, I cant read, watch tv as the slightest movement sends the room spinning at such a speed it makes me feel sick. I feel like a child again, I cant do anything for myself, I feel totally inadequate.

The longest the tablets have taken to stop the attack has been 2 weeks. I feel completely isolated, the droning makes me feel like im going round the bend, I feel like a hypocondriac (excuse the spelling!!!) I am forever feeling unwell.

I have tried to relate the attacks to things that I have done... have I used the mobile too much, did I drink too much at the weekend, did I not get enough sleep??? Could it be from inhaling helium balloons on my sisters 18th birthday? Stupid thing to do but could that be the cause? And if so why am I the only one suffering - we all did it!

I can relate to so many of the stories that I have read on this site, I too feel like my life is on hold, the thought of going on holiday scares the life out of me, will the plane upset my balance? I can no longer go in a lift as that feeling you get when it stops carries on and on I cant go on rides at the funfair, infact I cant even watch some of the rides as it sets the spinning off again.

I never want to go out, I'd much rather stay indoors than go anywhere which I feel my boyfriend is getting annoyed about (not that he says so)I cant tell him how I feel - he wont understand.

I'm 31 years old, I really want to start a family, my GP tells me I cant whilst taking these tablets so what do I do? I cant come off them!

I feel like Im going on and on and that nobody will want to read what I have to say, but in a way this is therapy, I feel that maybe somebody will read this and just by doing that I know that they will relate to what i am going through.

I would really like to know about any alternate therapies out there, I have tried hypnosis and accupunctute - both didnt work, I may try reiki soon, Im sure you'll agree, when you have these symptoms - you'll give anything a go to see if it works.

Any feedback would be very gratefully appreciated.

Thanks for taking the time to read this!

XXX


I just want to say that I read every comment posted here. Unfortunately, though, I have no more insight into how to deal with labyrinthitis than I did when I suffered from it.

If you do have Meniere's, don't despair: Alan Shepherd flew to the Moon on Apollo 14 despite suffering from it!


Wow, I didnt expect such a quick response but thank you.

Im writing again as I went to bed last night so excited about finding this site and remembered a few things I hadnt written.

As I said last night, I saw a different consultant last week. This is due to the fact that the 1st consultant I saw done a few tests on me and one of them was closing my eyes and marching on the spot. All fellow sufferers know that having the symptoms and doing a simple task like this is hell. To my disbelief the consultant told me to sit down and that I suffered from a lack of confidence!!!!!!!! If only that is all the problem is. Hense a new consultant! (whom is very helpful - thankfully)

Also, I would like to outline a few other symptoms I have and wondered if anyone else had the same...

Memory loss.....Im becoming very forgetful, I dont know if it is the tablets or not or just my imagination, simple tasks like adding up are becoming harder... its as if the numbers Im adding are coming from either side of my brain but dont meet in the middle, I use a calculator at work now!!! And my speech, I often cant get my words out or forget what Im saying half way through. Its as Susanna said, before my 1st message, it really is like a brain fog! Im sure Im going mad!

When I have the drone in my ears I cant hear my boyfriend, people on the phone or the tv, its like my head is in a fish bowl. However, the people that live in the flat above, their footsteps seem like a heard of elephants in my head, I find that very strange!

Stress makes things worse. I work on reception and deal with a lot of demanding people, I often have a 'swimmy' head at work, even on the tablets and can only put this down to stress as when Im home at the weekends I rarely get them!

Im tired all the time now, I fall asleep when I get in from work or after dinner, this really gets on my nerves as well as my boyfriends. I used to have 5-6 hours sleep a night, now I have at least 8-9 otherwise I cant function.

Thanks for listening. And thanks for your comments, I have no plans as yet to travel to the moon but hey - who knows!

XXX


Hi,

I've had VL since March 04. It started after a sinus infection, with vertigo (the room spinning) after I awoke. Luckily, it only lasted 1 hour. I took antibiotics, antihistamines, and ativan (a tranquilizer)given by my GP. My symptoms were unbalance, constant dizziness, fatigue, and as someone said looking at the world through a hand held camera.

The constant dizziness lasted 8 weeks. I still have trouble tracking visually. My ENT and Neurologist said there's nothing for it but time. I went to Physical Therapy for homework exercises. Basically slowly increasing exposure to things that make you dizzy. Watching fast moving shows on tv, walking through video stores, driving with others to watch fast moving traffic. They said do all you can when you feel rested enuf. It helped some.

They suggested a library book called "Feeling Dizzy, Understanding and Treating Dizziness, Vertigo,and other Balance Disorders" by Brian W. Blakley, M.D., Ph.D. and Mary-Ellen Siegel, M.S.W. Hope it helps.

I hope all of you have some support system helping you get through. These symptoms are very disturbing and tiring. My neurologist said Nystagmus (a jittery movement in ones eyes after looking left to right while following a pen) is usually present with inner ear nerve disorders. It's what causes the difficulty watching tv, etc. It improves over time.

Best wishes to all, Ann


hi,

my v/l started on 24 june and at first i put it down to having a drink the night before, however when hung over the room doesnt normally spin. i was stumbling around a lot and banging into things. i was also constantly dizzy. i thought that a good night sleep would be the answer. the next morning i fell out of bed stood up and continued to stagger about, again feeling very dizzy. i seen the dr that day who just told me to keep an eye on it. thanks!! i got home, made a cup of tea and the whole room started to spin, it wasnt spinning fast but i couldnt focus on anything as everything was moving from right to left. i struggled for the next few days walking around as if i was drunk, not feeling myself and occasionally falling to the floor. i finally seen another dr who mentioned v/l and has prescribed me some tablets which i have not taken yet. on the 10th day i woke up and felt 100% better and have done ever since, the whole time i was never sick nor suffered any pain or discomfort.i will start taking my medication as i do not want this to come back. good luck to everyone, i only had it for 10 days but for me that was bad enough. if it does not come back at least you will know that life does go on afte viral labrynthitis!


hi,

my v/l started on 24 june and at first i put it down to having a drink the night before, however when hung over the room doesnt normally spin. i was stumbling around a lot and banging into things. i was also constantly dizzy. i thought that a good night sleep would be the answer. the next morning i fell out of bed stood up and continued to stagger about, again feeling very dizzy. i seen the dr that day who just told me to keep an eye on it. thanks!! i got home, made a cup of tea and the whole room started to spin, it wasnt spinning fast but i couldnt focus on anything as everything was moving from right to left. i struggled for the next few days walking around as if i was drunk, not feeling myself and occasionally falling to the floor. i finally seen another dr who mentioned v/l and has prescribed me some tablets which i have not taken yet. on the 10th day i woke up and felt 100% better and have done ever since, the whole time i was never sick nor suffered any pain or discomfort.i will start taking my medication as i do not want this to come back. good luck to everyone, i only had it for 10 days but for me that was bad enough. if it does not come back at least you will know that life does go on afte viral labrynthitis!


Hello to all fellow sufferers !! I have been in your gang now for almost a month , it's only now that I have been able to function properly - even typing this message a few days ago would have been impossible !! I was also prescribed stematil by my GP and told to rest - like I could really do bugger all else ! - What he failed to tell me is the information that I have found from all of you on this site i.e. The fact that it could last all of my life rather than a few days like he said , also different alternatives like chiropady etc , so a great big thanks to all of you that have risked throwing up just to type a word of comfort to people like me seeking answers and alternative medicines . A great big thanks should also go out to the creators of this site because the other sites that come up on search engines are a load of pants and not helpful at all.

I wish every last one of you the very best of luck with your Vertigo and hope that like me we can move on with normal lives again soon .


Hello there This has been a comfort and also slightly alarming in terms of how long people have suffered. After two months and my fourth week off work, I seem to be on the mend. No nausea for me but the dizziness and extreme fatigue has been horrible. I ended up in casualty because after trying to go back to work (I'm a teacher) I got to the end of the week and just couldn't move any more or even speak. I thought I was agrophobic because I couldn't handle crowds or supermarkets and at my worst was pretty much hallucinating as I tried to walk. Someone mentioned memory loss- I really struggled with recalling words in the early stages - not helpful when you're an English teacher. I've been walking with a stick for quite a while now to prop me up and increase my confidence when walking. Recently started acupuncture, taking omega-3, eating chicken (I was a veggie for 18yrs...), taking Floridax (herbal liquid stuff) and increased Betahistine to 16mg. Beginning to feel normal again and am still off work. Who knows what worked but who cares...keep positive, we will get better!


HI

I've had labyrinthitis on and off since I was a teenager - and am currently suffering from a bout - fairly mild, but still debilitating. I am dizzy a lot of the time - feeling tired and also have memory problems.

I have a specific question and was wondering if anyone has similar experiences, and advice: when I swim - especially for any length of time, it tends to bring back the dizziness - this time it's already lasted a few days. Has anyone had similar experiences? And I was wondering if I wore ear-plugs whether that would help avoid this. Any suggestions or comments welcome.


Hello I was had slight VL or vertigo symptoms over a year ago and was told that it was a side affect to the antidepressants I was taking. Well I've been off of the antidepressants for a year, and on June 30, I was diagnosed with VL. I don't have the vomitting but I do have the occassional nausea. I also have hot flashes, but I just thought it was because I was menopausal. I also have headaches and I sleep a lot with and without the Meclizine I was prescribed. My head feels like it is super duper heavy and my neck hurts when I'm up for too long I guess because of over compensation for the "heavy head". My driving is impaired so I have to bum rides from people.

Does anyone know if riding airplanes make the symptoms worse?

Dee Dee


I'm really glad to have found this site. This is my fourth bout with VL and I had no idea it could last as long as you guys are saying. That's really depressing. I'm on Week Seven with this bout and it's the worst case ever. The nausea, dizziness, fatigue, and fugue head are enough to drive anyone mad. But to think this could be forever... I hope not. Does anyone know if there is permanent damage to our body after having had it, provided we ever recover from it at all?


In reply to Dee Dee, riding aeroplanes or similar things which disturb the liquid in the inner ear (making ears pop etc) will most likely make symptoms worse, though this isn't true for everyone.

I now think that I have recovered from labyrinthitis though it has left me with slight agrophobia and a fear of illness in general...

Whatever you guys do, don't lose hope, remember there are other people out there in the same boat. Let your body rest for a bit to get over it. Took many months for me and it's put a dampener on my studying... does everything happen for a reason?

In reply to Terie, I think that tissue inside the inner ear may be damaged slightly (causing the dizziness) but over the months your brain learns to adjust to the damaged tissue, so everything goes back to "normal".

Hope this helps, I wish everyone luck.


I was diagnosed with VL today. For about a week now I've been feeling lightheaded....like being drunk. I haven't had the full on "spinning" vertigo. I am thankful for that. Today, I started feeling extremely flu-like (body aches). I had this strange pressure/pulling on the back of my head. Before I knew what was wrong with me, I was so scared.....I thought it was a tumor or something. I am relieved that it is only this. However, this isn't great. I didn't realize that the symptoms could last for months, which is what seems to be the case, after reading all of your experiences. I do hope it gets better. It's hard to function sometimes. I'm extremely tired. The lightheadedness makes me nauseous pretty much all day. But not severely. I haven't vomited yet. It's just nice to know that I'm not alone. I had never heard of it before. But it seems like it's effecting a lot of people. I wish you all the best and hope you feel better soon!


Hi, I am just getting over (I hope) my second bout of VL. This bout was not as bad as the first but I couldn't stay awake and spend the first two days in bed dozing on and off. On the 3rd day I went to see my doctor who told me that the medication I was on would be adding to my feelings of fatigue. He prescribed Serc 16 which (fingers crossed) seems to be helping and isn't knocking me out. However, since my first attack I feel as if my balance is not what it was. I went skiing at the beginning of this year, months after my first attack, and had terrible trouble keeping my balance and felt quite frightened at the top of slopes. Has anyone else noticed anything like this?


Does anyone have a cure? Is there any Doctors who are reading this post that can help? I have had this for 3 years. I can not believe what I am reading, It is exact. Everyone I try to tell about my symptoms looks at me like I am crazy.


I lost my hearing suddenly about 3 months ago, woke up the next morning with severe vertigo, etc. It took a few weeks for my balance to come back (thankfully) but my hearing has not (it has improved to a whole 7% of hearing). I have gone through the typical procedures, lab tests, MRI, ENT Specialists, steroids (which caused me to gain 20 lbs in less then two weeks). I am 27 years old and this is so depressing! Is my hearing ever going to come back (I know no one can answer that)???? I wish there was something I can do to help it return but so far it seems like all I can do is wait. I am tired of having to ask everyone around me (at work and at home) to repeat themselves over and over again and I feel like such a complainer when I have to remind them that I do not have hearing in one ear. How come no one has been able to diagnosis what caused my SSHL? I feel really helpless when it comes to this situation-- I really used to take my hearing for granted. This bites. It really really bites!

~Truly Annoyed


IT's no fun,is it guys? My symptoms were more of the same. The suddeness of the onset,on reflection,was incredible. Yes it was in the morning, hardly lifted my head,room spinning VIOLENTLY, "the vertical hold" gone crazy. It has settled down after about 3 weeks but it is there. I am 73. What I wonder most is HOW INFECTIOUS is it ???? I have a friend who's immune system is shot with cancer. Can she pick this up as well? On the lighter side the problem has its compensations. I don't have to own an expensive yacht to feel sea sick. And I don't have to drink a lot of expensive grog to feel and act drunk.

I've had bowel cancer and a brain tumour but this is the most debilitating thing I ever had. Like everything else that life throws at you, you manage somehow. I turn the music up when the tinitis gets too loud for me to hear the sound of the surf through the window at night.

I've given up yachting and flying light aircraft but I think I will take up boxing again. I can duck and weave like a young Mahomed Ali and cling to the canvas like an old pro taking the count for money.

Life was not meant to be easy but it wasn't meant to be glum either. Chins up, grin and bear it, not long to go before the end comes and then....think of all the money you will save on medication.


I noticed an article on this site that mentioned taking Stemetil for inner ear problems, nausea and dizziness but it also mentioned Parkinson like symptoms (shaking etc) My mum took Stemetil very occasionally (c. every 2 years) whenever she had these inner ear problems She has now developed Parkinsons. I noticed several articles on the Net relating Stemetil to Parkinsonism and traced several of the articles back to a researcher at Edinburgh University Medical hospital (now retired). he was convinced that there was a connection in some people with taking Stemetil and developing parkinson like symptoms (check Medical textbooks especially the pharmocopeas). He has campaigned for years to persuade GPs to only prescribe this drug with care. My mum no longer takes Stemetil - she uses less effective drugs which are thought however not to have this side effect. But she's stuck with her Parkinsons which has devastated the quality of her life - I know what she'd sooner suffer from if she had been given the choice! Is there anyone else out there who has Parkinsons who has taken Stemetil?


I would urge anyone with ongoing balance problems (be it menieres, labyrinthitis or vestibular neuronitis) to see a Hearing Therapist through their local medical service. Their expertise is in hearing and balance problems and they can offer guidance and exercises which can help retrain the failing balance organs. They are fantastic and offer the most constructive medical advice I have encountered in the last eight months of illness.


To the person who posted their comments about a Hearing Therapist on Aug. 3rd,I have had the balance problems since March. My GP recommended Physical Therapy exercises. Some are visual, ex. looking at a business card taped to the blank wall and turning your head left and right. Another one is standing in one place with arms crossed over your chest and focusing on a fixed point on the wall for 30 secs. They seem to help a little.

Can you please give me an ex. of the exercises you received. If they are similar, I won't have to find a Hearing Therapist. My insurance is limited. Thank you very much.

Hope all others are doing better.

Ann


HI Guys, this site has brought me less anxiety about my condition. It started 3 weeks ago on holiday in Ireland, I felt a bit 'strange' for a couple of days and them went out of the hotel for a walk. After a few steps I felt like the floor was moving/rocking, like I was on a boat. I made it back to the room feeling incredibly sick and tired. I vomited and felt slightly better. THe dizzyness/rocking motion soon came back (within 5 mins). Anyway to cut a long story short we flew back to the UK after a very short stay in Dublin. I went to the doctor and she diagnosed labryithitus. She gave me Betahistine which didn't seem to do much. About 4 days ago all the symptoms stopped for two days. Then last friday I started to feel the same sensations. I went back to the docs yesterday and he told me to take cinnarizine 3 times a day. I've been worried about this thing and still son't seem to be getting better. I feel weak, heavy and dizzy on and off. Should I demand to see the ENT and get an MRI done? I'm sure the docs are right but I can't help but worry. This is the worse thing I've ever had. Thanks for the stories, they made me feel a little more positive. -Wayne


I am writing in response to Ann's enquiry as to the balance rehabilitation- The type of exercises you get depends on which condition you have, as the causes of vertigo can be very different and therefore need different treatment. My exercises are very specific to my illness(vestibular neuronitis) and the problem areas that remain in my balance. I would urge you to stick to the exercises your GP recommended or press him for further help.


Thank you for the quick response. I will consult my GP further.

Ann


To the person who recommended the Hearing Therapist. I checked with my GP, and he wondered if you meant ENT who I've seen, or an Audiologist.

My insurance co. said they don't have a listing for Hearing Therapist, just the other two above.

The specialists I've seen didn't provide exercises. Only the Physical Therapist did.

Please comment. Thank you.

Ann


Hey all!

Thanks for all of the helpful comments. I was diagnosed with V.L. about three weeks ago and have felt like I have been living on a ship since then. The doctor noticed some fluid in my ears and gave me some medicine to help drain the fluid. Does anyone know if this is common with V.L.?


Hi,

I am a 38 year old female and think I am in the same boat as you guys.

A couple of months ago I had an episode where I was awakened in the early hours by the room spinning violently and the feeling that I was about to be thrown out of bed. I went to my local medical centre the next day who said it was "Benign Positional Vertigo". I had a few days off work because I felt dizzy and fatigued, but made a complete recovery.

Then, a week ago the same thing happened. I went back to the medical centre who said it was the same thing, and gave me the day off work. I went back to work the day after despite still feeling fatigued and a bit off balance, and three days later I had an episode where I thought I was going to pass out. My boss took me to the casualty department of the hospital next door as I could not walk unassissted. I had an elevated heart rate, sweating, shaking and this overwhelming feeling that I was going to die if I let myself succumb to unconciousness. I felt like I was only just hanging onto reality by my fingertips. Anyway, hospitals being what they are, I recovered enough to go home before they saw me.

When I got home my partner took me again to the medical centre who said the attack was most likely caused by the vertigo, but called it Labyritnitis (these terms seem to be used interchangeably) and gave me Stemetil, which seems to have helped. I have been pretty much flat on my back all week because of the feeling of being on a boat when I am upright, and have had another milder near-"faintng" episode. Yet, I have had no nausea.

I relate fully to the feelings of "brain fog", forgetfulness, and fatigue but am also experiencing feelings of depression and anxiety. One minute I am all gung-ho and convinced I will beat it, the next I am convinced that I will never feel normal again (perhaps because of the waxing and waning of this condition - yesterday I thought I was on the road to recovery but last night I did another couple of "victory rolls" in bed).

My blood test showed an elevated white blood cell count so I will assume that what I have is VL. I am having thoughts of getting some echinacea, garlic and vitamin C and treating it as if I am trying to clear a flu virus from my body.

Its kind of confusing because I got a really bad head cold about a month ago and experienced no vertigo whatsoever. What a wierd disease.


I have been suffering from V.L. since march 4 2004. Wound up passing out from the dizziness. Went to a neurologist that found nothing wrong, then finally a month later a ENT diagnosed me with V.L. after doing a ENG and a Audiogram. I have found that Arnica Gel I got from a health store has helped relieve the symtoms. I coated the back of my neck and around my ears and for some reason it helped. Arnica is supposed to help stimulate blood to the area is is put. It does not cure me, I still suffer from V.L. but i have good days and bad days. Days can go by with no symptoms and then I can have a bad day for no reason at all. I have found good amount of sleep and the Arnica Gel,multi B vitamins and Ginsing has helped me considerably. Now I can at least better deal with my bad days.


I wrote about the Hearing Therapist and would like to respond to Ann's comments. I am not sure if you are writing from the US or UK? I am based near London and the Hospital nearby having a 'hearing therapy' clinic- but they are basically involved in balance rehabilitation and they also work with deaf people. Perhaps your 'physical therapist' is the equivalent specialist? It was an ENT consultant (who I saw privately) who recommended I visit the therapist - a practitioner totally separate from an audiologist or ENT. I can email you the details of the Clinic if you wish?

Thanks to Rich for the suggestion about Arnica Gel- I am going to try that!


I too have been diagnosed with a viral infection of the inner ear. It all started about 4 or 5 weeks ago on holiday at the Sidmouth Folk Festival when I suddenly felt like I was walking on sponge cake and looking through somebody elses glasses.I made my way to a shop and sat down, and then managed to get as far as the venue where my daughter was doing a singing workshop. There I collapsed on the floor and was unable to sit or stand, I felt very sick. Paramedics where called, and despite a temporary dip in my blood pressure, could find nothing else wrong with me. I put it down to the heat, drank plenty of water and continued with my holiday. I did feel uncomfortable driving home, but found that chewing gum helped!

Since then, things have gone from bad to worse, I am now experiencing symptoms everyday. I am uncomfortable driving, going out, I feel trapped in my own home, I cant work. I am dizzy, fatigued and stressed out to hell. I am self employed and a single parent. If this situation doesnt improve soon I am terrified to think of what it could mean to me and my family. I am normally an active go getter and now I am suddenly trapped totally debilitated by this illness, with no income and bills to pay. Does anyone know if Beta Histine works, it is what I have been prescribed with. Yours desperatley,

Kate


Kate, I hope you get better soon. There are a few things you can do to help. Somewhere inside your ear some of your tubes are swollen and causing the problems. I have had VL since 3/4/04 and I am not 100%. I am a functioning person, but with good days and bad days. Some people can get over it, some not. 1. Rest when you can. Viral infections need rest to help cure. Make sure you are getting more than 8 hours a night. 2. Do the multivitamin routine with extra doses of good C and multi B. (you can take Ginko and Ginsing I have found they help and also ARNICA Gel put on my neck and around my ears) 3. Drink plenty of water (more than 10 glasses a day) do not allow yourself to get dehydrated in the least bit. I have noticed that makes a difference. 4. Stay away from ANY caffeine or stimulant. They make it worse. 5. Massage around your ears and back neck (gets blood flowing and might help relax you) 6. go to a ENT and have a ENG and a audiogram performed. This will help tell which ear is the one causing the problem. 7. Most ENT doctors will probably prescribe Allegra-d and a Nasal Steroid. Take them religously. 8. if you are still dizzy, take dramamine. A doctor might prescribe Valium. I found I can at least function on half a Dramamine.

Unfortunately, there is no way to take a pill and get over this and if inner ear damage is done it can be there forever. However, it does get better in time. Do not push yourself like any virus infection you must rest. It is okay to constantly move your head in different positions in fact it will help retrain your brain.

I do not know what type of work you do, but a self employed business owner, can you hire help in the short term? or outsource your work? Now might be the time to think out of the box. Who knows, this might help your company grow :-) ( I do hope you get better fast. Some people recover quickly and some don't)

Do not hesitate to email me if you have questions/comments. Having 3 kids a spouse, 2 dogs, was out on disability for a month while the neurologist determined that I did not pass out from any brain disorder and then finding out the insurance companies don't consider VL a debilitating disease to pay for short or long term disability (there must be some way to get that changed, if anyone knows, please let the group know) so having to go back to work and drive a hour and a half one way to work and then work while suffering and then drive home, I can understand how you are feeling.

I am not a doctor so my suggestions are only that however, they help me.

Rich


Thanks to Susy and Rich for suggestions. I am a Special Education Teacher in the US. I've had VL since March 04. The unsteadiness and fatigue still linger. Hope to get back to part time work soon. I'm still working with a Physical Therapist. I'll get in touch with a Hearing Specialist to compare exercises. Good luck to all.

Ann


Thanks Rich, will try to take your advice, bad reaction to beta histine (am allergic to anti histamine ) doc didn't spot it. Managed to make it to the supermarket for 10 mins yesterday.I feel like hell,used to run, camp, cycle, work, do everything to the limit. Right now the garden seems a challenge. Back to docs tommorow,kids back to school.I am getting worse by the day and it is hard to imagine a day when I will even be able to go back outside. Right now I have a system of radiators that guide me around the house and I can walk from one to another. I can't believe that this is happening to me. Thanks for replying, please keep in touch Kate


hello everyone. This is my third posting on here.I was stuck down with labyrinthitis back in april ( 6 months ago).I return and look at this site a few times a week.I have come to the conclusion that most of you are experiencing the off balence/ dizzyness/nausea/vomiting symtoms.When i initially had this illness i was terribly off balence and thought i was going to vomit,I was just getting over feeling lousy with a really bad raw throatwhen i was stuck down with this nasty virus..I also had a loud roaring/buzzing in one ear.Thankfully for me the dizzyness cleared up within one week, but i still have imparred hearing and continuios buzzing in one ear ( tinnitus).Also the glands in my neck on one side of my neck feel enlarged.I am due to see a ear/nose/throat specialist in october , so will post any news i have from that.I 'd like to wish you all a speedy recovery..and kate ..hang on in there..this is a very nasty virus that effects your delicate inner ear,its vital that you rest as much as you can( not easy i know)and eat well to boost your immune system.All the experts will tell you it can take up to 6-8 weeks to recover, but i rather suspect for many people it takes makes longer.I d like to say to ''Rich'' that your advice was very accurate and useful.Good luck to everyone........


Hi,

Has anyone had the sensation of like walking while on a moving boat? I don't really get the spinning sensatings (vertigo). I also mainly only get it while I'm walking, im much better sitting or lying down. Does this sound normal?? Thanks for all the info!! -Wayne


God, it has been a relief to read about others who have been sufferring from this condition; and I thought it was rare! I was diagnosed with VL several months ago and although I havent sufferred nausea I feel as though I am not in touch with reality some days. I have dreadful tightness at the back of my head and neck and feel so lethargic. Also to my partner's despair, I suffer from mood swings, perhaps caused by the persistence of the symptoms. I am now considering cranial sacral therapy and am going to try the Arnica Gel too. Thank you for those suggestions as my GP has been disinterested and unhelpful. I am also suffering from blurred vision and an increase in 'floaters' which the eye hospital has told me is due to my short sightedness, but I cant help wondering if this is symptomatic of VL? Does anyone else suffer problems with sight? My eyes also feel bruised and heavy most of the time. Anyway, take care fellow sufferers. This site has been a real comfort to me! x


Well, here I still am everybody! Had two quite good days this week, but back to square one again today. Had a meeting with my bank manager and spent the whole time hanging on to the chair to stop the room spinning around. As I stabilised in the 'going round' stakes, I suddenly felt as though I was falling forwards! It really was like a bad roller coaster ride. I have now been referred to E.N.T. as an emergency. Did anyone else experience 'good days' and 'bad days', just as I think I am improving, I have a horrid day like today. It doesn't seem to be a smooth recovery curve like any other illness.


wayne , i think you are having the milder symtoms of vertigo.Labyrinthitis can cause anything from feeling slightly off balance to severe room spinning which is often acompanyed by severe vomiting.As it depends on what part of the inner ear is inflamed and how severly. ellie. you said your eyes feel swollen, could your sinuses be playing you up?.I suffer from sinus problems from time to time and i am aware that the face and eye area can feel bruised and tender..... kate .. yes , good and bad days is very common , i can only suggest that you try and lay down as soon as possible when things start to worsen.......any sudden head moment can trigger off an attack.so i would suggest that you try and limit any sudden head movement for a while. hope this helps........


http://www.rnid.org.uk/html/leaflets/dizziness_and_balance_problems.htm

this is a very useful link that you may wish to read


Thanks to your advice, I have been taking max strength Ginko Biloba and Mega Vitamins,avoiding all caffeine, I have actually had two relatively good days in a row, but have been also trying to rest as much as possible. Managed to drive about 6 miles this morning (I am trying to increase my distance each day) I know this may sound pathetic, but that is a huge increase on what I have been able to do for the last three or four weeks. Went to the Supermarket on the way back, and was anticipating the dizzyness, but it didn't come, although I am still very fuggy headed. I am actually cooking my family Sunday Dinner for the first time in a month. I know that it is still a long road, and there will be good and bad days,but I am convinced that the Ginko has made a difference. When I read the leaflet that comes inside the box, it mentions 'increasing blood flow to extremities' which is what it also said in the Beta Histine leaflet. (which I couldn't take as allergic to anti-histamine). I wonder if this is why it seems to be working (fingers crossed). Thanks, Kate


Wow, I’m enlightened by all the posting on this site. Some brought a tear to my eye because I really felt for the individuals involved, Viral Labyrinthitis SUCKS.

On the 11th July this year I was having a lovely BBQ with friends at home in my garden. They all left around 6pm and as I walked them to the front of the house and turned a corner and BOOM, the whole world seem to shift from top right to bottom left like someone and just hit my head with a sledge hammer. The same sort of feeling if you get up to quick but 100x worse. It shook me up pretty bad but I kept quite about the episode until my friends had gone. I told my partner and said I needed to sit down because of what just happened. So we sat quietly and watch TV that evening.

About an hour or so later I started to feel weird, felt like I was no longer in the room but I knew I was... First I thought I was having a panic attack of some sort, then as I stared at the TV it started to move from right to left diagonally... So now I started to panic slightly. I didn't have a clue what was going on, I'm 35 and quite fit. I felt like I was going to pass out, started sweating and was generally worried about what was happening. I told my partner that I was feeling pretty weird and asked him to look at my eyes as by this point everything was moving left to right diagonally really fast. Surely my eyes must be moving but he said I looked ok... But then I stood up and realised I couldn't walk straight and kept falling over. I was now really worried, everything started flashing before me, was I going to die? I lied down at the foot of the stairs and my partner got me a bucket in case I vomited. I couldn't even crawl to the toilet. Moments later I felt sick and then I was violently sick for the next hour. Ok I thought, I know what this is, its really bad food poisoning. The rest of that night was a wash out, I eventually managed to crawl to the couch and sleep until the morning. I felt ok the next morning but was quick weak and tired, as I expected. So I took the day off work and just rested.

The following day I decided to visit the doctor because I was slightly concerned that I started to feel strange again, a sort of 'spaced out' feeling like something was wrong in my brain. When I got to the doctor they checked my blood pressure and checked my vision. She then said I probably had a vertigo attack and proceeded to check my ears and confirmed I had an infection, probably Viral. I assume I picked it up the weak earlier in Ibiza while swimming. She sent me on my way with some 'Stemital'. Up until that point I had no other symptoms but then I started to get a bad throat, slight cold and general flu symptoms. I took the rest of that week off work.

Week two all the flu symptoms had gone and I thought I was on the road to recovery but every time I wanted to do something like drive the car, go to the shop or go to work I started to feel really faint, like I was going to pass out. I was also quite dizzy especially in super markets or places with low ceilings. Certain lighting conditions seem to make things worse. So a week passed and I went back to the doctors.

This time the doctor explained It could take about 3 weeks to recover but it would eventually just go away. Then I started to do my own research and found all my symptoms were those of Viral Labryinthitis. Thank god I had an explanation.

Week four I went back to the doctors and he confirmed I most likely had Viral Labryinthitis and prescribe more "Stemital". This time though I have not taken the course, I'll keep them for emergencies.

Its now 2 months on and I still suffer from the following;

Headaches and migraine Tiredness & Exhaustion "Brain Fog", "Fuzzy Head", "cotton wool head" I cannot concentrate, have trouble with my memory Sensation of about to go dizzy Bright lights like daylight, artificial lights (e.g. supermarkets) cause discomfort Neck pain / stiffness Light headedness like I am about to faint? Sensation of being on a boat. Sensation of being in a room, when you I'm not in a room - virtual reality Being forgetful, unable to think, saying and doing stupid things Falling, falling, falling the feeling of falling Lack of orientation

These symptoms come and go, I can say I have only had 2 good, normal days in the last 2 months. It worries me to think this could go on and on but I'm trying to think positive. I have found that if I keep busy, especially out doors, like gardening I tend to forget about the Fuzzy Head and other things.

I think the only way forward is positive thinking, easier said then done when you can't think straight in the first place. I hope that if you are suffering and have been anxious like me about what's wrong that you can take comfort that you are not loosing it and your not alone. It can be very hard to explain this illness to colleagues and friends, they really can't understand what your going through.

Anyway I wish you all the best and I hope that sharing my experience so far will in some way help with your own situation.


Hi All,

I posted on this board not long ago. I just wanted to say that I am recovering (I think) and have been able to go back to work. I really, really feel for people who ahve had problems for months or years. I still am slightly off balance but feel like I am getting stronger gradually.

An interesting side effect is I now seemed to have developed anxiety attacks. For example, if I go into a a place that makes me feel woozy or uncomfortable, i start to fret that i am about to have an attack in public and will not be able to make it to safety, or be able to get home or will somehow embarrass myself in public. I have to breath deeply and try to get a grip on my feelings, and so far it seems to work. anybody got any advice for this?

Does anybody know the chances of recurrence of Labyrinthitis? Are all the attacks of the same duration and severity?


hello, I`m 24 years old and diagnosed with labyrinthitis 3 weeks ago. Having read posts from other people about it going on for months I`m am more scared than ever.

I was about to got away to celebrate our first wedding anniversary when the weekend before had to cancel the holiday due to coming down with this. That obviously didnt help my mental state, half way through the second week of this an ambalence had to be called out cos I had a reaction to the antibiotics I was put on, they put me on some others which I`ve just finished. My symptoms are much the same as when it all started.

Both ears are really sensitive (bit painful) Slightly dizzy all the time Feeling of water in my ears

I could use some reasurance, the doctors put me on stemitol and said weather the storm...be patient.

I back there tomorrow. Does sitting around make this worse should I try getting on with things? really dont know what to do.


Hello everyone. Unfortunately I find myself in the same boat as all of you. I was diagnosed with VL on 23rd August 2004 and have now had three weeks off work sick. I was working away on my computer and turned to get something behind me, turned back and nearly fell off my chair. I did not have a clue what had happened to me. Luckily my boss is a doctor and he organised an MRI scan the next day which was normal (as I thought I had a brain tumour or something!). Fortunately I did not have the vomiting but felt so, so sick. Then my symptoms got a lot worse and I stayed on the couch for a week.

I felt a lot better last week but on Friday my symptoms returned with a vengeance. It is now Monday and I have booked another appointment with my GP. My symptoms are not quite as bad as they were originally but I feel lousy today, with a really heavy head, tiredness, and a general spaced out feeling. Does anyone have recurring VL? Hope you all feel better soon.


Greg, I suggest trying to move on as normal. I find sitting around can make things worse. I too took Stenitol but found it didn't really work. Today I'm going to start taking Gingko supplements which are suppose to help with the bloodflow to the brain and ears. I've had this VL for 9 weeks now and fear that it will go on for much longer but I'm trying to be as positive as possible. I have a 2 hour flight to look forward to at the end of the month which I'm really nervous about. I also suffer from anxiety attacks now which i never use to before. Anyone got any info on flying with this disorder?


Right, I`ll take your advice Kevin + try to be more active. Purhaps you could keep me posted on how you get on with the Ginko supplements can you take them with Stenitol? (I dont think stenitol doing anything for me either but aint tried coming off it too see if theres any change) I`ve noticed anxiety too when being out and about, but sure thats just caused by sensitive ears + dizzyness.

I`m sure with enough people battling this evil virus between us we will find away though it. Its strangley encouraging hearing people who are in the same boat, and with the way I feel boat is quite an apt word!

I`ve also got slight pressure behind the top of my nose is anyone else getting that? Best way I can describe this is like having had 3-4 pints but with none of the nice feeling that comes with being drunk + super sensitive ears.

Hoping we can all draw a line under this rubbish phase as soon as possible.


Hi Greg, I too had pressure behind the top of my nose, I took Sinutab which really helped. I also contstantly get the 'I've had a few pints' but none of the nice feelings associated. I just had an episode of feeling like my brain was getting bigger with some pain, brought on by a weather front moving in. Thunderstorms can be our worse enemy. Feel like leaving the office and going home to lie down but think I'll try a soldier on, plus I need to go up town and get my Ginko. I'll keep you posted ;-)


Hi Greg, I too had pressure behind the top of my nose, I took Sinutab which really helped. I also contstantly get the 'I've had a few pints' but none of the nice feelings associated. I just had an episode of feeling like my brain was getting bigger with some pain, brought on by a weather front moving in. Thunderstorms can be our worse enemy. Feel like leaving the office and going home to lie down but think I'll try a soldier on, plus I need to go up town and get my Ginko. I'll keep you posted ;-)


Its anybody suffering from a feeling of water in their ears? like you sometimes get having been swimming or in a shower, cos thats one of my symptoms of labyrinthitis and it one that scares me most. I was out drinking the night before I developed + initially thought it was a bad hangover, my big concern is I`ve done perminent damage through drinking (I was very drunk) Or is it just a facet of this virus.

problem I`m finding with dealing with this is theres no real signs of getting better so forever reading into symptoms.


Hi Greg,

I have read on a couple of websites that "alcohol abuse" and smoking are risk factors.I actively sought these sites out because my gut feeling was that alcohol could play a part. I am (was) a binge drinker. I would be healthy during the week, eat right and go to the gym, and then on the weekends turn into Ms Hyde and go out drinking and smoking and staying out late with my my friends. Not any more. If feeling normal means never drinking again, that's a deal I am willing to make. If I'd had an inkling of what this is like...I never would have started!


For the question Marie asked "Does anyone have recurring VL" from what I have heard once you have had it, you are vunerable to it again. I know someone that has been suffering with it for 8 years. Like any other virus it becomes a method of control. Learn to change your lifestyle to control your symtoms. I am interested in knowing if the Arnica has helped others. From what I have read, it also is supposed to help blood flow. I am glad that the advice on the Ginko is helping others. It took me months of symtems before I found out that it helped. Wish someone would have told me. Had a bad day today, forgot my own advice and had 2 cups of coffee. Serves me right.


Hi Nikki, thanks for your responce, how long have you been dealing with this now? Your life style sounds much like mine was, I too went out and binged over weekend, then lived healthy life during week, swimming etc. I for sure am going to tone it all down + give myself more respect (the longer this goes on its more likely I`ll never drink again. The night before getting this I`d drunk too much having not seen a friend for a while. I`m angry with myself for it now, but just gotta look forward and get through this.


greg , yes the virus affects the ears, even leaving one or both permently damaged.i still have hearing loss in one ear, accompanyed by a feeling of fullness and a buzzing sound.Not sure how a heavy drinking binge comes into it thou......it certainly wud nt be the cause of the virus........but if you are suffering from some degree of off balence , i wud nt reccommend getting drunk and adding to the sensation.


Hello again.

Thanks for your advice Rich. I am due to go back to work tomorrow, but have just been signed off for another week. Don't know when this nightmare will end. I am going for some cranial osteopathy tonight as my GP said something about the bones at the top of my neck may be out of line. Will let you know if it helps. I too have suffered with a pressure feeling at the top of my nose which gets worse when bending over, which leads me to think that my sinuses are affected too. I have what feels like a tension headache with straining of my eyes. Does anyone else suffer these symptoms. Also, numbness at the back of my throat. Bye for now.


Hi, My name is Anna. I am a native of Russia, but I live now in the USA. I have had this terrible things VL for more than 30 years on and off. There were long beautiful years without it, but there were long months (seven-nine months at a time) when I was really sick. I think I tried all things in the world to get a relief. My question is about Gingko - What is it, where can you get it, how long should you take it, did it really help to somebody?

Thank you. Anna


Anna, I have had VL for 9 weeks and my main issue now is dizzy spells and 'brain fog'. I have just started taking Gingko supplements and will post my results to this board over the next few days and weeks. Gingko is a natural plant extract and is available at most good drug stores. I hope it works ;-)


Thanks, Kevin. I am absolutely sure, that a natural plant like Gingko won't hurt you anyway. It will definitely increase the strenth of your body and your immune system. I will be waiting for the results of your trial. I wish you all luck. Now, answer to Marie. I have a long history of VL. On my bad days I too have suffered with a pressure feeling at the top of my nose, between the eyes. I think, that when your inner ears are affected, your sinuses are affected too. Who knows what comes first... I have very bad tension types headache with straining of my eyes, even talking in a loud voice. And, yes, I have numbness at the back of my throat, strange pressure coming from the throat to my chest. Actually, in my long history of this desease I had so many different types of very strange, dreadful and scary sensations, even besides dizziness, that it may scare anyone who deels with them for the first time. This is exactly what labyrinthitis produces. I am in a big doubt, that something is wrong with the bones at the top of your neck. Your were diagnosed with VL. I am sure this is absolutely wright from the symtoms, that you described. Do not be scares by these symptoms. Beleive me, for the vast majority of people who were affected by VL it cleared up completely and never came back. I know many of them from Internet chats and even people whom I know personally (I am a very outgoing person). My case is very different from most of the cases of VL. In the past I had had two types of hepatitis (A and B) that quite often hit people in Russia. These severe viruses affected mostly not my liver (it was affected very little), but both of my inner ears. That is why from time to time I have recurrencies of these inner ear problems and all the horrible, sometimes inexplainable symptoms that viitors of this site describe. Still, I had many-many beautiful years completely without these symptoms in my life. And you will get well!!! Good luck. With great understanding of your problems,

Anna


Hi Greg,

To answer your question I have had this 4 or 5 weeks now (or 4 months if you count an earlier bout of BPPV in May). Not long compared to some of these other people, but long enough to be a big wake up call to someone who is normally quite fit and active.

My understanding of alcohol affecting l'itis is that it is a risk factor, not a direct cause. I suppose big drinking binges do compromise the immune system a fair bit, but it's also a toxin and alcohol also attacks the nervous system.

My doctor reccommended I "be more health conscious" in the future and I am going to take her advice, because I NEVER want to go through this again.

I look at it this way: its probably saved my liver (or maybe even my life!).


Thanks Anna for your most interesting comments. I am reassured that the numbness at the back of my throat is a common feature of this horrible virus. I had a great week last week and then it returned on Friday and since then I have not been too good. I'm not dizzy but my head feels as though it does not belong to my body and is very heavy if that makes sense! I had some cranial osteopathy last night which was very relaxing but I am with you on this that I don't think it has helped my VL. I suppose when you are keen to find an end to all of this you will try anything! Thanks once again. Will keep you posted.


wow , this is getting busy here.lol.and nikki , i am so glad for you , (for whatever reason ); that you have quit the binge drinking.Yes , its very much a wake up call, espcially if you are usaully so fit and healthy.This illness whether it viral or baterial, can leave you seriuosly fatigued.

When you do not realise what you are suffering from , its also very scary.

But it will in time resolve its self,everyones just got to rest as much as possibly , and get their immune stystem strong .I wish you all the very best in getting well soon ...


Marie, You explained one of your sensations as: "but my head feels as though it does not belong to my body and is very heavy if that makes sense". It makes a lot of sense to me, because I feel exactly the same! I know how hard to explain this dreadful feeling to others, who did not experience this.

Anna


Day 3 on Gingko supplements, it seems to be helping a bit I think... anyone else taking these? If not I can recommend given them a shot, they won't hurt to give them a go. I would be ineterested to hear other peoples findings. The 'Brain Fog' has subsided slighty, dizziness is not as bad. However I am now aware that the vision out of my right eye, or on the right side of my brain seems slighty out of sync with the vision on my left. Its not blurred vision its like my brain is processing things slighty different on the one side to the other. I hope that makes sense. Anyway I suppose its just the spaced out feeling still. When an illness lasts this long its always hard to distinguish between getting better and getting use to. So i will continue with the supplements and keep you posted.


hello everyone ..hi kev ...yes , i am taking gingko.This is my second day.I have tittinus and a degree of hearing loss due to labyrinthitis. I also decided to do some research on ginkgo biloba and i have copied and pasted some intresting infomation.( you will find it below). I really think it will do no harm to try ginkgo,and if a few more of us took this supplement it would be intresting to swap notes lol.

Ginkgo Biloba 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).


Glad I found this message board. Almost wish I hadn't though... I went down 9/13 with VL (diagnosed at the local ER) and was given meclizine and prednisone to help with the inner ear inflammation and the vertigo. When I asked the doctor "How long will this last?" his response was basically wait and see, could be gone tomorrow (ha ha) could be longer. If the posts on this web site are any indication, longer (weeks and months) seems to be the norm... Or is it just that folks who get over it in a short bit aren't as likely to go searching over the internet about what the hell is wrong...

2 side notes -- I took Ginkgo yesterday on the belief that it could help, and I did have a better evening, actually watched a whole movie (2 hours) when previously I couldn't stand to focus on the TV screen for more than a few minutes, mostly just listen.

Also, regarding the post about the vision in the left and right eyes or visual centers not syncing up, I totally relate. Personal anecdote -- took a few puffs off a clove cigarette (Djarum Special) and for a few blessed moments it was like it all came back together again. Unfortunately short term relief and I don't think more smoking=more relief.

Best advice I've seen is to hang in there. I've already decided that if this lasts longer than 10 days I'm ready to try acupuncture... any advice?


Hi Dianne. Thanks for your words of encouragement.:)

Hi all, I seem to be getting better slllooooowwwwllllyyy. I am taking Gingko too, but am unable to tell if I am getting better because of it or because the old brain is learning to compensate.

It's the fear factor that's getting to me. Everytime I feel a bit woozy, I get terrified that I will have another near-fainting episode like I did at the beginning. And I mean scared - it's almost paralysing. So I have a couple of questions for some of the veterans: when it recurs, how often does it recur? And when it recurs, does it start with a violent episode like most of us seem to experience or is it bascially a return to the off- balance/lightheaded/dizzy symptoms we all seem to have daily?

I am basically terrfied at the thought of "dropping" in the middle of the city, or on the train on my way to work, in a public place and be unable to get myself somewhere "safe".

Being a bit of a worrier to start with, it's the uncertainty of this is what's having the biggest psychological effect on me.


Nikki, I think from what I have read and my experiences is that the major Vertigo attack won't come back. I too have the constant fear of dropping like a fly at the checkout or in the middle of the street. Therfore I try to avoid situations like that or at least have a friend with me that understands the condition. From my experience its just the off-balance/lightheaded/dizzy and foggy brain symptoms that we have to put up with. I'm sure the Gingko is working for me, been taking for 5 days and is making a difference I'm sure. My main fear is flying which I am due to do in 5 days, ~I hate flying at the best of times and this VL isn't gonna make it any easier.


Hello everyone..In answer to your question nikki, i dont think there is any hard fast rule with this virus.Everything varies so much, from the severity of the symtoms ,to the duration of the illness.But i will stick my neck out and say that the longer you go without the reoccurrences, the more likely they will not return.I would try and stay as mobile as possible , but i am lead to believe that any sudden head movement can trigger off an attack .( for example bending down )sorry i cant be more specific ....hope your all having a good weekend.


Ginko is definatley helping me. I am using 'high potency' Ginko, and things have definatley improved. I missed my Ginko for one day and spent the next day feeling really dizzy. Co-incidence? Don't know, I have good days and bad days, but Ginko seems to help.

On the drinking question, hangovers are definately a no no. 1. Dehydration is a very bad idea. 2. Anxiety seems to to be worse if stimulants are taken in excess. Dizzyness is a nightmare when your brain is trying to compensate for the effects of going out for a drink, and your injured inner ear. However, a couple of glasses of red wine at the end of a stressful dizzy day can help to relax. Don't feel guilty. Do try aromatherapy baths etc. DO make sure if you are bathing or showering that you have someone in the house or your mobile phone nearby. Having no balance can be a nightmare. (Just closing my eyes in the shower when I am shampooing my hair will make me fall over!)

Take NO caffeine, I am on Redbush Tea and I find that evan a mug of ordinary tea will send me dizzy.

No late nights. Loads of sleep.

I find that walking (with a companion) really helps. Don't attempt to head out into the countryside on your own though.

Every time you feel dizzy, feel glad, and internalise the folowing mantra 'I'm compensating' that means I will be better even quicker'.

Got a cranial osteopath coming to the house at the end of the month, will report back.

My sanity has been maintained by the contact that I have had with others on this message board, and the advice that I have recieved. We can beat this viscious virus and just have to hold on to positive thoughts.

Thinking of you all, Kate


Hi guys thanks for the answers.

Kevin, I wondered if you had seen this site? http://www.tchain.com/otoneurology/treatment/flying.html It could be helpful.

Diana - I was afraid somebody would say that! The uncertainty of this disorder is the pits.

Kate. I am on a whole cocktail of supplements at the moment and have no idea if they are doing me any good or not, but am too scared to stop: Gingko for dizziness, echinacea and garlic oil for immunine boosting, ditto vit c and b complex. On top of that I also take Glucosamine and fish oil for a knee problem. A real hypochondriac's smorgasboard.

What is the difference between L'itis and Menier's disease? Some sites I have seen seem to use the two terms almost interchangeably.


Hello everyone ....nikki...hey you keep taken those vits etc ,i am a firm believer that they will assist you to get better. as for the diffrence between laby and menieres disease, i would need to re research to give any concrete info , but the two give very similiar symtoms. Kate ..looking forward to your report back..and kev , i am going to take a look at that site now


Hi, all:

I was diagnosed with Labrynthitis 11 years ago and have not had another bout since. I find that by watching for symptoms of ear pain during or after a severe cold or other viral infection and getting treated PROMPTLY has kept me from having another occurance.

I, too, was misdiagnosed with sinusitis, MS and brain tumor before they got it right. Unfortunately, the tests I had to go through were causes of another symptom that kept me bed bound for 2 months. You see, I even had a spinal tap to check for the MS, which later resulted in a leak of my spinal fluid and, on top of the Labrynthitis, I had what the doctors called LP headaches. Being a mother of a 2 year old with and with a useless husband, I was at my wits end. I was admitted to the hospital 2 times, once because my vomiting had been so severe that I was having chest pains (it was actually ulcerating my upper digestive tract) so I even got to experience nitroglycerine. What a trip!! My doctors prescribed the seasickness patches to help me ease my symptoms and Chicken Soup.

Well, after the healing, I have, as I said, been careful to watch for the inner ear infection and have it treated. The reason I found this web site was because I'm now, after 11 years, having tremors of my head and hands/fingers and I was looking for a relationship between Labrynthitis and other nervous disorders. My question is: Has anyone else experienced any other symptoms some time after the original diagnosis?

Just sharing and reading your stories has made me feel less alone. I never knew another person that suffered as I did.

Peace to you all.


hello Fran , thankyou for your input.Crips , dont mention chicken soup i love the stuff and i am very hungry right now.lol.( joke).So sorry to hear of the complications.I cant say i have heard of any connections between labyrinthitis and any nervous disorder.They could be completely unrelated. Are you/have you, getting the tremours checked out??????


Question to Nikki from Anna.

You said: "I have had this 4 or 5 weeks now (or 4 months if you count an earlier bout of BPPV in May)". As I understood, first you had BBPV, and than your symptoms changed and you were diagnosed with labyrinthitis. Could you describe the symptoms of your BBPV and your labs in more detail. Did anything (medication, exersises, plane flight, etc.)provoke your BPPV to change to labs? It is very important to me, becuase I think, that I had the same sequence at least twice in my life - in 1995 and currently. Both times BPPV (benighn positional vertigo) came first and then it changed to inflammation of labyrinth (labyrinthitis) after I did prescribed by my ENT doctor Brandt-Daroff excersises three times a day. It was a big-big mistake! I hate this doctor and myself, for following his stupid advice twice. Because it turned out, that the symptoms of labs were much-much more severe in my case both in 1995 and now. I am back to 6 hours a day work, but still not feeling normal: headaches, disbalance, sensitivity to sounds and vibration. It has been already 10 months since everything started with a bout of BPPV back in November.

Question to other guys: did anyone perform Brandt-Daroff exersises?

My advice is the following - be very-very-very careful with doing any exersises. Remember- your head is your "wounded" organ, because your affected inner ear, or both, are in your head! Your head should get healed very well before you move it vigorously, or use it full strength for working, studying, watching TV, shopping, even partying. All activities of the just mentioned above, are similar to stepping on your broken leg: if your leg has not healed completely, you will break it again and the consequenses can disastrous.

Wish you all luck. Anna


To all of those who feel like there is no hope for this virus, I am greatly discouraged. I truly think that positive thinking is key. I am only 25 years old, with two kids, and I refuse to believe that I will live with this forever. I've had problems with vertigo to begin with, but a couple of weeks later I began to have this fullness in my head and ears. When my doctor immediately told me I had labrynthitis, he shrugged it off as no big deal. What he doesn't realize is how helpless we all feel when it comes to this virus. After horrible headaches and extreme anxiety as if I have a tumor or something, I've realized that the only way to get through it is to talk about it and read what others have to say. We all may have different levels of pain and pressure, but we all know how horrible it is to live with VL. For those who have a flight to go on soon, I would like to tell you that I just recently got home from a two hour flight and don't feel well at all. The good news is that if you keep your mind off of it , you can get through it. Take some Meclazine for the vertigo and maybe some pain medication, and you'll make it just fine. I was very anxious about the plane trip- scared as if my head would pop or ears would burst, but they didn't. My suggestion would be to take a magazine and a pack of gum! I've been taking vitamin c to boost my immune system, and I do believe it helps. I am just so sick of the fatique. My last time to workout was four days ago, and I usually run five miles and lift weights. I don't think I'll have the energy to do that anytime soon. My doctor advised me to treat it like I have the flu- get plenty of rest, drink lots of water, and think good thoughts of recovery. Good luck to everyone who is suffering. I hope and pray that we all recover from this irritating and scary virus very soon.! Deanna


Hi Anna,

That’s terrible that you have such bad symptoms for so long. I was feeling the way you are feeling up until recently, but have improved somewhat. I hope it happens for you soon. I don’t think I would have the fortitude to cope with that for so long. My symptoms have now gone to a stage where I can function, but feel hung over all the time.

To answer your question, I had BPPV back in May. It started in the middle of the night when I rolled over in bed a few times and the room spun around very rapidly. At first I thought I was dreaming it, but then I woke up fully and found that unfortunately I was not. Anyway with that bout, I was given 3 days off work (plus the weekend) and was able to return to work the next Monday.

I recovered fully and went on with life as usual, exercising, working, and yes, partying on the weekend - without a problem. I even had a severe cold a few weeks later with no dizzy effects. I just put the BPPV down to being a one-off occurrence.

Then in August I had another bout. I took a day off work and then went back to work, although I was unbalanced and bit dizzy for the days following. I was quite cocky and confident that I would be right as rain in no time and then 3 days later I had a very bad episode of dizziness at work when I was convinced I was going to pass out, or even die! It was extremely frightening and also humiliating as my bosses had to wheel me out of work in a wheelchair because I didn’t think I could stand up without passing out (I am 5’10” and they are both small women so it probably made a very funny sight).

Anyway the medical centre I went to told me I would be over it in a week and that it was probably the BPPV. I had various visits to the same medical centre over the following days and weeks and always got a different doctor - they all seemed to use the terms BPPV and Labyrinthitis interchangeably to describe it.

I have had blood tests, a CT scan and a Caloric test. The RN who did the Caloric test told me that I had evidence of damage to my left side - a lesion (?) - and that I showed signs of compensation. She said I probably had had a bout of Lab and then a bout of BPPV following it (????) and that’s why I was still dizzy 3-4 weeks later. Up until then I had been doing those Brandt-Daroff exercises for about 2 weeks because they were in an information booklet for BPPV one of the Drs gave me. The RN told me stop doing them because they probably weren’t doing anything. I really think they don’t know what’s going on, but I am going to see a specialist soon and maybe they can be more specific.

When I describe myself as having Lab to you guys, it’s because I have largely self-diagnosed by looking on the internet.

And now I have an inflammation in my good ear from the water from the caloric test not coming out properly!!


hello everyone . i had been reading the last few postings and the only assumption i have come to is , that labyrinthitis presents its self so diffrently from one person to another that it is not always possible to diagnosis it immediatley. when i first came down with this, i had a cold/raw throat then my ears buzzed loudly,( where as some have no cold etc when this strikes them) the next morning when i was waking, i felt giddy and off balance.I felt very nausaeous and everytine i moved my head it worstened.Luck for me this cleared up after 14 days.( where as many suffer for months afterwards. I also still suffer from ear noise and distorted hearing ( this is 6 months after)where as with some people the hearing is not affected at all. i am due to see an ear specialist in a few weeks , so i ll report back .......


hello again everyone. i have copied and pasted some information that is imformative and easily understood.

you will find it below:

The inner ear consists of a system of fluid-filled tubes and sacs called the labyrinth as well as the nerves that connect the labyrinth to the brain. The labyrinth, which rests inside the bone of the skull, contains both an organ devoted to hearing, called the cochlea, and other organs, called the vestibular system, which are devoted to the control of balance and eye movements.

The terms labyrinthitis and neuronitis refer to inflammations of the inner ear or the nerves connecting the inner ear to the brain. The inflammation can be caused by either bacterial or viral infections. If the inflammation affects the cochlea, it will produce disturbances in hearing, such as ear noises (tinnitus) or hearing loss. If the vestibular system is affected, the symptoms will include dizziness and difficulty with vision and/or balance.

Since the whole inner ear is about the size of a dime, many infections affect both the hearing and balance systems and produce both kinds of symptoms. The symptoms can be mild or severe, temporary or permanent, depending on the severity of the infection. Although the symptoms of bacterial and viral infections may be quite similar, the two disorders require very different treatments, and it is therefore important for your doctor to make a proper diagnosis before starting a course of treatment.


Hello everyone. Well a few days have passed since my last posting. I thought I had turned a corner and felt quite good on the weekend and went out with a couple of friends this morning only to find that my symptoms returned. I thought I was going to pass out at one point. Felt very heavy in the head and quite weak. Does anyone else feel worse when trying to get out and about and do normal things? I have realised that I am probably doing to much, will rest all day tomorrow for my sins! Very reassuring to read your comments and to know that at least some people know how I feel.


Still waking up every day with a feeling that this may be gone..no, about 11am on it comes again. Anxiety better now. If I have to live with this, then I am damn well going to learn how. Trying to stay positive, but still angry. Nothing is going to stop me from parenting my children, or running the businesses I have built up from scratch. I keep telling myself that it could be a lot worse, but when I try and 'feed' myself down the street, using the available railings to keep me upright, and I know that a few months ago I strode down the same street in high heels, confident and happy, I can't help feeling a bit robbed. Trying not to dwell there.. had a bad day today. Tommorow will be better.

Miserable old bag,

Kate!


From Anna to Nikki and Marie.

Thank you, Nikki, for your description of your ordeal starting from BPPV and "interchangably" turning to labyrinthitis and maybe back to BPPV again. I really think, that these two problems either go together simultaniously, or change one another in any sequence. Doctors are pretty helpless in distinguishing one from the other.

Marie, I feel exactly the same way as you do while going out. At some points I feel very close to fainting (but never really faint!), heavy on my head, fatigued and because all of that frustrated and dissapointed. Now I really prefer quiet environment and as little people around as possible: only my family and very close friends who are aware of my current condition. You are right, Marie, too much activities around us causes overloading of our brain because the majority of the signals from the outside world are processed through our balance system. You can read about it in scientific papers, in booklets of VEDA - Vestibular Disorders Association.

Anna


Just a quick post regarding progress with Gingko supplements... well for me they seem to be working! It's been 6 days and things are deffinately on the up. I've had a very stressfull 2 days with work which i knew were coming but managed to get through them and actually feel better now than I did last week. I can only put it down to the Gingko and positive thinking. I wouldn't say I'm 100% by any means, probably 84% but when I think I've been as low as 40% for the last 3 months its a great improvement. SO my advise is stay positive and try Gingko! Off on a holiday Friday and travelling by plane, will update how I get on when i get back. Best wishes to you all ;-)


Sorry, my previous posting wasn't very positive. Yes ginko is definately helping. What really ticks me off is that two people today have said to me 'are you sure it's not psycological?'excuse me, six weeks ago, I would have been the first person they would have called to sort out their 'psychological' problems. This is not like that, it is a physical illness. Thats what makes me so cross when V.L. patients are being offered diazepam etc. Anxiety seems to accompany this,but who wouldn't be anxious when the world is pitching and falling around them. The feeling of unreality that accompanies it can make you feel as though you are going nuts. The reason that I can't do supermarkets and 'wide aisles' in the shopping precinct,wide roads, etc. is because my vestibular system is unable to calculate all the visual information. This sends me dizzy, that is worrying for any sane person. Infact, to turn it around, I see that there is a train of thought (gleaned from the net) that some mental illness may be caused by damage to the vestibular system. So, the next person who intimates to you that this could be psycological, tell them to go and get in a lift go up and down to the 5th floor a few times, get out spin round and round, and then when they come back have a sensible conversation...I don't think so.

Kate


Sorry, I didn't mean mental illness could be 'caused' by damage to the vestibular system, but rather, misdiagnosed as mental illness whilst really being damage to the vestibular system......(been a long horrid day, back to my bed now!)


Kate - YES I have that experience too. Every day I will wake up and feel OK self and htne about mid-to-late morning I hit what I call a "trough" which seems to last most of the day improving in the afternoon. Why does this happen? It makes it very hard to make plans.

I laughed out loud at your comments about getting people to spin around etc and then hold a normal conversation. People just cannot understand.

Anna, I have also had a few "almost fainting" moments. I havent worked out if its purely because of the Lab or whether a panic type response is happening.

Its also hard to look at people walking around and going about their business. I get mad at them because they can do it so easily. I have to psche myself up to go the train station and to work, every day. It can seem like Everest sometimes. When I am feeling good, I feel like its very fragile and I am teetering on the edge. I dont know that when and if this goes, I will ever feel safe again.

Have a nice holiday Kevin.


Looking at some of you, guys, I also started to take Gingko Biloba 2x120 mg a day. Guys, what do you think, is it enough? What are your daily doses?

Kevin, have a nice holiday. Your plane flight itself will be OK. I traveled by plane with my labs a couple of times and I did not get worse, than I was while staying at home. Only do not overload yourself with fun and emotions, avoid fatigue, rest and sleep as much as possible (I understand that it is hard to do going on vacation). But remember, that you and only you are in charge of your health.

Anna


Anna, When your Lab recurs, does it start with a violent spinning attack? Or does it come on gradually? Can you tell when it's coming on?

I just checked my referral and the specialist I am being referred to is Neurologist. I thought it would be an ear, nose and throat person. Is this a bad sign?

Hope everyone is feeling better.


Hello everyone.

Nikki, I have the same feeling when my symptoms worsen around mid morning (about now in fact!) and then they get slightly better in the evening. I have no idea why this is. Then there are days when I feel better than others, do you feel this too? I don't think it is odd that you have been referred to a neurologist. If he can't help you then he will refer you onto an ENT consultant.

I am worried about my work. I am now into my 5th week off and I can't see me being back next week. What is the longest anyone has been off for, or am I just being silly?


Hi, everyone.

Nikki, I never had violent attacks of vertigo like Rich described in the very first posted message (with violent spinning and vomiting). It started rather with short episodes of vertigo while rolling over in bed, or looking up, or bending over (BPPV?). It was like a reminder to me, that after long happy months or years of being absolutely 100% symptom free, I can have this disaster back. After the first attack, another one usually comes shortly, then imbalance while walking, bad headaches, anxiety, insomnia, sensitivity to noises, problems with vision, etc. Nikki, just do not think now that you might get reoccurence of labs, or BPPV. Maybe, your desease, that has started in May and is still continuing will leave you finally and never come again. Statistics that I found during my research shows that very rarely labs reoccurs. BPPV comes for the second time in 50% of patients, and for the third time in only 20% of all patients. I do not know whether this statistics is reliable. I am from those unlucky 20%. Acually, even more unlucky - I am now in the middle of the fifth episode of labs/BPPV in my life (I am 52 now, and the first episode happened when I was 19 and it lasted for 6 months).

Hope, you guys are from the more lucky majority.

Nikki, I agree with Marie, that it is not odd that you have been referred to a neurologist. Maybe, otoneurologist (Ear specialist and neurologist in one person) would be even better.

It is maybe strange, or it maybe some reason for it, but I also feel OK in the early morning after a good night sleep. Around lunch I get unsteady and shaky, absolutely exhausted after 6 hours of work, but closer to bedtime usually feel better. Some days are definitely better than others. After a "good" day I am full of hope that the next day will be even better, but nope! It can be a "bad" day after a "good" one. I know that it is a part of our illness.

Marie, do not worry about your work. I was on a short term disability for almost 3 months before I started to work 2 hours a day, then 4 hours, and now 6 hours. You should tell your doctor, that you still cannot work because of your disabling condition. With your inner ear disorder, it is your right to ask for more time out of work.

Anna


Hello. I was reading through some of the posting on this site and did not see anything about chiropractors. I went to one and it seemed to helpfor a while unfortunately I thought I was done with lab and hadn't gone back in a while and am now haveing a recurrence. I have 3 children and not a lot of time so I muddle through and got back on medicine as soon as I felt the simptoms returning, hopefully I will find the time to return to the chiropractor soon. In the meantime I thought I would let you know and maybe it will help you.

Tammy


Wow! 2 not too bad days in a row. Still dizzyness worse at lunchtimes. When I go back to work full time I will go out and find a park for my lunch no matter what the weather is like and eat my pack up alfresco away from colleagues, bright lights and stuffy atmospheres,and spin around on my own hanging on to a park bench!

On the subject of Ginko, I take 120mg of high potency Ginko once a day. I am also now trying Arnica Cream on my neck and behind my ears.The cream is very cool and soothing, and I coat myself before going out. I like to think it helps.

I still seem to be having trouble with my right eye, it seems to be a bit 'lazy' and sometimes takes longer to adjust to the status quo than the left, and can be a little blurry and unfocused so I am off to the opticians to get it checked out, although the doctor has looked at the back of my eyes and not found a problem. Has anyone else had this problem with their eyes?

I am really hoping I am on the mend, although I am still having good and bad days, and do not intend to return to work full time until 1st October. For the last eight weeks, I have been unable to contemplate work at all, and I know that I have still got a long road to travel until I am symptom free. It is a bit scary when people talk about recurrences, but my last episode was when I was 19, and now I am 41, so if I have to wait until I am 63 for the next bout I shall not be disapointed, once every 22 years is just about bearable!

Kate


Hi, everyone,

Tammy, What kind of procedures did your chiropractor perform on you? Did these manipulations really help you with the dizziness or imbalance?

I started taking Ginkgo Biliba 120 mg two times a day (maybe, too much, but it won't hurt, I suppose).

Finally, after having those terrible three months in March-April-May and the whole summer being off balance, with non-stop headaches and sound sensitivity, I started feeling better (knocking on wood). Now I am very slowly approaching my old self - active, outgoing and happy woman. I am not quite there yet, but I hope to have even more progress in the nearest future. I am telling myself - patience, patience, patience...

Wish you all luck,

Anna


Hello everyone. Well yesterday was the worst I have felt for a long time with this virus. Terrible headache all day, as I do most days. I went to the chemist and bought some Ginko and started taking it today. I am pleased to report that I have felt that this has been a great day for me, although I don't know if it is just a coincidence or perhaps the placebo affect! Kate I am having trouble with my eyes but have had difficulty in describing what I have felt and I think you have described it beautifully, although both of my eyes seem to have been giving me trouble.

My ears feel as though they are totally blocked and every time I swallow they "pop" just as if I was on an aeroplane. Does anyone else have these symptoms or am I really going mad?!!

Will keep you posted.


Hello everyone. Well yesterday was the worst I have felt for a long time with this virus. Terrible headache all day, as I do most days. I went to the chemist and bought some Ginko and started taking it today. I am pleased to report that I have felt that this has been a great day for me, although I don't know if it is just a coincidence or perhaps the placebo affect! Kate I am having trouble with my eyes but have had difficulty in describing what I have felt and I think you have described it beautifully, although both of my eyes seem to have been giving me trouble.

My ears feel as though they are totally blocked and every time I swallow they "pop" just as if I was on an aeroplane. Does anyone else have these symptoms or am I really going mad?!!

Will keep you posted.


I've skimmed through most of the writing on your chat, because of the lightheadedness and dizziness I have when I move my head forward/backward.....feeling like the back of my head is in slow motion trying to catch up......I cannot really read it fully.

I got 'hit' with this dizziness and inability to really move around at a normal pace about a week or so ago. I'm used to inner ear infections, as I use ear plugs when I sleep, and they also tend to come along with a shallow cold. However, this time it seemed different, and lasted a long time. I had on hand some Amoxicillan and prescribed it for myself to see if the bacteria could be 'killed' but 'no'...it didn't work. Anyway, I went to a doctor who prescribed Meclizine or antavert for the dizziness. And he also prescribed a beta blocker for my high blood pressure.....which was 168/80. After a few days on both....I was still dizzy with no change.....and we know that the beta blocker Atenolol would work, as it had previously for me. He is now requesting that I get a CAT scan. I think the liklihood of my having a brain tumor to be a small one. It seems like a very expensive hunt for a cure coming on the horizon. What is this thing?????

Do you know of any reason why Meclizine would not work on the dizziness??????


I have now been suffering for just over 9 weeks. This is my second bout of VL, my last was 2 years ago. It started with a strong spinning sensation and now feel like I'm in a boat and sometimes a small spinning feeling. I have luckily not had nausea or vomiting. I have had various medication none of which have been particularly helpful. My CT and MRI scans have been clear. My ENT consultant has sent me for balance retraining with a physiotherapist which I have had for just over a week. This has been very helpful so far. Interestingly the ENT consultant has reccommended not taking medication as this surpresses the labrynth and eventually it can take longer to heal? I am finding the fatigue and anxiety difficult to deal with. I have seen a herbalist and take medicine, but not sure if helping. I'm interested to know if there are any teachers suffering from this; I teach 24 6 year olds and I'm wondering how I will cope when I go back. Take care everyone!


Hi, thought I would let you all know of my experiences with Lab. The virus started in January after having a chest infection over the Xmas period. Have had symptons on & off since! After many fruitless trips to my GP I went to see a ENT consultant privately rather than wait for the NHS.He could find nothing wrong with my ears but suggested that I try BENDROFLUAZIDE.This is usually taken for high blood pressure but alos wrks on fluid retention. It seems that after prolonged lab. excess fluid remains in the inner ear.The tablets help fluid pass quickly through the body and this helps with the 'heavy head'feeling. I take 2.5mg a day and it has definitely helped.I also had a brain scan at the suggestion of the consultant and the results were all clear. I would recommend seeing a consultant privately if you can as it is a lot quicker. I was referred by my GP within a week whereas on the NHS I would have had to wait about 4 months. It usually costs around £100. Worth spending for piece of mind if nothing else! Hope this may help!!!!


Hi, everyone

I hope, everybody is on his, or her way to recovery. I am definitely on my way to recovery. Today, I made my first trip through the town just by myself! I drove my Honda-CRV 15 min to and 15 min from a Chinese doctor. He peformed a treatment with needles all over my body saying that this treatment affects "energy" and "balance" nervous centers. This is my 4th visit to him. I have been visiting him only once a month, because he comes to our small university town only once per month. All my previous visits I had to be taken to the doctor by my husband, or by my son. Now I can do it myself! I do not think, though, that this acupuncture treatment really "treats" my dizziness, or headaches, or imbalance. It just makes me relax. It won't hurt at least. As well as chiropractor's manipulations. They will not hurt,probably. But I doubt very much, that chiropractor could be a real cure (Tammy, excuse me for not beleiving in chiropractors!) If you ask me what I beleive in, and what can be done to overcome your disabling illness, I will answer:

1. A magical pill, or a treatment for labyrithitis is not found or invented yet. 2.Let your illness run its course. Your way to full recovery can be rather long (weeks, most often months). Be prepared for ups and downs on this way. This is how this illness affects your body. 3. At any point of your illness, no matter how bad you feel, try to do your best. If you feel that you can walk without holding to the walls, or to somebody's hand - do it! If you feel that you can drive for a short distance - try to drive! If you feel you can handle a busy and noisy supermarket - try to go there with your friend or relative, first in less busy hours and holding on the shoping cart. 4. Regardless of what I said in the previous item, do not push yourself over the limit. Listen to your body, do not push yourself too hard. Look critically to anybody's advises, or invitations. Nobody (even your loved ones!) knows how you feel, because you can look just fine! 5. Try to be positive and not to lose hope at any point of your ordeal. I know it is very hard, I myself had times of anger, anxiety, depression, very poor sleep. Anyway, seek professional help with these symptoms (they go hand by hand with inner ear disorders). 6. Educate your relatives and friends about your condition. Let them understand, that this is a physical illness. Yes, it is in your head, but not in your mind, like many ignorant people, or even doctors may conclude. It is in your inner ear, or in both of them. 7. You will finally get over your illness with patience, patience and patience....

Anna


Guys,

Sorry for posting my message several times. Something wrong happended to my computer, or server...

[I have removed the extra copies of Anna's comment - Rich]


Hi just joined the gang and been diagnosed with lab. My doctor says he knows how i feel as he has had this himself. i find it very difficult to deal with as i cannot go to work and am not a person who would normally take time off. sleeping patterns are shot to hell as everytime i move during the night i wake up with the dreaded dizzy feeling and therefore find myself falling asleep during the day. some times i fel a lot better then turn my head and i am back to the beginning again. i usually ride a motorcycle but think roundabouts could be fun. im hoping this goes away and doesnt wreck my enjoyment of motorcycling.


Hi everyone.

I am hoping that I have finally turned a corner after six weeks of hell. Feel not so heavy in the head over the last two days and feel as though I have a bit more energy. The only new symptom I have is terrible ringing in both ears which is driving me mad! Does anyone else have this?

Fraser, we all know how awful you are feeling right now, but be assured that it will pass eventually, take plenty of rest and do what your body tells you.


Hi, fellow sufferers,

Fraser, sorry to lean that you joined our company. In the worst period of my labs I also could not sleep at night because of dizziness and anxiety, and was terribly drowsy during the day. Try to take a good sleeping pill at night. You know what worked for me really well - Ambien. It was designed strictly as a sleeping pill, no habituation, you can stop taking it at any time when your sleeping schedule returns to normal. Also, Ambien does not make you drowsy in the morning and during the day. By the way, you are lucky to have that understanding doctor, who knows how terrible your symptoms are. Eventually and gradually you will get rid of all your symptoms. I personally was absolutely, 100%symptom free for twenty years after the first attack of labs, which happened when I was 19. During these years I got married, gave birth to my two children, worked productively, and defended a PhD dissertation in Physics. I moved with my family from Russia to the USA (stressful time!). I drove cars, rode bicycles, went to the gym regularly, traveled on business trips and on vacations all over the world - Europe, Japan, Israel, Mexico, and Caribbean. I went snorkeling and scuba diving. I am describing you all this to emphasize, that you will for sure be normal again! You will enjoy your motorcycling, no doubts.... But not now. Do not do stupid things! Do not go motorcycling when you are even slightly dizzy. It is very dangerous! Wait when your dizziness, or lightheadedness, or imbalance subsides completely. Be patient!

Marie, You said "new symptom I have is terrible ringing in both ears which is driving me mad! Does anyone else have this?" Ringing in the ears which is scientifically called "tinnitus" is very common with labs, or other inner ear disorders. I had it as well. It was more like some annoying, non-stop noise, like a distant band is constantly playing a very rhythmic music in my head. Together with this "noisy head" came a terrible sensitivity to all outside sounds, like lawnmowers in our neighborhood (I hate them!), big trucks driving by, air conditioners, loud voices, etc. Even my own voice echoed to the extent of pain in my poor head. I could only whisper if I wanted to say something. I asked my family to be as quiet as possible; I wore earmuffs almost all the time. I wear them often even now, when I have less sensitivity to sounds, and my "noisy head" is in the past. As I learned from the Internet, this sound sensitivity also has its scientific name "hyperacusis". Nobody offers any treatment neither for tinnitus, nor for hyperacusis. They sometimes go together and subside by themselves very-very slowly. What offends me very much, is that many people around you, even your loving family, think that you are out of your mind a little bit, or at least exaggerating your sufferings. They say: "Look, you have perfectly normal tests of everything, including MRI. You did not loose, or gain any weight. You look just fine! Try to relax, your are stressed, you are overreacting." Doesn't it sound familiar? All of you, probably heard something like this from your family, friends, and even from your doctors (except this rear case of Fraser's doctor, who had labs himself). Being a very experienced sufferer of the inner ear disorder, I am not mad at such kind of notes any more. People want to cheer you up. Most of them have never experienced this hell in their lives (lucky they are!). Many of them have no idea, that our balance system lies in our inner ear, that most signals from the outside world go through our inner ear. If it is infected, or damaged, our brain receives distorted information from the outside world. It makes the poor sufferer dizzy, imbalanced, sound and light sensitive, nauseated, gives him, or her excruciating headaches, tinnitus, anxiety, etc. I try not to be angry, or mad, but try to educate people around me (family, colleagues at work, friends, even my very young family doctor) about my condition. What can I do for myself more? I am a fighter myself, I can handle it. But I need support and understanding. As all of us do.

Keep posting about your troubles, worries, and mostly about your successes.

Anna


Can anyone explain the difference between labrynthitis and meneires disease? It's also worth mentioning that my physiotherapy seems to really be helping! Thanks, Ruth


Hi,everyone Ruth, what kind of physiotherapy are your receiving? It is so good that it is helping you! As I read in your message, you are a teacher of 6 year old kids. It is so important for you to get your physical and mental balance back. You will! About the difference in Menier's desease and labyrinthitis I will write you later(I am at work now).

Anna


Hi All,

I have been deliberately not posting on here because I am trying not to obssess too much (ha!). However, I have been dropping in from time to time to read what people have said.

I would be interested too to know the difference between Meniere's disease and lab. From what I have read on the internet it seems to hit without warning and some people have it so badly that they can just fall over in the street. My understand is that the bouts dont last as long as lab, but it is a lifelong disease that gets worse. Its a bit hard to decipher what's what on the internet because some sites seem to list the same (or similar) symptoms as lab. Whatever the case I hope nobody here has it as it sounds absolutely terrfiying.


Rich,

You appear to have (inadvertently?)started a support group for Lab sufferers. Good for you!

Anna, Marie, so glad you are getting better.

Best wishes to everyone.


Yes, entirely inadvertently. When I posted my short article about labyrinthitis, the only reaction I got from people for months was "I've never heard of that but it sounds horrible." Since then, the discussion here seems to have slowly accelerated to the point at which almost all the comments to Sharp Blue are about the condition (and the rest are spam...). (I sometimes wonder whether people even look at the rest of the site.)

I'm more than happy to host this little support group though - the account has vast quantities of empty storage, and it's obviously helping to put people in touch with helpful information. I wish there had been such a site back in June 2003 - perhaps then it would've all been less scary.


Hi, everyone,

Something about Meniere’s disease vs. labyrinthitis

In 1861 a French physician Prosper Meniere described a condition which now bears his name. He was also the first to correctly attribute the cause to the inner ear. Meniere's disease is a disorder of the inner ear which causes these four classic symptoms:

Vertigo Tinnitus (ringing in the ear) Fullness, or pressure in the ear Fluctuating hearing loss

An acute attack of Meniere's disease results from fluctuating pressure of the endolymph (inner ear fluid). The underlying cause of Meniere's disease is not known. After each acute attack of Meniere's a certain percentage of hearing in the affected ear is lost. Finally, the hearing may be lost completely. Between the acute attacks of Meniere's the patient may suffer with mild to moderate symptoms of imbalance, visual disturbances, tinnitus, etc. Or he, or she can be symptom free between the attacks. Meniere's disease may subside with years. Low salt and sugar diet sometimes helps to reduce the amount and severity of Meniere's attacks. Several specialized medical centers can offer a surgical procedure - perilymph shunting - in order to drain the excess of perilymph fluid in the inner ear. My daughter's colleague who suffered Meniere's underwent such kind of surgery at Mount Sinai Medical center in New York. He has been symptom free from Meniere's since then. So, things are not completely hopeless even for Meniere's sufferers. Labyrinthitis, or inflammation of labyrinth is caused by bacteria, or virus. In the vast majority of cases the hearing is not affected (different from Meniere's disease). The symptoms of labyrinthitis are needless to repeat - you know them by yourselves. As I know so far no surgery can be suggested to long term sufferers of labyrinthitis. I have heard about a guy from Brooklyn, New York. He had labs and BPPV for a year and a half. He was quite impatient, and finally he underwent a surgery called something like “laser cleaning of labyrinth”. He is now much worse, than he was before the surgery. He is going all over the world in order to find any doctor: western, Chinese, whoever, who would improve his condition (as I understood, this poor guy can not walk at all). I always have been convinced, that surgery should not be considered as a possible cure, or even improvement of labyrinthitis, or BPPV symptoms. All these surgeries are still on the experimental level. They can do more harm, than good.

Anna


How would you know if you had meneiers? I assume the 2 things have similar symptoms and therefore how would an ent consultant diagnose one from the other? Is there any difference in the length of attack ie vl 24/7 and meneires shorter minutes/hours but more frequent? Sorry to ask but my doctor wil not give a useful answer.


Hi everyone, still here!

How many weeks is this now? By my count it is week 9! Went to lecture a group of students on Friday, and was so dizzy half way through ,I said' Well, as you have obviously assimulated all the information that I have given you today so well- would you like me to continue, or go away and work on what we have discussed?' As it was a Friday afternoon of course they all agreed! 'Thank God', I said as I crept home in order to sleep all day Saturday. And I mean ALL day Saturday, I was bed ridden and dizzy after a weeks work- Kids did not appreciate this, but worked well together and the house was spotless - so good does come out of bad! The tiredness and anxiety that accompianies this is hell !! However, eight weeks ago, I could not even have crawled into that classroom. So progress , eh? Still going on Ginko, 'emergency' hospital appointment still a week away. Cranial Osteopathy worked to relieve my stress but not my symptoms. Although she left my eyes a lot clearer. Still very fuzzy headed with weird symptoms of 'goose pimples' on my scalp. But surviving.

Hope you all are too,

Kate


Hi, everyone

Kate, sorry to hear you had a bad Saturday. I liked the following part of your message, though: "However, eight weeks ago, I could not even have crawled into that classroom. So progress , eh?" I, myself, felt more off balance, and more sound sensitive yesterday. For the last four weeks, though, I have been having much less headaches and less tingling on my face and arms. I regard this as a good sign (try to stay positive!)

Somebody (no name posted) asked: "Is there any difference in the length of attack ie vl 24/7 and meneires shorter minutes/hours but more frequent? Sorry to ask but my doctor wil not give a useful answer." Acute attacks of Meniere's last from minutes to hours: they can be extremely severe - with violent vertigo, tinnitus, vomiting. The patient can be symptom free in between the attacks, or experience mild dizziness. The attacks are usually months apart. Hearing is impared more and more with every new attack. Labyrinthitis may cause quite severe vertigo, that can last for days. Gradually, it subsides to the point of mild to moderate dizziness, which can persist 24/7. Labs can start with being off balance, or slightly dizzy, without violent vertigo and vomiting. What is quite different from Meniere's, hearing is not affacted in labyrinthitis.

This is my understanding from what I learned about Meniere's (from literature and Internet)and about Labyrinthitis (from all of the above plus my own experience). That is a shame on your doctor who could not give you more or less appropriate answer!

Have a good day and week.

Anna


Thanks Anna for answering my questions, you are a star! The physiotherapy that I am having is also called vestibular rehibilitation. It involves a number of exercises to gain balance confidence as well as to assist the brain to compensate after this virus. The exercises involve eye movements, head movements and general mobility as well as balance. My physiotherapist has devised a programme specifically for my needs which I do 3 times a day. I visit her weekly. I have found this to be of great benefit especially because she is a specialist in this area and is extremely supportive. The physiotherapist has helped me to understand this illness. She asked me to think about what I would do if I injured my leg (rest and some strengthening exercises). She then said to think of my inner ear as a muscle, it is injured and it needs the same treatment (rest and strengthening exercises).I would certainly reccommend looking into physiotherapy . She has also refered me for some therapy to help with my anxiety - I'm happy to try everything! Hope you are having a good day! Best wishes , Ruth


Ruth,

I have been reading your posts almost religously over the past week as I think I am at roughly the same stage of labs as you are. So far I have not tried the vestibular rehabilitation as this sounds really quite promising.

Would you say you are on the road to recovery?

I have heard some promising things about vestibular rehabilitation and judging by your experience it sounds fairly accurate!

Godd Luck All


Hi All,

Anna thanks for clarifying Meniere's vs VL. It's all a bit confusing.

Isnt this disorder fun? Although I am improving slowly, it always seems to find new ways to torment you. Its latest trick is now when I am looking at something close e.g. reading, everything in my peripheral vision moves around.

Sometimes too if I am just sitting still, watching tv or something I get the sensation of swinging around in an arc. I call it a ghost spin, because nothing in my vision changes, and I dont feel sick or anything, but its just a sensation that I am moving (or am about to move) 180 degrees.

I also am now occasionally having dreams about spinning but am unsure if its really happening in my sleep and making me dream about it, or it's just a dream. Its making me afraid to go to sleep.

3 weeks until I see the neurologist, though what he's going to do about it I dont know.


Hi Nikki, and my fellow sufferers,

Nikki I too have had dreams where I start spinning or doing backward summersaults, normally they wake me up. The good news is I just got back from a holiday and had no problem with flying just a bit of anxiety which is normal because I hate flying. Overall I have had a better couple of weeks, the Gingko is deffinately working so I would strongly recommend to everyone. Its been 3 and half months now and life is sort of returning to normal but I worry everytime I get a twinge or slightly dizzy spell. I would say I'm probably 85% towards being normal. I have come to appreciate this is going to be a long drawn out recovery but I will, we will all recover ;-)

This sort of illness makes you value good health and a healthy lifestyle more than ever!


Hi Nicky, I would say that I am on the road to recovery. My dizziness is much better but I still feel extremely tired and i can get anxious about going out. Is anyone else suffering extreme fatigue? For how long? My boyfriend has been an amazing support and the physiotherpist has really helped- you should look into this. The exercises do not take up too much time and i feel they help. I also thik my herbal medicine which has gingko in also helps. Let us know how you are getting on. Ruth


Hi, everyone, Kevin, I am glad, that that you had a good holiday. You still have a way to go towards your full recovery for 100%. This day will come sooner, or later. Keep us informed. Ruth, thank you for the description of your physiotherapy. Actually, physical activity and moving around as much as possible is essential in recovery from an inner ear disorder. Only with repetative movements, your brain learns to read "abnormal" signals from your impaired balance system (labyrinth) as " normal". No wonder, that your physiotherapy works. It should work! You are lucky, that your physiotherapist is so nice and knowlegible. Unfortunately, in our town I do not hope to find someone who understands much in vestibular rehabilitation field. I am taking 120 mg Ginkgo every day, still taking 50 mg of Paxil daily and Ambien at nighttime. Still have headaches and earaches, my balance in not quite good. But I still have hope to recover completely.

Anna


can anyone advise how Gingko helps? Does it supress the dizziness?, Nausea?

What does it do?


Answering to Nicky:

Ginkgo Biloba

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).

__________________________________________

On the liflet attached to the bottle of Ginkgo Biloba it is said, that it improves blood flow to blood vessels of the head and the brain.

Anna


First off, thanks for this website and everyone's comments -- they have provided me with much-needed comfort over the past two months. I am currently in my third month of what appears to be VL or something related to it. It started one morning when I moved to get out of bed and had severe vertigo. I did not do much for the next few days although I was able to get out of bed and move around the house a little. I never threw up but was pretty queasy. Anyway, after a week of feeling strange (and a very bad vertigo bout when I was out by myself with my kids), I went to the doctor who, surprise, surprise said it was vertigo. This was the first week of August.

Since then, my symptoms have included: severe spinning (in the beginning), lightheadedness/spaciness -- especially when trying to concentrate, nausea (but no throwing up), exhaustion, weakness, strange sensations in my face, arms and legs (tingling, partial numbness), equilibirum problems -- feeling like I am on a boat, no headaches but off and on throbbing/pulsating which seems like it comes from the back of my head or my ears or something.

My MRI was normal, the ENT doctor and the neurologist both seemed to think that it was viral.

My immediate question for anyone out there is -- how common are the tingling, numbness symptoms? Does anyone know if this is a typical part of VL or some other inner ear disturbance? It scares me to death when it happens b/c I think that I am going to have a stroke.

Just when I think that I am over this, it pops up again which is really aggravating and stressful -- I want to feel normal again!! I would appreciate any comments -- and I feel for all of you out there, especially the ones that have to go to work -- I'm lucky in that regard b/c I'm home with my kids full-time for now.

Mary


Mary, When I was in the throes of the worst of it I experienced strange sensations in both arms and across my chest and shoulders, a sort of a buzzing feeling, and a sense of weakness. Reaching for something would give me the sensation that my arms werent my own. Watching my own hand grasping something was like watching someone else's and that made my disorientation worse. I wasnt sure if it is a sign of anything sinister either. Hopefully the neurologist should be able to clarify when i go and see him.

Kevin, I'm glad the flying wasnt so bad after all. Hope a restful holiday helped.


Mary,

I also have tingling and parial numbness in my face and hands, which appeared together with dizziness, headaches, earache, and imbalance. When it happened for the first time ten ears ago (I mean tingling and numbness) I was scared to death. My first thought was: "My God! It's multiple sclerosis!" But MRI test ten years ago did not show any signs of a stroke, or multiple sclerosis. Ten years ago, after nine months of suffering from labs, all my symptoms gradually disappeared and there was no any tingling, or numbness left. Right now I am on my way to recovery (I hope so!) from one more bout of labyrinthitis. This time I've been suffering for already 10 months. Tingling and numbness, that was quite noticible even two months ago, now is almost gone. I had MRI 5 months ago, when my symptoms were the worst, but the test came absolutely normal (I expected that, frankly speaking). I chatted on-line with many people who were diagnosed have labs, or other inner ear disorders. The complain of tingling and numbness on top of their heads, in the face area, in arms or even in legs is very typical. Ignorant doctors are not aware of this.

Have a good weekend, everyone.


Anna and Nikki -- Thanks for getting back to me so quickly. I'm relieved to learn that others have experienced the same thing. I've gotten use to the other symptoms but the tingling/numbness worried me more -- so thanks for passing along your experiences. Anna -- glad to hear that you are on your way to recovery from your latest bout.

By the way, you all probably know this by now, but an info. sheet from the ENT's office underlined how important it is to stay well-hydrated when having inner ear problems with healthy fluids like water, milk, low-sugar juices,etc. I think that it has definitely helped me feel better.


Some addition:

You should definitely stay well-hydrated. Also, never skip a meal, do not wait to the point of being really hungry. Eat well-balanced diet more frequently but in smaller portions. From my own experience: when a period between my meals is too long (2.5 or 3 hours for me) I can become really dizzy and nauseated. A little apple, or other fruit between meals does not help to survive. It should be something protein-containing, like a small piece of chicken on bread with a cup of herbal tea, or a slice of cheese on bread with a cup of milk, or something similar. When I was healthy, I never paid attention to how often I ate. If I was really busy, or preoccupied with something I could go without food for hours and hours. With this inner ear disorder I have to be more attantive to myself - otherwise I can get really sick.


Hello everyone. Well I am pleased to report that I can finally see some light at the end of this horrendous tunnel. I have had about five days where I have felt almost "normal", with only minimal funny feeling in my head and I seem to have a bit more energy. Unfortunately the headaches persist and I have quite bad tinnitus. The other strange symptom I have is that every time I swallow, my ears pop, as if I was on a plane. Does anyone else have this? I think I can live with the tinnitus and ear popping as long as I don't ever have the full blown virus, fingers crossed. You all have helped me tremendously with your comments, just knowing that I'm not the only one is very reassuring. I will keep you all posted. Wish you all speedy recoveries.

Marie


Hi Again Everyone,

I posted before, and am finally improving. I had VL since March. I agree the most help was rest and Physical Therapy Rehab exercises. I had this condition 10 years ago, and it also took 8 months to recover.

Have patience and be kind to yourselves. Thanks for all the support.

Ann


Hello Everyone,

I've learned more about VL on this site than any of the doctors I've seen. I'm going on week 10 with this and the depression is setting in. I've been to the nurologist, ENT, Internist and my allergist. I've had the CAT scan and MRI - luckily, all fine. When my vertigo "attacks" come on strong, I fall asleep and have very vivid, often scary dreams. I am now able to wake myself up, but I can't control the intensity of them. I get cold and often have tingling on my lips and tongue just before the "attacks". The fog, loss of appetite and fatigue are rally getting me down. I work full time and I don't look sick, so the people in my office assume I'm on drugs. I am trying Golden Seal to help boost my immune system and B Complex for energy. The helplessness of this disease in numbing. All I want to do is sleep.


Robin, for goodness sake please don't dispair! 8 Weeks ago, I was where you are now. Ignore other people. Take time off and sleep. The best bit of advice I was ever given on this message board was 'think outside of the box'. I am/was self employed, and because I couldn't care if I never worked again at the time, I really ticked off my clients. As a result of this, they were so scared to loose me that I have now been offered a superb 'employed' contract by one of them, and have realised my own worth.

Robin, I got my 'tingling' in my scalp, all the time it felt as though I wanted to tear my hair out, so I don't think this is too unusual. I am still having difficulty sleeping at night , which is exausting. Same thing, 'ill' dreams, fragmented, and I wake frequently.

My 'emergency appointment'(waited since beginning of August!) is coming up at the hospital tommorow, which is so ironic as I have come down with a terrible cold (probably due to my depleted immune system.) I am praying that my ears will not kick off again, but I was so dizzy today at work, I had to hold on to the walls, and feed myself down the corridor to the loo!!

Take advice from this board, I cannot function without Ginko Biloboa, I still have on average two bad days a week. I am trying to time them for the weekend, last Saturday I slept all day, which isn't very fair on my kids.

Things do eventually come right, but after you have been through this, your priorities change. I'm hoping I will become less scared, more compassionate, and and all round better human being! You have to think positive, or you are sunk.

Everyone, all the best. Robin, my Email is on here if you need a shoulder to cry on. Others have done this for me, and it has kept me sane!

Kate


Hi All,

Just thought I'd keep you updated on my progress. Its been 4 months almost and I have finally seen some changes. Towards the end of last week I really thought I'd seen the back of this VL. I think I could say I had 3 really good, almost normal days but alas Sunday afternoon I got really foggy, this lasted well into Monday afternoon at which point I left work went home and fell asleep. My partner gave me a head and neck massage and that really helped, by proper bedtime I felt great. Today is better but still a bit foggy.

This board has been so much help, this is probably the scariest thing I've been through. But like everyone says, Stay Positive!


Hi, everyone,

Robin, do not give up! You will be watching yourself like things will start changing from "very bad" to "not as bad", then to "a little better sometimes", "almost normal sometimes". The improvements will be very, very slow, with "ups" and "downs". And then it will come a great day, when you will be able to admit: I am back to my normal, happy, old self!

It already happened to me four times at different points of my life. But every time after those bad months I got back to that normal, very active, productive and outgoing person, whom everybody knew. Now I am having the fifth bout of this illness (unlucky me!). But I hope to make full recovery some day. I am still feeling like I am drunk, slightly off balance all the time, slightly nauseated, sleepy. All of this will be gone some day.

Everybody, do not give up!


Hi Folks, Here I am again.

After feeling quite good last week (almost my old self in fact), functioning almost normally (with a 'minder'), visiting the gym etc, I seem to have caught something and am back to dizzy days.

It started with a splitting headache that defied panadol, so I was off work for 2 days with that. Went back to work yesterday, but felt out of it and unbalanced all day. Then at lunchtime the newspaper I was reading seemed to start spinning and then I got that old "I'm gonna faint" feeling again. I got that under control and got through the rest of the day; but after a disturbed sleep, bad dreams and dizziness am off work again.

I am so fed up with this. And I'm fed up with drs who cant seem to do much more than write me a certificate for a day off to "just rest". I would settle for a defintive diagnosis for one thing.

My job demands that I get a doctor's certficate for each occasion I am off sick, but every time I go in to the dr they look at me like "what, you again?", and I have to recite the whole list of symptoms again and they just nod and get out their cerificate pad. If I need my rest so much, why dont they just write me a certificate that would cover the whole recovery period instead of 2 days here, 1 day there, and forcing me to repeatedly visit their sugery and sit in the waiting room for an hour in order to see somebody for 5 minutes. Excuse my rant everyone, but I am starting to get very angry with the whole thing.


Nikki,

I have the same very-very angry feelings for the doctors who do not have any scientific understanding of our problem, and just do not have any sympathy for their patients' sufferings.


I found some interesting information on the Internet (see below). At least somebody, somewhere is eager to do something for us! Big step forward! I am going to contact these scientists. Actually, I am ready to become their "guinney pig", for non-invasive implant, of course.

Anna ----------------------------------------------- ___Prosthesis Research

Millions of individuals in the U.S. suffer from dizziness, balance difficulties, and other problems caused by malfunction of the vestibular system within the inner ear. Often such problems are mild and short-lived, but sometimes they are severe and disabling. Physicians and scientists at the Massachusetts Eye and Ear Infirmary are developing devices to stabilize patients who develop severe disabilities.

The long term goal of this project is to develop one or more devices that will re-supply motion information to those who have lost it because of inner ear injury or disease or aging. Our present efforts include two different approaches: research on a balance prosthesis and research on a vestibular implant.Both approaches are briefly summarized in the following paragraphs. Review articles are available to provide more details.

Balance Prosthesis

The vibrotactile prosthesis is a non-invasive vest with tiny vibrating patches that signal when the wearer tilts in that direction, delivering information about body tilt to sensors on the skin. Preliminary results show that patients are more stable when wearing this device. Under controlled, short term laboratory conditions, the device helps the patients sway less and fall less often. Studies are being initiated to test patients wearing the vibrotactile prosthesis for longer periods of time, and under more real life conditions. The project also supports the development of motion sensors for use by other investigators in the research community. This effort is currently funded by a four year grant from the NIH (Principal Investigator, Dr. Conrad Wall). Research articles have been published.

Vestibular Implant

The vestibular implant, which is analogous to the cochlear implant, uses electrical stimulation of the vestibular nerve to replace absent or reduced vestibular function.In a closely related project, we are developing a prosthetic "pacemaker" to help minimize and/or eliminate fluctuating vestibular symptoms and sensations caused by Meniere's Disease. Early progress has been made in the development of prosthetic devices and experimental investigations have begun. A limited amount of human testing has been initiated. We plan to expand our patient testing soon. Funding has previously been provided by the W. M. Keck Foundation (Project Leader, Dr. Conrad Wall; Co-Investigator, Dr. Steven Rauch) and the Whitaker Foundation (Principal Investigator, Dr. Daniel Merfeld). This effort is presently funded by a five year grant from the NIH (Principal Investigator, Dr. Daniel Merfeld; Co-Investigator, Dr. Richard Lewis). Research articles have been published.

Vestibular Research Growth Campaign The Massachusetts Eye and Ear Infirmary has established a fundraising campaign to support vestibular research, including the development of balance aids and vestibular prostheses, as safely and rapidly as possible. Some specific objectives for this campaign include:

Establish an electrophysiology laboratory to better understand which motion signals are sent to the brain and how these signals are used by the brain (estimated cost $1,200,000). Renovate approximately 2000 sq. ft. of space to accelerate the progress of balance device research and development (estimated cost $600,000). Fund eight research fellows (estimated cost $725,000). Establish an endowment to help recruit and retain the best scientists (estimated cost $2,750,000). For more information on how you can support this important campaign please contact:

Melissa Paul Massachusetts Eye and Ear Infirmary Development Office 243 Charles St. Boston, MA 02114 (617)573-4168 or email her at: melissa_paul@meei.harvard.edu


No dounbt we could use something like that here in Australia too!


Hello Everyone,

I am happy, but hesitant to post that after 11 weeks of VL, I think I am beginning to feel a bit better. I want a whole week without any "attacts". The dizziness seems be be worst in the morning. I have found valium seem to help it go away. I take 1/2 of a 5 mg and I feel better. I have been taking multi-vitamins, B-complex and allegra D. I started with a acuputurist last week. I don't know if the illness is just taking it's course or it's helping. I am working on my attitude which always make a difference. I hope to be going back to the gym again soom. My jeans are getting tight. To Anna and Kate Ash, thank you for your words of confort and support.


Hi, everybody!

Robin, your illness is definitely taking its course towards full recovery. Use everything, that works for you now - valium, vitamins, acupuncture. For sure, if you started to think of going back to the gym again soon - you are on the right way! Best wishes to everyone who is fighting.

Anna


I was diagnosed back in May and now 5 months later I am started to cut back on the Meclizine. It helps me mostly through the day and then in the evening I just deal with it. I don't experience dizziness anymore but from time to time I become nauseated and I'm off balance most of the day. Laying down and relaxing seems to help alot and getting enough rest at night. I don't have the headaches anymore and the ear aches come and go but are mostly mild. I feel that I'm on the road to recovery and I try to take it one day at a time. I'm afraid though that I will have another episode in the future but just try not to think about it so I can go on with my life. Good luck to everyone and it won't be long before we are all feeling great again.


Hello, everybody,

Susan, I am exactly where you are now - no more agonizing headaches, very rare and mild earach, no more real dizziness, but still slightly off balance all the time and nauseated sometimes. I was absolutely intolerant to any noises - now I am doing much better, I can even go shopping to a big supermarket like Wal-Mart (it is still quite a challenge, though). I also try not to think of another possible long episode of this illness in the future. Who knows, maybe, it will never come again. And for this time I am looking forward for future productive and happy years without this trouble.

Hold on, everybody! Anna


I had what i thought was a sinus infection, then a bleeding noise. Two weeks later my balance week when i stood up to shut off the lights. I couldnt even sit up with support because i was so off balance. I soon because nausea and dizzy. Things would shift like stairs or the ground would move away from me. It still dose time to time. I feel like im walk on waterbed. Tension heads, heavy head. I feel im getting better but still get nausea. Things bother my eyes and ears. People tell me to speak louder but i cant it too loud to me already. My left ear always feels full. I feel better walking on carpet and grass. The waterbed feeling comes and goes. Its been 9 months seen a neurologist this week. Scared its brain tumor or ms.


Hi, everyone.

Lee, I want to reassure you, who are "Scared its brain tumor or ms"... It is not a brain tumor or multiple sclerosis! I am 100% sure. I had, or sill having absolutely all of those sometimes scary symptoms that you described. I had MRI tests two times during past 10 years and they were negative. No brain tumor, no ms were found. This is your inner ear disorder. Anna


Hey, I was diagnosed with VL and have been suffering it for about almost 9 weeks. Im 15 years old and I have been put on home hospital (where the teacher comes to ur house). I have seen somewhat improvement but im still having constant dizzyness/lightheadedness.It gets worse when I go outside away from the house like in a mall but i think if I get out more it should help. Im just hoping one of these days i will wake up and be symptom free.


Scuba, I found that getting on with thing is the best way forward. Just listen to your body and if it needs to rest, rest! But I strongly suggest trying to move around, walk to the shops etc. The brain needs to be stimulated into recovery. I'm into my 4th month and realise thats its a long, long recovery period but I will, we all will get back to normal.


Hello People,

Well I have been having all sorts of health adventures.

I got a virus about 10 days ago (which knocked out half my workmates!), and now have developed sinusitis. The Dr has got me on antibiotics. And yet more time off work.

I have a question though, I got a dizzy spell today almost as bad as the first one (and didn't my heart pound) is this a normal part of vl or do you think it was because of the sinusitis? I am asking because I am hoping it doesnt mean I am back to square one.

To top everything off, I've just been diagnosed with osteoarthritis in my knee. This could make things difficult in the future if the dizziness decides to come back (or never leave)!

I am going to see the neurologist on Tuesday an am terrifed that he's going to say I have Meneire's disease and will get these attacks of dizziness for the rest of my life. With my current luck in the health department, I'm half conviced it's gonna be bad news.


Hello, everyone,

Scuba, I agree with Kevin, that you should move around and go to different places. Only, do not over stimulate your senses, do not get to the point when you get really tired. Rest, sleep and eat well!

Nikki, I also had trouble with my stomach recently. I think it was food poisoning. My nausea was bad. And guess what. This illness aggravated my dizziness, lightheadedness and imbalance. I was scared that my progress in fighting labyrinthitis had reversed. But as soon as my stomach ailing and nausea diminished, I experienced much less dizziness and felt almost normal. What I want to say, that any additional problem in your body aggravates the symptoms of labyrinthitis. Of course, sinusitis can affect your dizziness. But as soon as it is taken under control - you will feel much better with regards to the labs symptoms.


Thanks Anna,

Have improved somewhat. You advice was, as always, very good.


I've just come across this website, and what people are saying doesn't tie in with the medical sites that say symptoms last a couple of weeks. I was diagnosed 18 months ago and had a week in hospital. It's been a long, slow road and I still have a long way to go. My whole way of life has had to adapt and I get depressed when I realise just how disabled I still am. The main problems are concentration, reading, and I get so disorientated in crowds. On the plus side, I can once more make eye contact when speaking to people, and can drive locally in daylight - we won't even think about driving at night! I still walk into things, over balance and come out with strange words at times, and the beta-histine seems to make this problem with the words worse not better.

However, knowing that I'm not alone, even if my symptoms do seem a bit more severe than others who've written, is a big help. I'm just glad I don't live on my own or I don't know how I'd have managed.


Hi, everyone.

Carolyne. Sorry, that you are suffering for so long. My current bout of labs has been lasting for 11 months already, and the four previous bouts were from 5 to 10 months each (not several weeks at a time like those doctors claim!). It often makes me extremely angry when I read, that it is a matter of several weeks to get rid of labs. What kind of scientists, or medical doctors made this conclusion? What kind of research did they conduct, what kind of statistics did they use?

Sometimes I think, maybe all those people who browse the Internet and chat on sites similar to this one, are just unlucky persons having very lengthy and severe cases. So, I have a question to Rich who started this page and who had a very violent beginning of labs in June 2003:

Question to Rich: Are you absolutely and completely free of any symptoms of labs now? How long did it take you to get rid of them? (Oh, God! I am even hesitant to ask… But I hope you are OK, Rich)

Anna


I think I'm now completely free of symptoms. I get occasional attacks of lightheadedness or feelings of disconnection from reality, but these are infrequent, don't last for very long, and I've had them as long as I can remember. My balance isn't impaired and I have no hearing loss whatsoever.

It took about a month for the symptoms of the labyrinthitis to disappear. About two weeks after the attack started I was able to return to an entirely normal routine (for example, I went for a job interview at about that time; I was feeling quite unsteady on my feet but I got the job). I haven't had any recurrences since.

I think that you're right that there's a selection effect operating in sites like this. I wrote about labyrinthitis because I write about most interesting things that happen to me on my weblog, but most of the other people who've commented are those who've had some reason to seek out support above and beyond that provided by their doctors. The only evidence I have to support this, though, is that one of my colleages recently suffered from labyrinthitis too and his symptoms faded away over two or three weeks.

There are certainly a lot of comments here now: do you think I should close the comments here and make a new blank page for future comments?


Rich, I am happy for you and for that colleague of yours, whose labs symptoms faded away so quickly. So, those doctors are sometimes correct. My son recently found an article about labs where it was said, that the length of this disease is "indefinite". The word "indefinite" sounds scary, but it is not "infinite", on the other hand. We all have hope, guys! Rich, I do not think you should start another page. The information on this page is very valuable. Any other opinions?


I didn't mean that I would remove this page, just that I'd get rid of the comments box and say "Comments continue on page two", where page two was initially empty. It just seems to me that this page is now so long that it's almost too large a file for people to download over and over.


Hi Guys. Glad to report that I have been feeling almost normal (I had forgotten what that felt like!) over the past couple of weeks and plan to return to work next week. I have read this page almost on a daily basis and when I was at my worst I took a lot of comfort from it, particularly from you Anna, so thank you. I agree with you Rich that this page is too long and a page 2 is a good idea, but please keep all the original postings as they will keep people sane through the mayhem that is labrynthitis! I hope you all feel better soon.

Marie


Hello Everyone

Last week was good, this one's not so great. Just when I think I've turned a corner,I have several bad days. Here's my question, is anyone else noticing that as soon as rain comes in the air, the bad days come. The barometric pressure changes seem to be controling my symptoms. I am in my 12th week with this and although I'm better than I was, I am still struggling to concentrate on whatever task I'm doing. I'm still light-headed is most of the time, my appetite is bad and I'm still having the very vivid dreams during the attacks. I wish I could ask any of the four doctors I've been seeing. I really hate this.


Hello, folks

Marie, isn't it great, that you are going back to work! Just take it easy from the beginning.

Robin, my worst enemies were thunderstorms, they are so frequent in April-May-June in Oklahoma. I could predict, when they would come or even when they would go in circles around the place where we live. My headaches would become unbearable before and during the storms, I would become more dizzy and unsteady, than usually. Right before and during storms I had a dreadful burning sensation behind my forehead and nose and a feeling, that I lack air (anxiety?). It was only (!) several months ago. It is much-much better now, although my head still feels more clear on sunny days. My had is really foggy on rainy days. I suppose, your sensitivity to weather and pressure changes will gradually pass with time. Probably, the best way to survive rainy and stormy days is to sleep more (if you can), or just to lie down, close your eys and relax. Try not to be upset with your "downs" because of the weather changes. Rich, probably you are right about how to arrange the page. Do whatever you think would be OK (i.e. possibility to read all the valuable information, and to be able to post messages easily)


Hi People... just to keep you all informed with my progress, I had two really good, normal days at the begining of this week, my first since this VL began. Really thought that that was it... back to my normal self but alas last night I got really dizzy, just felt like I was gonna pass out even when I was lying down. Lasted for a couple of hours, the normal anxiety, racing heart etc. Today I have the usual foggy head, slight imbalance.. I'm hoping that now I have experienced some normality that my brain will really start to adjust. One other thing I have noticed is that my vision in my right eye is blurred during the dizzy sensations, basically all the time apart from the 2 good days. Anyone else experiencing this?


Hi, everybody

I really do not have time now to write a detailed message, but I want to answer Kevin quickly. Kevin, in one of my long episodes with labs/BPPV I had blurred vision on both eyes all the time. It was very annoying, because even reading became a struggle (and I was a college student at that time!). This symptom was the last to disappear. I did not have any problem with blurred vision ever after.


I'm just wondering if any of you are managing to go to work with this condition? I have been unwell for about 14 weeks and I am due to start back on monday, 2 hours a day. I'm very worried about this! Any advice? Thanks


Answering the question: I was out of work for 3.5 months. Started with 2 hous a day, and was very worried like you are. I explained to my boss and my colleagus my condition (unsteadiness, constant headaches, sound sensitivity, etc.). They understood quite well, that even those two hours were a challenge for me from the beginning. I was not pushed to work more than I could (so grateful to my co-workers for the support!). Three weeks later I decided, that probably I could handle 4 hours a day, in a couple, or three more weeks I switched to a 6 hours a day. Now, after about three months of my returning to work, I have normal 8 hours a day. Cannot tell you, that I am back to my old self: still have the same problems, but on much less scale. But I am working! Advise: take it easy, especially from the beginning. Listen to your body. Do not push too hard. All these adaptation processes are very-very slow. But you can do it.

Anna


I got hit with extreme dissyness on Oct. 8th it slowly went away in the three days following that but came back again a week later. I think it's getting better but I can't tell, It seems pointless to go to back to the doctor to have him tell me there's nothing he can do. I feel like I'm going crazy!!! I live with my two teenaged children and I am having trouble coping with everything. I was prescribed Serc for the vertigo but it doesn't seem to do anything. I too get chills, and have "unsettling" dreams. I can't think straight. It feels like all the circuits of my brain are firing in rapid random flashes, nothing makes sense, even loud noises are disturbing. My symptoms don't seem as bad as some people describe here but I'm having problems dealing with this because I have no one to help me. I don't even have anyone to talk to or comfort me.


Hi Everyone:

I found a website created by two labyrinthitis sufferers that I think is very good. The site explains lab. really well, and I found the list of symptoms to be very helpful and reassuring in that I have experienced many of them. For those of you who have not seen it, the site is Labyrinthitis.org.uk. See what you think.

I am near the end of my third month of dealing with this. While I am in better shape than I was two months ago, the symptoms are still here. The most problematic for me are the periods when my brain feels like it is full of cotton. I get completely spacey, lightheaded and feel like I am going to pass out. This happens to me the most in crowds (like at my children's schools or a store), when I am trying to concentrate and talk with someone for more than a few minutes and when I am talking on the phone.

Does anyone have any suggestions on how to deal with these episodes?

Bruno -- Hang in there -- read though this site and check out the one that I mentioned above -- you are not alone and these sites will make you feel better emotionally and also contain good advice from people who have experienced the same thing.

Thanks for everyone's comments and advice -- Mary


Thanks for the advice about work. What sort of job do you do? I am a teacher so it is going to be stressful!


Hi, everyone

Bruno, this is sad, what is happening to you. But, look, you have two teenagers, they are not toddlers! So, they can take some responsibilities: for example cleaning the house, doing dishes, etc. Let them know how you feel. With this illness we usually do not look sick, so it is very important to explain them what kind of symptoms you are experiencing and how it is hard for you to do even simple things. Tell them that you expect them to be understanding and supportive. Of course, your teenagers can not drive to a supermarket for groceries. Think of somebody who can help you with this: a friend, a neibourgh, a church member (if you go to the church). It is absolutely no shame to ask for help, because you are ill and not capable to do many things now. I am sure, that people around will be glad to help you. Teacher, who is going to work for two hours (no name on your post). I am an engineer and a researcher and I am working a full day now. I can imagine, that you will have a hard time from the beginning. I would ask the kids to be quieter, because it is hard for you to stand noise and too much motion around you. Be honest with them about your condition and ask them to be co-operative. That is my understanding on how to handle your situation.

Labyrinthitis.org.uk. is a good website. My son found it for me. I read some of the stories from there. Very informative.

Anna


Further comments should be posted to the second page.