Sunday, September 25, 2011

Meniere’s disease and the burnout question

Whether Meniere’s disease actually burns out after a period of time or not is a common question. Unfortunately like most things dealing with meniere’s there really isn’t a definitive answer. I know that many folks believe that meniere’s runs in stages where the last stage is the burnout; while there may be some truth to that I don’t think that it holds true for everyone. From the numerous comments that I have received over the years it seems that meniere’s may go away for a while but eventually comes back, which I know is very disheartening.
Another thing to consider is what treatments you have pursued to control your meniere’s disease. Maybe starting out with a low salt diet, that helps some folks, or maybe going through the gent injections (which didn’t seem to help me) or even the drastic measure of having surgery, surely all these would somehow change the course of meniere’s.
Peggy also found this information about Meniere’s disease burnout on the web. I’m not sure what the link is.
“Some doctors say that Meniere's "burns itself out," leading patients to erroneously conclude that Meniere's will simply fade away and that they will be "cured." However, "burnout" does not mean this at all. "Burnout" refers to a condition where Meniere's Disease has progressed to the point where it has finally destroyed the entire (or nearly the entire) vestibular function in the affected ear. At the point of burnout, the patient has little or no vestibular function left and the body may or may not compensate in other ways. The vestibular function in the other ear may take over and/or the patient may learn to balance through visual cues (with some degree of difficulty occurring during darkness). However, nothing stops the relentless progression of Meniere's Disease, and it will continue to destroy hearing, produce the sense of fullness, and produce tinnitus -- even in patients who are "stone" deaf (because of Meniere's Disease or otherwise). While some patients reach a rotational vertigo-free, or nearly rotational vertigo-free, state of burnout, burnout is a progression, not a cure, and there is no certainty of any one patient reaching burnout. Not all doctors (and not all patients) believe that "burnout" can happen.”
One also has to wonder what people did many years ago when no one had ever heard about meniere’s let alone any of the treatments of today. I can’t imagine how anyone could deal with the attacks and dizziness without even knowing what was going on. It would be interesting to find out if in later years their meniere’s burned out.
Hopefully with more attention on Meniere’s today there will be breakthrough in treatments that will control this menacing disorder.
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28 comments:

  1. Here is the link for the quote I found, David:

    http://www.menieresinfo.com/start.html#prognosis

    I realized when I found that information that I had the wrong ideas about burnout.

    It's easy to assume from the word "burnout" that Meniere's is done, and you don't have to worry about symptoms any more.

    However, apparently it means that the Meniere's has done all the damage it could do to the physical structure of your inner ear, but your body will continue to react as it tries to compensate for that damage. Not very encouraging.

    What have other people heard from their doctors about this, and what do you think about Meniere's "burnout"? What is the long-term lookout for people who have experienced the worst symptoms?

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  2. Peggy~
    I also figured burn out meant it would just meet a final end..but if nerves can regrow..then why couldn't the vestibular nerve do that too? What would then happen..would the process just continue?
    It's mind boggling. And scary.
    Most times I try not to future trip so I don't add additonal stress, or become depressed.
    I just keep convincing myself that at some point this will end..and enjoy every decent day I might have in the meantime.
    It's all pretty crazy.

    Seriously...anyone who has had long term intractable Menieres and experienced any form of "burn out" please chime in! We need your info.

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  3. This is off topic..but I swear I'm becoming retarded.
    Is anyone else having serious problems with both memory, and their problem solving abilities?
    Not to mention spacing out a lot?
    I've noticed a decline as the years with Menieres have gone on..but it's become terrible in the last 2 months.
    I also often find myself in the middle of a sentence and suddenly the next word I was about to speak is just GONE. I feel so foolish when trying to talk to someone.
    This happened 3 times today and upset me..so I have to ask if anyone else has these issues?

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  4. Hello David,

    Nice to read this article.

    I believe that the so-called burnout does not exist, you and Peggy describe it very well. Here in the Netherlands doctors are very reluctant to act in terms of medicines. I am sometimes somewhat surprised to read what is given to people with Meniere's in America. I only received medication in the early years, but it did not help me at all and for years I get no treatment or help. It is annoying, but I also understand that there is nothing to do, as long as they know so little about the disease.

    Back to topic: I have Meniere's since 1992 and I had indeed calmer periods, but it is almost 20 years later and Meniere's is still going with me day after day. In recent years, the attacks are not as severe as they were but the effect on my body is much larger. I now feel more disabled than in the years of the severe attacks.
    Three years ago, I asked the ENT whether I did something wrong. He said this to me: "It is a process of destruction of the inner ear, it is irreversible. For some people this process may take 4-7 years, for others twice that amount of years, and for some this process does not end. The body compensates as much as possible. I am speaking about unilateral Meniere's, but you have bilateral."

    What annoys me of the regular information, is the story about the burnout. It is nonsense and that information should be changed. I appreciate your article and I hope it contributes to better information that is closer to the truth about Meniere's.
    Thanks you!

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  5. From what I can gather most people I know with menieres are really poorly for a few years or so when it hits, then they get much better. Even though it doesn't dissapear it usually becomes less severe and frequent with longer gaps between, so that a mostly normal life can carry on. I think it's only the severe menieres that's more persistent which is rare.

    If your saying that's it I'm stuck with it like this or worse forever, I'd rather be dead and end my life right now! I'm 24 and had it for about 2 years. I hate it and it ruins my life for months at a time. So what kind of miserable future would I have, absolutely nothing to look forward to!

    I think that this website is good and has a lot of useful information, but people need to be careful about how they portray this illness, it could dampen people's hopes and make then panic/ more depressed! I agree with ali that most people have the more stubborn form on here! It's so important to be positive to get through this.

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  6. The people that I know that have had Menieres for a long time, including myself (27 years) all have had their Meniere's eventually go away, their hearing restored and no vertigo or balance problems. My Meniere's is now back due to an enormous amount of stress, after 14 years of managing it well. Every thing the doctors told me in my 20s, and still tell me, was wrong. Everything my uncle and friend told me was correct. They both had Meniere's and said it went away but will come back after deaths of loved ones, loss of job, even menopause can bring it back. And, that is what happened to me. I was told (and I do believe this) that Meniere's is not cured, it is managed, just like diabetes. If you are able to get your stress under control and lead a healthy lifestyle, you will eventually get it under control. I have no doubt that I will this time around again. I know what the doctors say about burnout, and how you'll be deaf, etc, but they are wrong. Eat a gluten free healthy diet of fruits, vegetables, some proteins (chicken, fish, nuts) and no processed foods (I even make my own salad dressing); reduce stress (this might mean an antidepressant or therapy since it is very difficult to reduce stress once you are having attacks); exercise if you can (my balance is bad but I do what I can); take meds until it is under control (I take diuretic, meclizine, valium). Also, do everything you can to reduce allergies - I have a Hepa air purifier. Keep a food diary. There may be certain foods that cause a buildup in you sinuses or more fluid retention. For me it is wheat. Take your life back and get rid of the hopeless thoughts. Let Meniere's be your barometer to tell you when your life is SPINNING out of control and you need to do something about it or it will keep spinning. I hope I'm not making it sound easy, because it is not. It took me 8 years to get it under control the first time. After getting out of a stressful job and getting a divorce, Meniere's just went away. You have to be a great detective to find out what is causing it for you, physically and emotionally. Meniere's is a big question mark - don't know where it comes from, don't know how to cure it. We are the only ones have those answers.

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    1. I agree with what you are saying that it is a stress related problem, I have one year with it, and I am going through perimedopause, I suffer from anxiety and the mood swings. I exercise and am trying to get of gluten, I feel better when I don't worry. This year we moved to a new city and it was the worst episode I had with boughs of vertigo, I didn't want to move and leaving my oldest son behind was so painful and stressful, my worrying about the future makes my symptoms worse. Thank you for your post I will work hard to control my stress and live a simple life as I can. God bless.

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    2. Hang in there, Anonymous, and try to find ways to reduce and manage your stress. It's not easy to do that, I know. I found yoga and meditation to be helpful, and when things were at their worst, I went to therapy for awhile. If therapy isn't an option, try to find someone in your life who understands, is sympathetic and supportive and will listen. Sharing your worries can make them feel less of a burden.

      Good luck.

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  7. Lauri, I have had the problems you describe with memory and problem solving but I related it to stress, not Menieres.

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  8. hello sue
    great post
    regards
    ali

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  9. SueM, I think what you're referring to is what I think of as remissions. I know of people who have had remissions that last for many years, after an initial diagnosis of Meniere's with drop attacks, hospital stays, the works. That is a different phenomenon than burnout, I'm pretty sure.

    Stress is absolutely a big contributor to the revival of Meniere's symptoms, and unfortunately, it's hard to manage your stress when your Meniere's is very active. It's a bit of a Catch 22. But taking control of your life can help a lot, if only to keep you more positive while you are working your way through a bad patch.

    Elizabeth, don't let the participants on this blog make you panic. Meniere's is very different from patient to patient, and as others have pointed out, the folks on this web site have extreme and intransigent cases, for the most part. Which makes sense, because those are the people who need to talk about it the most, being rather desperate for relief. Your situation could be much better than what you are reading here, so "keep calm and carry on."

    I find the only way to deal with Meniere's is to take care of myself to the best of my ability, do extensive research, see the doctor regularly, and take it all one step at a time.

    I feel lately as if my life is on hold, with the Social Security Disability application in a long waiting pattern and no relief from some nagging symptoms that are hanging on. I'm trying to find ways to change my life to continue to have a fulfilling existence, but it's a heck of a challenge.

    Lauri, I also have memory problems and find myself fumbling for words all the time. I have attributed that to the fact that I spend far more time at home than I like, without many people to talk to or work to keep my brain active. It's hard not to get buried in coping with the disease, and I think that can slow our thinking!

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  10. Oops, I meant one of my comments for Anonymous, not Elisabeth! Sorry...

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  11. I was told when I was diagnosed, that this would eventually burn itself out, it would take years, since I was 60 when I had my first attack, I figure, I will never make it to burn out. I know someone that has suffered with this for 30 years, his has gotten better and less severe over the years, but can still have an attack. So I think in some form, once you have Meniere's you will always have it. What is so hard for me to understand, that something different seems to trigger Meniere's but once you have it everyone has the same symptoms and experiences, a few differences. And the treatments are so varied and different. I know the weather changes really affect everyone, so have a safe and try to enjoy the beautiful fall weather that is coming.

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  12. Peggy, I did get off of the subject quite a bit. Yes, I had a long remission. However, my uncle is 95 years old and has had Menieres most of his life. For most of that time he has been in remission with flare-ups of MD during stressful times. It never burned out - by either definition.
    Oh, and Lauri, I can't believe I forgot to tell you this but you might want to get your electrolytes checked if you're taking a diuretic. I ended up in the hospital after a 12 hour vertigo attack last month. I was losing conscienceness and didn't know where I was. The doctors said I was dehydrated and my electrolytes were all off from the diuretic I was taking, along with avoiding salt. Leading up to that attack, I experienced alot of confusion.

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  13. SueM, I understand. My brother-in-law is my poster child for how totally inconsistent Meniere's is -- he's been in remission for more than a decade after a couple of drop attacks that put him in the hospital. He's deaf in one ear now, but he doesn't take any medication and has no symptoms that I know about.

    And I'm beginning to think "burn-out" is just as variable as everything else about Meniere's: Some experience it, some don't. *sigh*

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  14. I have had Menieres for almost seven years. I have increased my fluid intake for another medical reason. I seem to be improving with my menieres. I have followed all the treatments and am continuing them. I also believe it can retrigger itself. I keep down salt to a healthy degree and keep off caffeine. I am on a suitable diuretic and also on some Valium. I have Serc and stemitil on hand. I also have a good friend I can call in an emergency. I do the reserch and am a member of the nationion body of the menieres association. Maria mariagl@bigpond.com

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  15. I have had menieres since I was 19 (im now 58) the first attack was very scary I had been using a steam iron and suddenly the room was spining and I couldnt stop being sick ..after that my attacks mostly started in the mornings sometimes two or three a week sometimes with two or three weeks in between ..then controlled for a while with stemetil (or maybe a remission) but if I stopped the stemetil they returned ..then the stemetil stopped working and I had an op ..decompression of the sac in my inner ear..this along with stemetil controlled the attacks for a number of years..but in my 40's after a very stressful marriage break up my menieres returned with very severe attacks and instant drop attacks my hearing had gone by this time and strangely whenever I tried to do any ironing (with a steam iron) I would get a drop attack ..luckily it was when I had put the iron down but I often wondered if it was the steam from the iron or the motion of ironing that helped bring on an attack.
    After several hospital admissions following prolonged attacks and vomiting I had a Labrintectomy in 1998 and this has stopped the attacks.. so I dont know about burn out but they did become more severe and progressed to drop attacks (but I had remissions in between) for me the two surgeries were life savers.

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  16. Never wrote here before, not sure this thread is active?
    I am in what you call a burning out state, according to my doctor: I do not have severe drop attacks (never had actually), and I rarely get dizzy. But I have continuous tinnitus, ear fullness and loss of hearing. I also have balance issues that verge from uncomfortable to very bad. Sometimes the balance seems to be almost normal for a few days/weeks, but imbalance always come back, and the balanced periods seem to be lessening :( This has been going on for 17 months now, so if it is an attack, it is an extremely long one... My doc says my balance organ is destroying itself and my body is trying to compensate. However as I have not reached a steady state, compensation is difficult. So I take serc and diuretics and hope for the best...

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  17. All the threads are active as long as someone contributes, Karin. I have similar symptoms still, 1.5 years after the surgery that cut my left vestibular nerve. But I also have daily dizziness, almost continually. Like you, my balance issues come and go, as does the tinnitus, and my hearing in the bad ear is almost gone.

    I'm not sure there is such a thing as a steady state. There seems to be some kind of fluctuation that varies with the weather, my state of mind, what I eat, and so on. Unfortunately, I'm beginning to believe that if I do reach a steady state, it will be a plateau that I don't like much. But I keep trying to get to a better place.

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  18. I'm so glad I found this thread. I'm 28 and have also been suffering from what I believe is Meniere's since January 2011. My doctor says he's not convinced it Meniere though and I'm not sure why. I have tinnitus, varying hearing loss, vertigo and balance issues. There have been a few times they went away for a while, recently for several months, I thought I was healed, and now it's back. I'm taking oral and nasal allergy meds, lipoflavonoid, and diazide. I try to do low sodium and low caffeine. I think I'm going to try the gluten free diet and see if that helps. Is there anything else that you all have found that helps?

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  19. I'm so glad I found this thread. I'm 28 and have also been suffering from what I believe is Meniere's since January 2011. My doctor says he's not convinced it Meniere though and I'm not sure why. I have tinnitus, varying hearing loss, vertigo and balance issues. There have been a few times they went away for a while, recently for several months, I thought I was healed, and now it's back. I'm taking oral and nasal allergy meds, lipoflavonoid, and diazide. I try to do low sodium and low caffeine. I think I'm going to try the gluten free diet and see if that helps. Is there anything else that you all have found that helps?

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  20. I'm so glad I found this thread. I am 28 and have also been suffering from what I believe is meniere's disease since Jan 2011. My ENT is still not convince that it's meniere's for some reason, but I have tinnitus, vertigo, fullness in my ear, varying hearing loss, and balance issues. It's gone away a few times, recently for several months, but now it's back again. I'm taking lipoflavanoid, diazide, oral and nasal allergy meds, and am on a low sodium low caffeine diet. I'm going to try the gluten free diet and see if that helps. I'm also thinking about cutting out dairy because that seems to affect my sinuses a lot. Any other advice or things you have found to help? God bless you all, I am praying for healing and strength through this trial for myself and anyone else suffering from Meniere's.

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  21. Hi Rachel,
    You seemed to be doing alot of the same things that most folks do with meniere's and thats good.
    Remember it is always a good idea to get a second opinion from another doctor especially with something like meniere's disease.
    stay in touch
    and let us know how are doing
    David

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  22. Hi All,
    I'm soo GLAD I found this link, since i've been searching for MD info. I'm 43 & have suffered the most in recent years & STRESS is the main trigger i've discovered. I'm quite sharp & articulate normally but MD renders me the opposite & is EXTREMELY frustrating because people judge me & make me feel worse over something that i've no control. I've tried so many remedies & nothing seems to work other than just trying to manage stress & rest as often as possible, which makes me feel imprisoned in my own home & body. I'm a natural optimist so i'll ride out the episodes & pray. But these last bouts have made me take my HEALTH much more serious & i'm now on a weight loss journey & overall a complete Healthy lifestyle overhall...I Pray for the MD population, but more for a Cure. God speed all. tc

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  23. Good thread. I recently saw my consultant (who is a national-level specialist here in the UK) and he mentioned burnout. This was in the context of me asking him if he would diagnose my current odd mix of symptoms as Meniere's (to which his answer was yes, knowing my history). The Meniere's has burned out in my right ear and the problems I have are kind of the residual effects of it. I think it's like a fire that has burned out - the violence has gone out of it but the embers are something to be wary of!

    This is definitely different from remission. I have been through the stages of the disease and out the other side, whereas several people I have spoken to have had just a couple of attacks and then stopped spontaneously for many years.

    The consultant previously told me that many former sufferers when asked say they are fine, but when pressed will admit that actually they are not symptom-free but are just extremely pleased to have put the grosser symptoms behind them, and are fine relative to how bad they felt before.

    By the way, I agree with Elisabeth in that even after burnout I feel more disabled than I did when having big attacks. There are not the same peaks and troughs and that is good, but it means one is living everyday with the permanent damage caused to hearing, balance and also the tinnitus. Elimination of stress is my main strategy.

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    1. hello jeff
      your post is interesting
      the fact that it never really goes away, but the big episodes become under control.
      it is very much like a volcano that stops erupting, but like you say the ember will always live, hence your never really 100% normal again.
      regards
      ali

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  24. Hi Jeff,
    I certainly agree that meniere's seems to go in stages. Although I am grateful that the extreme attacks that I had the first few years are over, I still have to live with the bad hearing, tinnitus and the balance issues as well (which can be very difficult at times!)
    thanks for the comment
    David

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  25. Oh, god, Jeff, you have hit the nail right on the head. It never does go away entirely, and burnout is almost worse than having attacks and then remissions.

    When my Meniere's was active, I would have an attack and then be in remission for many months or even years. But then, after the year of daily or more frequent attacks and the surgery that stopped THAT, I found that the burnout phase was almost worse.

    I now deal with mild to moderate dizziness every day, as well as permanent hearing loss in one ear and quite noticeable balance impairment. This means I get exhausted by simply moving around to pursue a relatively normal life. I won't be climbing any mountains, but it feels like I climb a small one every day.

    Like you, I strive to control stress, as one good way to stay on an even keel. And I try to adhere to a healthy diet and get some exercise to minimize the symptoms that are left. And I hope like hell that my right ear never gets the idea to have Meniere's of its own.

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