Meniere's disease.... just learn to live with it???

[HysteryDiagnosis]

Mom is doing badly with it.... I'm told there is no help for it... any and all info greatly appreciated, testimonials, medical treatments, alternatives, voodoo, whatever. A friend of hers told her that he has had it for 27 years.... and "just learn to live with it" was his advice.

Anybody who has ever tied one on enough to have the room spinning would have an understanding of how bad this condition can be.

I have found several references to autoimmune activity in the inner ear in Meniere's, as well as hyperinsulinemia being associated with it... mom is a diabetic, on glucophage, and is afraid of anything that would help lower her blood sugar (that doesn't come from the men in the white coats).

[Hawkeye-X]

1. I have that disease..

I have also learned to live with the disease. I'm also deaf, but I do wear hearing aids, and learned sign language. It's a disease that is something that we can all cope with, and there are a lot of support groups for people with Meniere's, but with the proper balance, I can control my vertigo.

I hope your mom will be OK. All she needs to learn how to deal with her balance.

[HysteryDiagnosis]

4. I had an inner ear infection once.... and I had the spinning

room going on.... I NEVER WANT TO GO THROUGH THAT AGAIN. Thanks for your input... I am hoping to find some sort of method of stimulating and supporting her immune response, or rather correcting it, since I am finding that there are antibodies to various human virus involved with familial meniere's, and so forth.

I am starting to believe that alot of what we perceive as an irreparable disease state, is an immune response that has turned on our own tissues as is MS, Lou Gherig's, and even many cases of rheumatoid arthritis.

Genetics are involved because some of the protein codes on the surface of certain virus and certain bacteria/pathogens match some peoples' protein codes on their cell surfaces.

Thanks again.... 4Mor.

[murielm99]

2. A teacher friend of mine has it.

He has had it for many years. He has learned to control his balance and minimize the symptoms. It does get bad at times, though.

There is little that can be done for it. I am sorry.

[kedrys]

3. One of my aunts was diagnosed with it

She underwent surgery that helped drain the accumulation of fluids from her inner ear (the surgeons installed tiny shunts, IIRC), and her condition improved greatly. She has not had any reoccurence of the severe symptoms in several years, although she gets a slight dizzy spell now and then.

The Meniere's Disease Foundation is a good resource site, including a page called John's Treatment, which narrates how a Meniere's sufferer is successfully handling his symptoms with a cocktail of natural supplements.

It's worth noting that Canada (where my aunt lives) and Europe have a much better handle on how to treat Meniere's (there is no known cure at this time), so keep that in mind during your research.

Good luck! :)

[HysteryDiagnosis]

9. Oh oh oh oh oh oh....... now you've done it. You've given me the

ammunition I need. Thank you forever.... I would like to email this John and inform him about Arabinogalactan.... Transfer Factor and or Glyconutrients as an immune boosting tool.... this page is just what I have been looking for, thanks a million!!!!!

http://www.menieresfoundation.org/johnsregimen.htm

[kedrys]

10. We come to serve. Glad I could help. :) n/t

[SaveElmer]

5. I believe Alan Shepard had it...

Caused him to be grounded for many years. But he had surgery that corrected it.

My step mother had it. She learned to control the symptoms and eventually it resolved itself permanently. So don't give up hope.

[silverweb]

6. So far that's about it.

I've got all the symptoms except the dizziness. So far. Each doctor I've seen basically says the same thing -- "Good luck with that." I'm otherwise healthy, except for some annoying but not serious osteoarthritis. I don't know about the hyperinsulinemia (do you maybe mean hyperglycemia?), but if your mom doesn't want to take more medication for that, I'd stress dietary control by sticking to a good ADA diet.

I've had tinnitus that I liken to a "small swarm of bees" in each ear 24/7 for nearly 15 years, along with a sense of fullness in both ears. I thought it was going to drive me insane for the first couple of years, but I learned to "tune it out" most of the time. The tinnitus and sense of fullness are equal bilaterally, except when I'm unlucky enough to get a sinus infection or migraine. Then, along with the pain and other symptoms, the tinnitus gets so loud it drowns out almost everything else and day-to-day functioning becomes almost impossible.

So far, I've been lucky and am still functional. I worry constantly though that the day will come when the dizziness/nausea starts and will be disabling, or that my hearing is seriously impaired (and hearing is critical in my line of work). There's ongoing research, but nothing I've heard of yet that has given consistent results. I've read in a number of places that vitamin B-Complex with C supplementation is helpful, as well as chronic Sudafed use to reduce/equalize pressure. I take both, but haven't really noticed any appreciable difference.

Good luck to your mom. I hope she's able to find some relief.

[derby378]

7. A Republican friend of ours from Texas had it for years

It made her life miserable - she had to restrict her diet heavily because salt and other additives exacerbated the vertigo she experienced. I even saw it bring her to her knees because the symptoms were so bad.

She had shunts put in her ears, but with little effect. She eventually had a special destructive procedure performed where a powerful antibiotic was inserted into one of her ears to destroy a particular nerve. It seems to have corrected the problem, but she cannot have the procedure repeated in her other ear, or she'll be confined to a wheelchair for life.

For now, however, she's doing well, and no longer has those attacks of vertigo, room spinning, etc. This is very encouraging.

On edit: Spelling errors corrected.

[punpirate]

8. Worked with a guy who got it after...

... catching the flu and the infection invaded his ears. He was very, very bad off in the first eighteen months. Everything I could find on it for him and what his doctors verified was that the five-year diagnosis for those with and without surgical intervention was about the same.

It's pretty much an imbalance in fluid in the inner and middle ear (there's a little sac in the ear which is supposed to act as a pressure balance which is implicated in the disease). And, when one ear is affected and the other is not, or both ears are affected to different degrees, the way the brain interprets the signals drastically screws up balance and orientation. The short answer to the problem is that it takes the brain quite a while to sort out the problem and adjust.

The guy I knew ended up taking dramamine-like drugs and had to wear hearing aids for quite a while (he, initially, had about an 80% hearing loss in both ears), but he was functioning much better after about three years. He'd had surgery in one ear, but it didn't improve hearing, disorientation or the symptomatic vomiting.

He just had to live through it until the symptoms mitigated.

[agingdem]

11. Have had it for years...

When the room spins and I can't stand up...I call the doctor and he puts me on a short pack (8 days) of cortisone.

[LandOLincoln]

12. I've had a very mild case of it since 1978, but even

though the attacks have gradually increased over the years, from one every 2-3 years to 1-2 per year, they're still infrequent enough to be inconvenient rather than debilitating. I've never seen a doctor for the condition, in fact until recently I didn't know that it was common enough to have a name.

In any case, your mother has my deepest sympathies. I don't think I could live with it on a daily basis, as so many are forced to do.