Sunday, February 5, 2012

Mysteries of Meniere’s disease

As you can imagine I have read a lot about Meniere’s disease over the years and the more I read makes this disorder even more of a mystery to me. Wide ranging symptoms that are hard to explain and treatments that seem to be hit or miss adds to the enigma of Meniere’s. Although there is research going on many questions are left unanswered, even the basic question such as why does it occur and what can possible cure this malady.

The comment that inspired me for this post came from Peggy …

My ear/nose/throat specialist has thrown up her hands after treating me for two years.

I called three days ago to say the prism lenses aren't really helping me, and I'm still dizzy on a daily basis, and I asked what she would suggest. Her only suggestion was that I consider going to see another doctor in Manhattan, who was one of her teachers/mentors in medical school.”

I can certainly understand the amount of frustration that Peggy has over this situation. You work with a doctor, follow their instructions and then when things don’t work out they send you on to someone else. Of course this doesn’t happen with every doctor but it does happen enough. Unfortunately with Meniere’s disease this probably occurs more often because this inner ear disorder is so baffling and it isn’t curable only treatable (at times).

We can only hope and pray that the near future brings a better understanding and more ways to control and even cure Meniere’s disease.

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  1. hello david
    my view on menieres is that we all have an issue with something in the ear (specifically the middle/inner ear), but were we all differ is the secondary problems that make it worse. hence why there is such varied ways to treat it.
    its a funny world as with eyes they have learnt so much and there is so much technology, whereas ears it seems they are still in the stone ages:)
    its such an unfortunate illness to have, but on a daily basis i am grateful also as i know there are so many worse ilnesses to have.
    regards and love

  2. Ali, It's no small irony (in light of your statement that the current medical understanding of the inner ear is stuck in the 'stone' age) that the inner ear is encased in the 'petrous' portion of the temporal bone. What does 'petrous' mean?

    Etymology: L, petra, rock
    resembling a rock or stone.

    Cheers and strength to all,

  3. David, I'm honored you picked up my comment for your topic this week.

    Although I do feel somewhat discouraged, I want to be clear that I don't blame my doctor at all. She really did everything she could, tried every treatment I have ever seen in my research, and I believe her when she says she's given my case a lot of thought.

    I imagine that a lot of the doctors who treat Meniere's patients must find this disease almost as frustrating as the sufferers do. But they must reach a point where they simply can't think of anything else.

    I'm not sure what my next step will be. I'd like to find another doctor in my area who might have some more ideas, but I am very reluctant to start going from doctor to doctor to doctor... for one thing, I'm not all that mobile or independent. It's a quandary.

    Perhaps I will take a rest, tweak my diet, start exercising, and come back to this idea in a couple of weeks.

  4. This must be so frustrating for you Peggy.. things are done a little differently here in the UK ..we firstly see our GP who then refers us to an ENT department of a hospital of our choice ..there we see a consultant ENT specialist who decides on all the initial tests that are carried out.. and we return to him/her to be told his verdict and suggests treatment..but usually follow up apointments are often with one of the other consultants in the ENT department who can consultant with any of the others in this field or refer you back to the "top" consultant if they get stuck.. but when (in my case) any sugery is suggested It was the top consultant that carried it out both times... this ability to discuss and refer amongnst themselves although at times frustrating that you dont always see the same or "top" consultant does give the opportunity for different and newer ideas to be suggested..
    As for eye problems a few years after my Labrinthectomy I was finding night vision difficult ..and this didnt help my balance ..I was stunned when I went for my eye test to be told I had cataracts in both eyes (my father had these) I had worn glasses since the age of 11 and needed them or contact lenses to be able to see clearly at all times..
    This time an eye consultant at our prestigious Morefields eye hospital in London was carrying out trials in replacing the lens that was removed with multi focal lenses ..after the op I no longer need glasses or contacts at all ..I consider myself extremely lucky to get these and still marvel at waking in the night and being able to see the clock.. I cant praise the NHS enough..they gave me back my life after serious vertigo/vomiting and drop attacks by performing the Labrinthectomy and now I have better sight then I had at 11..

  5. Mel, that's very interesting. I think it's possible my doctor did consult with some others in her field, including her mentor from medical school, but I didn't have the benefit of a kind of diagnostic committee, which is what your system almost sounds like to me. I'm a big fan of doctors working together and sharing information and bouncing ideas off one another. I don't think that happens enough in the U.S. As a former writer and editor, I believe in the benefits of many brains working with each other to come up with more and better ideas.

  6. It is very frustrating that this whole thing is a complete mistery. I have been doing well since my last shunt surgery back in September, just the occasional pressure and really as ringing, but no major episodes thank God! What brought me some comfort was that I had the Vallium at an arms length if I needed it. I am however a few weeks pregnant with our second baby. We are thrilled, but also scared about what would happen if I had an episode right now. That kind of medication is not good for me to take right now. I just hope that my Dr.'s won't give up on me and we can come up with different solutions if something should happen.

  7. Hi Tara ..during both my pregnancies I was taking Stemetil night and morning this helped me get through the first pregnancy with only mild vertigo ..when this baby was 2 years..the vertigo and vomiting became much worse and the op that was suggested was to decompress a sac in the inner ear.. for me this kept the severe attacks at bay for many years with just mild vertigo sensations from time to time..I was advised to continue the Stemetil and 3 months after the sac surgery I was expecting my second baby..
    These "babies" are now in their early 30's but were "perfect" in spite of the fact I had to take Stemetil.. I hope you have a wonderful pregnancy and birth.

  8. I got wind of something interesting this week... I posted a question on a web site for an ophthalmologist in Colorado about my nystagmus and the prism lenses, and their replies have me on a new track of exploration.

    They were talking about the visual component of vertigo and different physical therapy exercises that can help the body compensate. Here's some of what they told me:

    "One of the things that I feel is important is adding motion to the activities. By that I mean after tracking objects you track with your head in motions like you described, then move on to tracking and focusing with your body in motion, then adding the challenge of varying postural balancing while doing the above. Beyond that other perceptual strains (like noise and mental processes like math) are added to overload the system. When you can deal with high levels of sensory input and function well you can usually overcome the symptoms. You may see it referred to as visually-related motion sickness, See Sick Syndrome(SSS), or Neuro-Ocular-Vestibular Dysfunction and a few other names."

  9. Hi Peggy,
    that is really interesting about sensory input overloading the system. I'll have to discuss that in a future post

  10. David: I know, right?? I was pretty excited to see that, because it sounds exactly right for how I've been feeling. Those are precisely the things that make me dizzy, and I'm now realizing they are the very things I need to practice to keep the adjustment going.

  11. Mel, thanks! I will be asking my Dr. about that drug.

  12. I'm danish, so my english isn't perfect. I have a little story about meniere's and acupuncture. Before I write it, someone has to tell me if this thread is still alive, and if not, where should I write?

    1. Yes, the thread is alive. Go ahead! :)

  13. Hi Arne,
    You can write here I'll see it.

  14. Hi everyone,
    I have exchanged a couple of emails with David now, but after reading the comments here, I felt compelled to add to them. The EN&T Dr. I'm currently seeing only does the following-Starts with 1 week of Triamterene, keeps me on Meclizine. Since that didn't do anything other than maybe lessen the severity of the 2-6 spells I experience daily, he immediately began Decadron injections. He said in my very first visit with him that he has NEVER had to give more than 3 injections to any of the MD patients he has treated. After my 2nd injection, he upped my Meclizine from 3x daily to every 4 hrs., and has me on 5mg Valium twice daily (I actually only am doing once now at bedtime to help me sleep through the spells I got at night). I since have had my 3rd injection in 3 weeks, and am now going for #4 Monday. I am his first MD patient that has had to have a 4th. He also told me during my 1st visit that he refuses to do any of the surgeries, nor will he do anything other than the DEX injections. Guess it's time to see a different Dr.? I'm thinking of seeing the only Neurotologist in the Albany, NY region. It's about a 40 mile ride for my wife and I (still not driving yet) but maybe it will be worth the trip?

    1. It will absolutely be worth the trip. I'm assuming your ENT isn't a surgeon, either? From what he has told you, I'd say his experience of Meniere's patients isn't very extensive, which isn't his fault... he just might be a little out of his depth when it comes to dealing with a more intractable case.

      That sounds like a LOT of Meclizine to me, particularly if you work with heavy equipment, and even moreso if it's combined with Valium. Meclizine made me like a zombie on only one pill.

      You really could benefit from a second opinion. There are other options, and they are not all surgical. For instance, you might be a good candidate for the gentamicin shots, although it could give you some balance issues even after you recover from the initial reaction.

      I live in NJ, about 15 miles from Manhattan, and I have traveled to Manhattan to meet with a doctor at New York University, as well as down to Edison (perhaps 20 miles away) to meet with doctors at the JFK neurological institute (I forget the exact name). I think perhaps I have more ENTs and neurotologists within easy reach than you do living upstate, but if I were you, I think I would make that trip.

      Good luck, Don. I've been where you are, and I'm much better now. I have no idea whether I will go back to having attacks on a grand scale, but for now I have at least some relief. Keep pushing the envelope, and I hope something helps you soon.

  15. Thankyou David and Peggy.
    I would like to tell about a personal experience with acupuncture. But first I have to mention, that I'm aware that there is no simple explanation concerning Meniere's, and secondly that my problem is very new, only three months since the first symptoms.
    Therefore I do not know if my points are common knowledge, OR if these things works in general. I might, as we say in danish, be riding my own hobby horse.

    Anyway, after a couple of months with "wind-blowing" in my ears and fullnes in my right ear, a couple of vertigo attacks and some tired- and dizziness (and after avoiding coffee and alcohol and keeping salt and sugar very low)I went to an acupuncturist.
    She didn't know much about Meniere's, but she told me, that as far as she had experienced, tinnitus types of problems ALWAYS has to do with using more energi than you have. ALWAYS, she said. After her treatment I had four days without any symptoms, for the first time in 2½ month.

    Her explanation is, according to this old chinese science, that my body is too hot. She could not give me any guarantee (tinnitus is very tricky, she said), but she could help me to "cool down" and to strengthen my kidneys. She said that I had to slow down in general.
    I have been much to busy for too long, and I have been frustrated because of som personal things.

    Because I can feel the treatment, I borrowed a book about acupuncture from the library.
    I read, that the kidneys are (among other things)controlling the ears. Problems like tinnitus may be caused by weakened kidneys (because of worrying, stress, too little sleep, acid forming food etc)
    Under "Flaming liver fire" I read that extreme emotional pressure, frustration and anger can lead to (among other things) Meniere's.
    By coincidence I just found a page where these views on kidneys and liver are mentioned.
    I don't know if it's possible to heal my unbalanced situation, but I feel that I'm on the road, with treatments, more sleep, less stress, good food, more joy and higher awareness in my daily life.

    1. Thanks for linking to the slides on a naturopathic approach. It fits in with other sources on vitamins and so on, and the section on Chinese medicine coincides with some of my own feelings. For me, most of these recommendations fall under the category of 'unlikely to do any harm so why not try it?'

    2. Jeff, I agree. Something else I've been thinking about lately is the impact of diet and exercise, as well as dietary supplements.

      I went to a nutritionist back in May after I had a bad migraine aura that resulted in an episode of aphasia, and she recommended that I take a new approach to my eating habits overall. I eliminated a lot of sugar, most prepared foods, added a lot of protein, fiber, and vegetables, and started taking a lot of supplements. In addition, I began exercising every day, whether it was for 10 minutes or an hour. I did whatever I could do, even if it had to be a minimal effort on days when I didn't feel well. I'm still on this track and plan to do so for the rest of my life.

      In addition to losing some weight and getting stronger, I've noticed my symptoms don't seem to be as bad now. I haven't had a migraine or aura in months, and even though I still get dizzy a fair amount of the time, I don't feel so incapacitated by it.

      I'm not sure what to make of all this in terms of cause and effect, but I do know that changing my lifestyle has made me feel better overall. Perhaps a healthier approach to life does have an impact on MD and migraine symptoms? In any case, it certainly doesn't hurt! :-)