Sunday, March 29, 2009

Fatigue and Meniere's disease

I know that right after a major attack of Meniere’s disease I am exhausted. The major attacks usually last about 4 hours from beginning to end. Probably the main thing that causes fatigue is the nausea that occurs. During an attack I am probably nauseated the majority of the time, throwing up everything that is on my stomach at the time. After all that I am very dehydrated.

Since most of my big attacks end up in a ride to the emergency room an IV is given to me. But even that only helps a little.

I also sweat profusely when an attack occurs especially when it is a bad attack. This is probably another reason that I’m exhausted.

But it also seems that since I have had Meniere’s disease my energy level is also lower. I do have sleep apnea which certainly has an effect on my energy but the MD also affects it.

Of course the last contributing factor to my fatigue is the medicine I take for MD. Antivert and valium (low dosage) both tire me out as well.

43 comments:

  1. Dear fellow sufferer,

    I have been able to abort the onset of vertigo 60% of the time by taking droperidol drops sublingually when I feel that an attack might be starting soon. If your ENT has not heard of this therapy, shoot me an email and I will give you my ENT's number, so your physician can consult him. (FYI - This sublingual preparation needs to be compounded by a pharmacist, so I would suggest calling your pharmacy to check that they do compounding.)

    Droperidol can abort the vertigo, but I will still have nausea. Meclizine (Antivert) does help, but I'm still fairly incapacitated.

    I recently got a prescription for ondansetron (Zofran), which I have yet to try. It is the most effective anti-emetic Rx. Insurance will most likely not cover it for Meniere's though, but it's worth it if it works.

    I would love to try a tryptan anti-migraine drug when I feel an attack coming, but my ENT is not as adventurous as me and has not prescribed one.

    Hope this helps,
    Chris

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    1. Dear Chris:

      I've had two drop attacks and tinnitusm, roaring in the ears and both of them feeling full of water from time to time. That is gone for a long time. That's it.

      A year has gone by and I had one weird feeling of being very heavy. My legs could hardly hold me up. But in a few seconds it was gone. Just like the drop attack, as I stood up from the crashes to the floor, I was perfectly normal after this odd extreme weakness in the legs and feeling heavy, as I did when I had the drop attack.

      How does one feel an attack coming on? My doctor says my feeling of heaviness or very weak legs 'could be anything,' and just passed it off.

      I don't have to see him anymore because I've apparently got a mild case. I assume Menieres comes in all shapes and sizes?

      Anyway, I can get no information about how one can feel an 'attack coming on,'
      and I really need this information when I think about driving. Do I or don't I?

      Thank you.

      Isadora

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    2. I have had MD for over 25 years. The past few years, I have had exactly what you describe...my legs become weak and heavy and I must sit down or drop to the floor, sometimes in a store. It passes within a minute or so. I think it's related to MD but what do we know? We are just the Patients!

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    3. OK, after ten years with this nuisance, I will tell you why you are exhausted. Your eyes are moving quickly back and forth, its astygmia I believe its called. The only help is exercises for the eyes and ears. If anyone is interested I will share the ones that work. The eyes moving quickly exhaust you and they offset the ear fluids

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  2. thanks Chris,
    I'll ask about droperidol drops. I don't think that I have heard about them before
    thanks again
    David

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  3. I'm a long time sufferer, Thanks for your blog. May I ask why you go to the emergency room for an attack? It seems to me a difficult trip for not much help. What do they do for you that you cannot have at home?

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  4. My attacks in the past have been very severe to the point that I couldn't hardly communicate with anyone. I also have a family history of heart disease so I just want to be sure that it isn't a heart attack.
    thanks for the comment

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  5. My doc did an ENG and gave me Droperidol drops to take 3+ times a day for a month afterwards. My nausea and headaches have been less severe however it has not helped the spin factor. My vertigo is mild by comparison but is constant and consistent. Meclizine didn't work. Currently I'm on clarinex in the morning and Valium and Elavil at night. Any suggestions on getting back to baseline would be appreciated.

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  6. I wish I could help but I'm not a doctor. The best thing that I can suggest is to get another doctor's opinion
    David

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  7. My doc recently gave me a script for the droperidol. Am glad to hear it is effective for you. It has been very difficult to find a pharmacy that could compound it due to low demand but I finally did in Houston near the Texas Medical Center. Was told it is often easier near a large medical center because they are used to working with docs who ask for the not everyday. It is not covered by my insurance. However if it is helpful the $65 cost is well worth it.

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  8. Thanks for the comment. It is too bad that the droperidol isn't covered by insurance.
    David

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  9. My father and mother both suffer from this disease. My father was just recently prescribed Droperidol with his last visit to his ENT Doc...I was wondering if its just a trial drug or has this medication been proven to cure this disease? Taking a tranquilizer is pretty extreme.

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  10. From what I understand this drug is pretty powerful but it doesn't cure the meniere's.
    thanks for the comment
    David

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  11. Well my dad started taking these drops and they seem to make him worse...today really hit me that my dad is really sick and it really scared me...he was in the kitchen getting something to eat and the next thing i knew i heard a loud sound and my dad yelling for my help. It really scared me..and I feel so useless because I cant help him...I dont know what to do. Has this ever happened to you?

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  12. I've never taken droperidol, but if I had that can of reaction I would get medical help as soon as I could.
    I'm not a doctor but that doesn't sound very good
    David

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  13. Can anyone comment on if there will ever be a cure for this? I take droperidol whenever the attack is about to occur and it somehow subsidizes on occassions.

    Will we ever be able to live a normal life?

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  14. I wish I knew. Hopefully research will find out what causes this and what can be done about it.
    David

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  15. This is depressing me. I experienced my first vertigo attack last month which lasted for a week. I couldn't even hold water down, and was finally admitted to the hospital. I've since experienced 3 minor attacks, and have reverted back to taking Betaserc. I honestly thought the first attack was just an isolated incident and would never happen again. The devastating thing is seeing so many other people living with this nightmare, and there not being any cure. David, thank you for this blog, it is very informative and helpful.

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  16. It seems that with meniere's you are never truly done with it. Attacks come out of the blue and may last a few moments or days.
    Let us know how the betaserc is doing.
    good luck and stay in touch
    David

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  17. I had my second heavy attack a couple of months ago after a 35 year hiatus. A walk during heavy winds seems to have triggered the first attack. But the second one came out of no where and lasted nearly 2 weeks. I was put on the antivert but it made me so sleepy that I couldn't function. I started with another attack just this week but I took 1/2 of an antivert each night and the other half the next morning and so far the attack has been mild with no nausea. My menieres diagnosis was made 35 years ago but I wasn't given any real information on it at that time. I am nearly 60 years old and I certainly don't want to spend my retirement wobbling around like a drunk so hopefully they will find a cure soon.

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  18. Sorry to hear about your recent attacks, I know it must have been rough being sick for 2 weeks.
    The antivert tires me out too, I think that it is considered a sedative. It does seem to help though.
    I hope that someone finds an answer to meniere's disease.
    thanks for the comment and stay in touch
    David

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  19. For about 5 onths I have been receiving treatment for vertigo/bppv from a dr of physical therapy. I will see audiology and and ENT next month for an initial consult. How do u feel right before an attack? I feel giddy and quite off. Then I get sick and all I can do is lay in the dark. Often I put ice/cold on my wrist to quell the nausea. I dont throw up. Im exhausted afterwards. I notice that visually busy places make me exhausted as well

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  20. I am suffering from menier's since january, 2006. For years i take vertin which destroyed my digestive system but to no avail for menier's. i can not move out or go to my work of my own and have to take a cheffuer driven vehicel. Twice i took three doses of steriod dexamethazone with little help which lasted 1-2 months.

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  21. Violet, I don't know if it's common for people with BPPV to throw up, but I know it didn't work that way for me.

    Before a Meniere's attack I would feel dizzy for days or even a week or two. I would have difficulty walking a straight line. As I got closer to an attack, it would look and feel as if the world around me was moving; at times, it looked as if the trees and houses around me were jumping up and down and felt as if I was on an amusement park ride, even if I was sitting still. That was right before I threw up. Afterward, I would be exhausted for hours, or days.

    Visually busy places make me very dizzy and exhausted, too. I have a lot of trouble now with train stations and airports, for that reason. Too much activity and visual stimuli, coupled with stress.

    Good luck with the visit to audiology and the ENT. I hope they can help you.

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  22. I was successful with NO episodes for over two years with the John of Ohio regime (vitamins and supplements). However just recently (I believe triggered by allergies), I began having horrible tinnitus, aural fullness and some balance issues/spinning. My old attacks would bring on severe vertigo.....Has anyone been on the John of Ohio regime and had it stop working? Not sure what to do. PMF

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  23. PMF - Have you seen an allergist? I was told that allergies can have a big impact, and if you are thorough in treating your allergies properly, you might be able to cut down on the Meniere's symptoms.

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  24. I am currently taking allergy shots - 4 kinds a week. Hopefully it will help. Have been using droperidol for some time now. Was told by my ENT to use if I feel nausea coming on. I use a few drops and then again if needed. It really helps the nausea. I do the routine therapy for the others systems for my bilateral MD and get the symptons mentioned by others each-spinning, off balance, hearing fluctuations, fatigue etc. But the droperidol does help the nausea. I also use it upon his advise when I fly since I get air sickness. It does help with that as well. But finding a compounding pharmacist who can fill it can be a challenge. Not all compounding pharmacies do it. I have been told by some because of the low demand for some of the ingredients.

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  25. thanks for the info on droperidol. I am glad that it is working for you. I imagine that it would be tough to get.
    stay in touch and let us know how you are doing
    David

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  26. zofran stops the nausea immediately. I take cocculus compositum every day to stave off an attack. It's OTC, made by the German Heel company. VertigoHeel on script. I take Ativan every day for panic attacks. This is the most horrible illness that has ever happened to me - totally without warning and uncontrollable. Ann

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  27. Hi Ann,
    I'm glad that the vertigo heel is working for you.
    thanks for commenting and stay in touch
    David

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  28. I have had vertigo attacks infrequently for about 30 years but recently they began to happen more often, like every two months or so. This prompted me to go to the Dr who sent me to an ENT specialist. After doing many tests she concluded that I have menier's disease. I am 70 years old. I have noticed that I tend to have an attack when I get overly tired. Has anyone else noticed this? Also when I have an attack my blood pressure, which is usually very good, goes sky high and then after the vertigo leaves it goes back to normal. I also get sweats and nausea to the point of throwing up and sometimes the shakes. The vertigo lasts for 5/6 hours.Thanks for any info you can give me.

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    1. Hi Anonymous, welcome to the club. Yes, I have to have about 8-10 hours of sleep or I have a "bad" day. I also go to be early so I don't get overly tired at night. This seems to help the next day.
      Sorry your afflicted with this. Made it to 70 though.
      Do you have the awful tinnitus?

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    2. hello anon
      what a club!
      any chance i can cancel the membership :)
      ali

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    3. I also found that my bp jumps 30+ points right before an attack. I never would have noticed, except that I had my bp taken at an ENT appointment and then had an attack about 10 minutes later. Since then, I've used a home blood pressure cuff when I feel an attack building to confirm the pattern.

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    4. Nope Ali, it's for life. Membership is exclusive. Must be dizzy and vomit and poop and have noises in our heads! It's a glamorous affliction! Not all clubs have body fluids flying! :)

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    5. That is right! LOL. Ali, you should be honored we let you in!!!

      Just kidding. It really is a club nobody wants to join, and everyone would almost kill to get out of it. Thank goodness we have each other for information, support, and the odd flight of humor. ;-)

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  29. Not sure about the blood pressure specifically, but in general these are unfortunately quite typical Meniere's symptoms. Tiredness/stress are definitely triggers so best avoided, and also try to eliminate stimulants and salt from your diet (you should have been told this by the doctor anyway). Many of us have found that over a period of time the intensity of the attacks lessens considerably, although they may happen more frequently. Fatigue seems to be an ongoing problem, however, so if you can slow the pace of your lifestyle that will probably lessen the chance of an attack and make the symptoms easier to accommodate.

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  30. This thread just made me wonder if anyone has seen a jump in recent years in the number of Meniere's cases. It seems to me that jobs, and life in general, have become much, much more stressful in the past decade or two, and it would be interesting to know whether there was a corresponding increase in the number of Meniere's patients or frequency of attacks. But I doubt anyone has been tracking it in an official way.

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  31. I haven't written for a while, but still find the comments very interesting. Writing this, I feel a bit self-centered, but I just wonder.

    I keep wondering how I lucked out. I have been diagnosed with Menieres because two years ago, I had two drop attacks which is a huge attack of Vertigo where a person, fully concious, just drops to the floor. If not hurt, they can just get up and forget it. Which is what I did. I've never had another drop attack.

    I used to have pressure in my right ear. My one big attack was that pressure, tinnitus, brief distortion of sound, occasional sweats and sleeping more, hearing the sound of wind. Oh yes, some hearing loss, but I can hear anything I need to.

    So why aren't I bothered more? My doctor said it must be a mild case and dismissed me as a patient and I felt there was no need to see him as well.

    The most marked condition I have is Tinnitus which goes up and down but it doesn't bother me. I may never have a another drop attack. That's the only thing that interferes with my life as I don't want to drive and possibly hurt someone else.

    Has anyone else had such an easy time with Menieres? I'm just curious.

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    1. hello anon
      if i was in your position, i would take the signs very seriously and stick to a very good diet (menieres diet: low salt no stimulants etc). keep to a good exercise plan and do not smoke.
      i had menieres on and off for years but like you it was not very disabling. in retrospect if i had done the aforementioned, i dont think i would have got it so bad.
      regards
      ali

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  32. The disease is chronic and progressive and varies from person to person. What you are experiencing now may not be what is in the future....but I don't know that. None of us knows whats in store for us. I don't mean to be a downer.....just stating the facts.

    Hindsight....I wish some doctor would have recommended allergy therapy for me in the beginning. That did not happen until recently when I went completely bilateral. Even if you are doing reasonably well now, if you have Meniere's as a diagnosis, in my opinion, you should consider preparing for the future and do everything now in your power to keep yourself healthy....or get healthy....if you smoke/quit, exercise, loose weight, reduce stress etc. Prepare yourself financially. So if things do go bad, you can look back and say you tried.

    After 2 decades, I thought I had it all figured out...then it just took me down out of nowhere. I was the sickest I had ever been. Bilateral was a the new game.

    I hope you continue to have mild symptoms!!

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  33. Thank you both for your comments. It's nice to have a 'mild case' of Menieres and I'm not going to fall apart if I have another drop attack or something. I've been lucky, so I'll take the 'mild' time I'm having and let it go at that. If it should get worse.

    I do so appareciate that you took the time to write. Sometimes with a mild case, no one is interested.

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    1. I was diagnosed over 30 years ago and at that time the medical world seemed to know nothing. It's a little better today. Betahistine was recently prescribed and a low tyramine diet. It seemed to help until recently. Now the attacks are back and frequent. I agree that stress and exhaustion are triggers. There is no cure I've been told. And it does seem to spontaneously go away for months at a time. Mine started up again in early July and continues. I take a water pill daily too. One thing that seems to stop it is Prednisone but that is not good to take for any length of time.
      Always keep chewable Dramamine near you. It will save you from throwing up. You get ill from motion sickness.
      Thanks for reading.

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