Sunday, January 29, 2012

Meniere’s, hearing loss and MAV

In the past I have written about Meniere’s disease and migraines (MAV) and I have received comments regarding them also. Most of them of the folks that have commented had the migraines before the Meniere’s disease. And over half of Meniere’s sufferers have experienced migraines. There seems to be quite the connection between the 2 ailments. In the past week I received an email from someone who also had migraines with he thought was Meniere’s disease.

This is from Dave…

I have been following your page for a while and am seeking some information.

I became ill in July with what appeared to be Labyrinthitis with flare ups that were like Meniere’s attacks. I however did not feel back to normal between attacks and was very ill constantly for 18 weeks. During this time I have 2 very big attacks which have sent me TOTALLY deaf in my right ear and left me quite off balance. My last big attack left me in hospital for 5 days. I had constant rotational nystagmus for 4 days straight. During this time, I could not even sit up in bed, let alone feed myself. I could not walk at all unaided. It also took me 3 weeks after this to learn how to walk mostly straight and unaided again :(

I was told that what I had experienced was "100 times worse than Meniere’s" and that I do not have Meniere’s. I was Dx with MAV.

A lot does not make sense though. I have fluctuating aural fullness. Constant tinnitus in the dead ear, Varying amounts of motion sickness and am constantly unsteady on my feet.

The thing that really surprised me was losing his hearing completely in his bad ear. I don’t think that I have read about anyone who has Meniere’s losing all their hearing in one ear. I also don’t understand how his doctor could say that he didn’t have Meniere’s disease because his symptoms sound a lot like Meniere’s.

I would love to hear your comments on this.



  1. Thanks or posting this up Dave :)
    Just to clarify for those reading this thread.
    The two specialists that I saw (one a leading Menieres expert and the other a world leading neuro-otologist) said they felt I do not have menieres because:

    1. They had never seen such a severe and sustained attack last for 4 days leaving someone with such severe balance problems
    2. The Menieres expert said he has never seen anyone totally lose their hearing and be left with a 'dead ear' in only 4 months
    3. I have a very extensive family Hx of migraine and suffer severe motion sickness
    4. I have never fully recovered between attacks. My vertigo symptoms have been present 24/7 to a varying degree since I first got ill in July.
    Since seeing them, I have stopped the low salt diet and Diazide which didn't do anything. I can eat as much salt as I like without a problem. I have also stopped the Serc high dose (3 x 16mg tablets 3 times a day).

    I do however have quite a bit of pressure sensitivity when i sneeze or blow my nose.

    I have spoken with others with MAV who complain of daily aural fullness and pressure sensitivity. Others with MAV have also experienced very severe vertigo attacks that have landed them in hospital.

    What separates me from other MAV suffers is the total hearing loss (except one person who lost all their hearing over 6 months, but regained it after a very strict allergen diet).

    To be honest i am at a total loss to what is going on. I appear to be atypical for both MAV and MM.
    My attacks have stopped since I was put on high dose verapamil, cinnarizine and pizotifen, however have they stopped because of this, or have I just gone into some sort of remission? No one knows.

    All comments are greatly appreciated! :)

  2. Hi, I am totally deaf now. I had a severe vertigo attacked about 7 months ago and during that night of the attacked , I lost my hearing entirely. My left ear was poor of hearing from my younger days. When I want for radiation therapy, I lost my hearing in my left ear entirely. I was only able to hear from my right ear. I suffered 5 years of nasal congestion after my radiation therapy for nasal pharyngeal cancer treatment. Then, one night, during the vertigo attacked, I lost my right ear hearing. I am now totally deaf. I had no vertigo attacked since. I was given Serc 2x16 a day.
    I decided to go for acupuncture and after 5 sessions, my nasal congestion improved and more under control. I hope to get my hearing back. I am 52 years old this year and I am a lake consultant. Life is more difficult being a disable.
    Thanks. Ng Kok Hong, Malaysia.

  3. Hi ..Firstly what a shocking experience for you ..I have had Menieres since I was 19.. I am now 58 and my first attack was pretty dreadful and scary resulting in several hours of vertigo and vomiting with some hearing loss.. this was preceeded by fullness in my dodgy ear..but I felt better between attacks initially..

    I was prescribed Stemetil tablets 3x a day and these helped me for a while but the attacks became more frequent always with extreme vomiting/vertigo where I would be unable to move.. usually starting in the mornings soon after getting up lasting 3 or 4 hours at a time leaving me tired and unbalanced for the rest of the day.. I also had tinnitus from the first attack.

    I would sometimes get a break of a few weeks or months in the early days but they always returned.. until I was 26 and I had an operation to "decompress a sac" in the inner ear ..this helped me a lot for many years my hearing was pretty much gone by then and my balance wasnt great (when I turned over in bed the room would spin for a few seconds) but it stopped the severe attacks until I was about 45 and under severe stress.

    This time the attacks were similar to yours extremely severe with constant vomiting I would be admitted to hospital put on a drip and pumped with various tablets and injections these attacks were lasting sometimes 3 or 4 days with contant eye movements which apparently fascinated the trainee doctors who dont get the chance to witness this very often.. After 5 weeks of being in and out of hospital and drop attacks where I would one minute be upright the next my head would have to be on the floor with no warning (I couldnt leave the house) they with my full agreement performed a Labrinthectomy this has for me been a success ..Also my mother had severe migraines so perhaps there is a connection. I do hope you have success in a true diagnosis and some kind of intervention that will work for you ..Good to hear you are having these top experts taking care of you.

  4. Hi to you both :)
    Thank you for contributing your stories to this thread, it is greatly appreciated :)
    Ng Kok Hong, i am very sorry to hear that you are now totally deaf :( Are you able to get a cochlear implant?

    Mel, the last part of your story sounds similar to mine. I too had Doctors fascinated with my nystagmus and i gave permission for them to film it. It was such a horrible and scary experience.
    How long ago did you have your Lab done? I assume you initially had severe nystagmus post op until your brain compensated?

    I have been ok for 13 weeks, but have had a bit of an upset this week with increased vertigo to the point where i couldn't go to work. There is a developing cyclone (hurricane / typhoon) very close to our shore, so i am thinking this may have something to do with my increase in vertigo given all the stories i have read with others getting more vertigo due to weather changes.

  5. I'd be very curious to know whether anyone has had nystagmus that simply went on and on, even after the labyrinthectomy. I had the surgery a little more than a year ago, and I still have chronic low-level nystagmus around the clock. It simply won't go away, and my doctor couldn't figure out how to resolve it. Now I'm trying to figure out what the next step, if any, might be to resolve this. It makes me dizzy 24/7. :(

  6. That's interesting Peggy. Do you know any other people that have had the Lab? How is their vision?

  7. Taavinen, I know another woman who had a similar surgery, but I don't think she's had vision issues. I should send her an email and ask. Her surgery was a nerve section, which preserved the hearing she still had in that ear. The labyrinthectomy is simpler and more straightforward, because it doesn't try to avoid destroying the hearing apparatus (my hearing in that ear was mostly gone already).

    Meanwhile, I'm sort of hoping someone else on this blog who's had the laby surgery might have gone through the same thing.

    By the way, I'm SO sorry about your experience... I understand the frustration of feeling like you are the exception to all the rules. I hope you find some answers soon.

  8. hello
    i recently read the following:

    vestibular neurectomy may be a prefered surgical option which can cure vertigo and preserve hearing.

    Vestibular neurectomy involves the discrete sectioning of the nerve of balance near where it comes out of the brain. The hearing portion of the nerve is thus preserved. Ninety to 95 percent of vestibular neurectomies will result in cure of vertigo.

    has anyone heard of this op, sounds interesting, sounds very heavy though.

  9. Ali, that's the surgery I mentioned above. It's a little more complex than a labyrinthectomy and carries similar risks. And it's not guaranteed to preserve hearing, since some people do lose some hearing.

    This is the surgery my friend had, and it seems to have worked for her, although her balance isn't quite perfect now. She is able to work, and she says from time to time she has feelings that are similar to what she used to have before an attack of vertigo, but she never gets the full attacks any more.

    Oddly, she lost all the hearing in the affected ear within a year of the surgery, so she has told me she wishes she had gone for the laby instead. She had a terrible post-operative experience, with weeks of physical therapy to learn how to walk all over again. She says her balance was THAT bad after the operation.

    That's what she experienced, but it seems that every person's Meniere's journey is different.

  10. How long do people have Menieres before their balance is affected 24/7? I know many people with MAV (my current Dx) have this problem.

    My balance has been off since the day i got ill. EVERY day i am off balance, ALL the time. It varies in intensity. Today happens to be a bad day for me and i have to consciously walk as i keep leaning to one side. It feels like you are walking drunk but without the alcohol

  11. Hi Taavinen I had my Labrinthectomy in 1999.. when I woke from the op I was dizzy and sick for a couple of hours but not so severe as in a full blown attack and no nystagmus.. and that was it.. I gradually regained my walking balance (as after this op you only have balance on one side) but the brain is an amazing thing and compensates through feel (of where your feet are on solid ground) and sight ..touch..Two days after the op I was walking up and down the ward unaided and my self and daughter would go walk about around the other floors in the hospital so that when I went home after a week I was fully mobile and continued by walking a bit more each day..
    I had the op just over 12 years ago and my balance is slightly affected in that if I go into a room with uneven/sloping floors I am slightly aware and if I look quickly from left to right when I am walking along I will sometimes need to take a side step to balance but that is only very minor things compared to the terrible attacks I was having..
    That must be so awful for you to be off balance/dizzy all the time..
    I was really pleased with my op at age 26 to decompress a sac as this helped a lot to reduce the attacks in severity for a number of years. Then when they returned at 44 with awful severity .. drop attacks and vertigo/vomiting almost constant I had the Lab. I am so glad I did.

  12. Thanks Mel :)
    One thing i have noticed is i have pressure sensitivity. When i blow my nose, laugh hard or do anything that is similar to a valsalva i get a brief spin. Does anyone else get this?

  13. Yes Taavinen I used to get this towards the ear constantly felt full ..under pressure even though I was on diuretics (ferusomide ..I think) and If I sneezed it would give me a brief spin sensation ..also when I turned over in bed I would get a brief spin..which occasionally would turn into a full blown attack. I do hope you get some relief soon.

  14. Thanks again Mel. I have had people with MAV experience the same pressure sensitivity as this. Who knows??!!
    I am glad to hear that you are doing better these days :)

  15. Thank you Taavinen .. also I believe there could be a family link between Menieres and Migraines .. My mother suffered regularly with severe migraines and had to lie in a dark room and would be sick.. then gradually feel better over a few hours.. so maybe this could be a genetic connection. So little is really known about this condition ..what causes it etc..More research could be very helpful.

  16. I have suffered from Migraines since I was 11 years old which left me in bed for 1-3 days. Then in 1994 I was diagnosed with Menieres in my right ear. All went well with minor attacks until 2004 and I had 3 months of non stop attacks only to be told I was imagining it and I did not have MD. So my husband, after another 2 months of me flat on the bathroom floor, took me to see a specialist in Sydney who done a series of tests. I was told it was definately MD and that the hearing was almost gone. He said I could rough out the last stage "burnt out or 3rd" for who knows how much longer or he could try and end it surgically. So I went in for a Endolymphatic Sac Removal which was very successful and life was great for 2 years and I had an attack!
    We went back to see him and more tests were done including balance tests and I was diagnosed with Menieres in my left ear as well. And so it starts again. If I get the feeling a Migraine is coming I can have a good chance of a MD episode and a bad episode always leads to a mild migraine afterwards. Like most of the people I have met who are bilateral I am now resigned to the fact my hearing will be greatly depleted before it has had it's way.
    I know that in my family there is a long history of Menieres and Migraines, as well as Diabetes.I just hope that the genetic link dies out with me and no more of my family suffers from this unfair disease.
    Hopefully an answer is not too far away on how to stop/control or even cure MD. That would be the miracle I am always praying for:)