Meniere's, Under Reported?

If you haven't suffered from unrelieved Meneire's for a long time this comment won't be very helpful Or interesting to you.
I have had REALLY severe Meniere's for about 7 years and it has destroyed many aspects of my life. When I get an acute attack instead of lasting a few hours or days mine can last for months, getting somewhat better so that I can walk from bedroom to kitchen, and then sometimes often so bad I have to try to crawl to the bathroom. For extended periods of time, many months, I have been unable to leave my home. Sometimes it comes on so quickly that I immediately lose consciousness. This has led to falling immediately and being knocked unconscious twice and the worst was breaking my ankle very badly. During these long acute periods I can't read, use a computer, watch TV, look at someone who moves even their hands, or look out of the window if the trees are moving from the wind. Of course no movies, dining out, work, driving, or going anywhere. Even if I cover my eyes in the car I still get dizzy as I do if walk outside. I can't sit across from someone if they move their hands or are eating. I had stopped driving 3 years ago because I was afraid if I had a sudden attack while driving I could injure an innocent person. For the past year I have been getting better. Clearly I can use the computer now. I started driving a bit in June.
I have been taking the triamterene each day for 7 years. Perhaps it has helped and I would be much worse, but my life didn't change. I take 1 bonine each night with the hope that it prevents some attacks, but no way to know.
But, when I have an acute attack with lots of nausea the following has led to a diminishment in symptoms, especially the nausea. 25mg Bonine( which I believe makes me less drowsy than other brands), up to 25mg of Valium a day, and compazine as needed.
They don't know why but many "authorities " suggest that Valium is particularly helpful for Meniere's, and it has helped me. I guess they basically want to make you almost unconscious and hope that when you awaken you will have some improvement, and when using the above I always have gotten over the nausea after a few days or a week. Be very careful about the potassium level in your blood during an acute attack becoming so low that you end up with a heart attack.
I have done a lot of research and there is no verifiable clinical evidence that any medication effects the symptoms or provides a cure. The origin of the disease is unknown, but most speculation is an imbalance in the fluids of the ear, but even that has not scientifically been verified.
I am always very happy when a patient gets relief from anything, like the Triametene. There is a pending Stage 2 research study and I am thinking of volunteering. They are a small venture capitalist funded company in silicone valley.
None of the big drug companies are doing anything which I wish I understood because there are so many victims they could make a great deal of money.
Do you think Meneires is under reported and that is why none of the big companies are interested?
We all need to make sure our physicians make a conclusive diagnosis and that they report the numbers to the NIH. It is the second most common cause of disability in the UK, and if diagnosed one's license is automatically suspended for 1 year. I am also on their National Health's email list in case they find something over there.
We should get organized and speak out through letters and phone calls so that the health care community becomes aware of the terrible cost of this problem, and they devote more resources to it.
Where would sufferers be if the cancer, heart disease, lung disease, breast cancer, and AIDS people had not organized and applied pressure to make the public, elected officials, the NIH, and drug companies become more diligent in curing and treating those diseases?
Some tips: When you walk look straight ahead and pick a point in the far distance and don't take your eyes off that point. Get sun glasses that help block your peripheral vision (not while driving). When riding in a car cover your eyes and avoid circling in parking lots or going around corners. Going up and down grocery aisles in a busy store should always be avoided. Try to shop very late in the night, or very early. When an acute attack lasts a long time use audio books to keep your mind active. When you are severely nauseated don't eat or drink anything for 24 hours and then start with ice chips, and later a little broth if you can manage it.
Every one probably has been advised to restrict sodium, and not to use any alcohol or caffeine.
I know a lot of people have had steroids administrated into their ear. It does seem to help some but their is no clinical evidence to support it. They believe the liquid steroid migrates away so quickly that no good is done. That is why the research company is trying to develop a steroid that is a type of gel which will be almost like time released med, and stay in place longer.
I have decided not to have the nerve cut surgically as one can lose all of the hearing and still have symptoms from the other ear.

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Hi, Lois! Sorry about everything you've been through and thanks for making this extremely helpful post for others.

I'm not sure if it's really under reported/diagnosed, or if some people are suffering symptoms caused by other issues, such as medications they are on, or other medical conditions.

And one thing I want to comment on here is that not drinking anything for 24 hours is not safe advice to give anyone. Depending on someone's overall health and medications they may be taking, that could be a very dangerous thing to do, dehydration can set in very fast. If they need to cut back, after getting their doctor's okay, they should still do at least ice chips.

Does anyone else have experience with this illness?

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You are very right about dehydration. I should have included the warning with my words. However, when I get badly nauseated with Meniere's' anything I ingest, even the liquid from ice chips makes me start vomiting again. I realize it isn't a great choice, but the alternative is worst for me, and if I can't keep down the water from ice chips, they are not helping but making my actual recovery longer. My doctor is aware and actually suggested I try it. It helped. After 24 hours I try the ice chips. One of the problems with Meneire's is the dehydration with constant vomiting. I always get dehydrated after a terrible attack. I drink smart water as soon as I can, but I don't over due the water because it dilutes the electrolytes I have left, especially the potassium. I hope most people don't have this severe a case so that they don't have to use the measures I have too. I realize that the Meneire's I have is potentially life threatening. I am concerned, as are my doctors, that I will have a sudden attack, fall down and severely injure my head or get cut badly and bleed out while I am unconscious. They want me to always use a walker when I am vertical, just in case.
I don't think most people have the sudden onset with unconsciousness, but I have read about it in the literature.
One of the problems I do have is being unable to take my medication for the period of time in which I can't keep anything down. Luckily for me none of my meds deal with life threatening issues. I suppose if they did I would have to try to get a different firm of delivery, other than orally.

In your comment you mentioned dizziness brought on as a side effect from a medication. This can end up being Meneire's. That is what happened to me. Often people start feeling the symptoms when they start a new medication but the symptoms don't stop when they stop taking the med. That is the point I am trying to make. A great many meds list dizziness as a side effect. If one suffers from dizziness as a drug side effect and it doesn't stop, it may be Meneire's. So because the symptoms are brought on by meds the side effect can be Meneire's, not just dizziness as the label says. I got Meneire's as a side effect of the off label use of Neurontin. There was a somewhat publicized law suit filed by the US AG that was settled for several million. The money was distributed to each state's AG office.

Patients need to understand that drug side effects don't always go away when one stops taking the drug. My physician wasn't surprised by this, but I was.

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Why won't this web site allow me to post the information that Meneire's can be a side effect of a medication? The side effect of dizziness that doesn't go way can be Meneire's.

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