Meniere's Disease - YouLookFab Forum

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Meniere's Disease

Mochi

Veteran

I don't have it. A very good friend of mine has an advanced case of it. It's an auto-immune disease that affects the inner ear and brings on increasingly severe, debilitating attacks of vertigo, as well as gradually causing deafness.

It's a long shot but I was wondering if anyone on here has this syndrome, or knows people who have it, and who have had any success with alternative treatments for it.

Thanks very much.

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17 replies

Latest reply was from Mochi

Caro in Oz

Veteran

An old colleague of mine has it. A change of diet really helped her, but she was one of the lucky ones.

http://vestibular.org/understa.....bular-diet

deb

Veteran

I just watched a PBS special with Kristen Chenoweth and she has it. I knew nothing about it before.

cheryle (Dianthus)

(website)

Veteran

I have never heard of it but it sounds very painful. I hope your friend finds relief Mochi.

Anonymous

Hoping that your friend finds help.

Aziraphale

Veteran

I'm sorry, Mochi, I wish I could help. The only person I know who has it is my cousin's husband, and although they don't live close and I'm not up to date with how he's doing, I don't think he has found any relief. It has been an ongoing problem in their marriage, I know. He has developed profound depression because of it.

I hope somebody else here has some suggestions.

greycat6

Veteran

I am so very sorry to hear this. I have BPV, Benign Positional Vertigo, which has similar symptoms but is not an autoimmune disease. I have a 30% hearing loss from BPV. Occupational therapy helped with my vertigo and balance issues and it is no longer debilitating. I feel so fortunate to be functional.

My friend had successful surgery in her 20's to cure her Meniere's but had a reoccurrence in 60's. It is debilitating and frustrating. Your friend is lucky to have a thoughtful, caring person in her life such as yourself.

Mary Beth (formerly LBD)

(website)

Veteran

Kristin Chenoweth talks about it in her biography. It can cause her to black out on planes because of the pressure inside the ears. I didn't know about the deafness.

Mochi

Veteran

Thanks, all, for your input and caring. There's not much--or really anything--I can do (outside of bringing her food, helping her around the house when she's bedridden, etc), and I already know there's little to nothing in treatment options--at least within conventional medicine. My friend had a bad episode about two weeks ago and lost a week of her extremely busy life, and yesterday had a much less severe repeat episode. We, her friends, are really concerned for her. Stress can definitely trigger an attack, and from that point she has to stop whatever she's doing and get into bed. If she's been driving, it's a huge issue; she has to pull over or try her best to make it home. Not life-threatening in itself, but nonetheless a miserable thing to deal with. And my friend refuses to be hostage to it, and lives her life, but it's increasingly worrisome that these episodes are playing out longer, and possibly coming closer together--though this may be a one-time thing.

I had no idea about Kristin Chenowith. How difficult. Especially as she is a musician, and may be on her way to hearing loss. My friend, in fact, is my tango teacher, and she has maybe a few years left before she becomes completely deaf without hearing aids. Each time she has an attack, it also creates problems with her balance that seem long-lasting beyond the episode itself.

She has many friends who care deeply about her because she's a wonderful person. Thanks for acknowledging our friendship.

eds

My husband has this. There are medications to take when you feel an attack coming on, but they pretty much just knock you out. A blessing when you need it! Different people have different triggers. A very low sodium diet is the first line of defense and we have worked very hard at that. The other thing that seems to help is a daily dose of Claritin. His attacks seem triggered by allergies. Probably the best thing you could do would be to offer to help her get home if she is stranded with an attack. They can come on very suddenly and having someone who can discreetly help you out can be very reassuring. If she lives alone, checking in when you know she is down would be helpful, too. You are a very kind friend to want to be sensitive to this!

Isabel

Veteran

I am sorry Mocchi. I friend of mine in Europe was diagnosed last December. By the time it was figured out, she was pretty far along too. It has started to affect her eyesight...blindness may set in. I was so heart broken and depressed for weeks after she told me. : ( Stress is also a huge trigger for her. She is a vegetarian and has always been really careful about her diet. I will ask her if they are doing anything in Europe that we are not doing in the US and I will get back to you.

Mochi

Veteran

Oh no, Isabel! Going blind? That's too much. Thank you for asking your friend. Truly. My heart is heavy for my friend as well. And eds, thanks for your take as well. I'm glad you both seem to be managing well. I will mention the allergy angle to her, though I doubt it's relevant in my friend's case.

I wish I could just be on call for her when an attack is happening. She's said it can strike with a warning of only minutes, and her job involves a lot of driving. Plus she's single. The situation is very difficult.

jackiec

Veteran

I have no advice. My mom gets debilitating attacks of BPV, so I know how awful that can be. Strangely enough,my 13 y.o. son is currently suffering labrynthitis which is inflammation of the inner ear. He's having terrible vertigo & dizziness, and we had him at the Children's ER yesterday. So, while I have no direct advice, I can sympathize with your friend. It really wreaks havoc on your entire life. You are a good, supportive friend.

texstyle

(website)

Veteran

I know someone who has it. I've heard that magnesium can help. Most people don't seem to take enough magnesium in their diet and it's supposedly common to be deficient but there isn't a good way to test the levels in the body. Taking or eating a lot of calcium can cause an imbalance of magnesium as can many prescription drugs. I try to take 400 mgs. to 600 mgs. of magnesium a day for my own health.

I also think chronic low iron (ferritin levels low) can be a contributing factor, but I don't have any info. to back that up. I suggest it because low iron can cause ringing in the ears and vertigo and an elderly friend who had this problem has to get regular iron transfusions to help her. It makes a huge difference in her case.

Getting the body's mineral balance in order would be good. A nutritionist who works with a naturopathic doctor might help.

Here is a link with some alternative info.:
http://altmd.com/Articles/Mx00.....dia-of-Alt

Michelle

(website)

Veteran

I'm very sorry your friend is going through this. I watched my father struggle with menieres disease for most of my life. Debilitating is the word for the attacks. My dad has the strength and energy of a horse, but those attacks would have him flat on his back in bed for a whole day.
The good news is that the disease can eventually reach a plateau. My father has lost most of his hearing in his right ear, but his left is totally untouched. What's more, he hasn't had a single attack for more than a decade now.
I'm not aware of any alternative treatments he would have tried - that doesn't tend to be his style. That said, I really hope your friend finds a regime that works for her and reaches a place of stabilithy too.
Your reply

Mochi

Veteran

Thanks, Michelle, texstyle and everyone. My friend is a high-energy person with a demanding schedule. So these bouts are eating up big chunks of her life. More than that, I can see how they're casting a shadow over her overall disposition. It must be so anxiety-inducing.

Anyway, she had another setback yesterday and I went over to help. It was heartbreaking. She was really upset and in huge discomfort, though she slept and was much better by the time I left.

The silver lining is that she really does have the most dedicated friends, and I am touched by that. It's not a phenomenon I'm used to, so it's reassuring to see human beings going the extra mile for someone who's valuable and important to them. I'm glad to be able to help out.

catgirl

Veteran

Nancy, I have a friend who has it, and she seems to be doing quite well after some real difficulties. I will ask her what she ended up doing for treatment.

Mochi

Veteran

Thank you, Una. That would be awesome.