Menieres disease?

[SumDay]

Anyone have experience with Menieres disease? DH has been dizzy, nauseated and feels like his head is in a bucket of water.

He just had a PET scan from his oncologist (3 years in remission for Non-Hodgkins Lymphoma) and everything was clean. However this dizziness thing has been going on since he had an ear/sinus infection over a month ago, and 2 courses of antibiotics haven't helped.

He went to an ENT today, who detected some hearing loss in 1 ear. He referred him to an Otologic Center (practice limited to diseases and surgery of the ear & related structures). That appointment is September 18th.

DH is a little wacked out, as it seems this is kind of a PITA disease - no real cure or treatment... Just a diagnosis followed by "learn to live with it". It's apparently a Social Security qualified disability!

Anyone know much about it? I do know that Google is my friend, and believe me, I've been reading all I can find. I'm just wanting to hear from others who may have it, or know someone who does. And thanks in advance.

 

[bbbamI]

Here's a thread ...

http://www.early-retirement.org/forums/f38/menieres-disease-62627.html

 

[LOL!]

And not to be confused with easily treatable BPPV:
Benign positional vertigo - PubMed Health

 

[SumDay]

Thanks bbbamI for sharing that thread - very interesting. It seemed to focus more on the impact of the OPs finances, which, thank heaven aren't really a huge issue for us at his point. I'm hoping to learn more about the disease itself, and hopefully managing it. Honestly, I hope I don't get too many responses, because that means we don't have too many on here who suffer from it.

 

[jerome len]

I've had some experience with dizziness which was the result of an inner ear infection. My Doc recommended some over the counter medications and I was better in 24 hours.....but, it was scary, I was out of town at a business meeting and since I couldn't even walk because of dizziness I was almost in the hospital. So, 24 hours later and I had a great result.

Two friends have had the exact same symtoms in the past. One friend totally lost hearing in one ear.......it never came back. The other friend lost hearing in one ear and slowly regained it over a period of months.

What do I think I've learned? All you can do is listen to the Docs', hope for the best and learn to live with whatever happens. I don't think anyone can really give accurate advice based on my past experiences. Good luck, I wish the best for you. Let me add that everybody felt better within a month or so.....except for the hearing loss. Again, the best of luck to DH.

 

[Ally]

I have had it for 30+ years. As long as I take a daily diuretic, it rarely bothers me anymore. Of course, I avoid spinning rides with the grandchildren! I hope he finds successful treatment, because it can be pretty miserable. The medicine I take is Diamox. It keeps fluid from building up in the ears.

 

[FFC1964]

I have been a lurker for years but had to register when I read this post...in hopes of possibly helping someone.
I had an inner ear infection quite some time ago which left me dizzy and with a feeling of fullness in my ears. I lost quite a bit of hearing at that time. I went to a family physician who sent me to an ENT. He diagnosed me with menieres disease. I did not believe him because I did not think I had a lot of the symptoms that went with it. I went to another ENT who was supposedly one of the best. He too told me I had menieres disease. He was a complete ass who gave me no hope. Again, I was not totally convinced. He also told me I could possibly be pregnant.....at 42 this was not good and I knew I was not! I was totally bummed out as I too read what a PITA it would be. I was still feeling unstable,hearing loss and a fullness in my ear. After about 6 months I went to Mayo Clinic because a good friend told me she would never have lunch with me again unless I went. HA! Mayo gave me VERY simple balance exercises to do and told me I had damage from the ear infection. My balance issues were better in about 2 weeks and I had been suffering for 6 months. I had to have my husband hold my hand when I went on walks. They told me this was not that uncommon as one of their employees had the same exact issue from an inner ear infection. The Mayo doctors said it could take a year to heal. I went to a chiropractor who did this thing to my ear as well as accupuncture. The fullness went away with a couple of months of chiropractor care and acupuncture. This was several years ago and I sometimes feel I have some small lingering problems with balance but it is not menieres disease but some inner ear damage. I have had further hearing tests and my hearing has returned for the most part. This was not meniere's disease and I am still mad they made me go through that worry. I hope this helps and I hope the ear infection is the issue.
Good luck to your husband!
Sue

 

[Ally]

Welcome. Glad to meet you! I hope you will post sometimes, now that you've started. I'm glad you went to the Mayo clinic and found out what is wrong.

 

[Helen]

Hi MelBay,

I have Meniere's. My vertigo attacks are pretty infrequent at this point, but I wear hearing aids in both ears. I was at my worst with it when crossing into menopause.

Some people find relief through diet (low salt, and or no wheat), some find they actually have silent migraines, some have allergies, some have a malalignment in their neck, some have a strain of the herpes virus. Meniere's is idiopathic.

I have spent thousands of dollars over the years on medical tests and that is with good insurance. I have given up for now as nothing seems to have helped me with the symptoms.

There is an informative website, www.menieres.org. Remember that a lot of the people who post there have really bad symptoms. Not everyone who has Meniere's is down for the count with it.

Good luck to you and your DH. Feel free to PM me if you want to chat.

-helen

 

[Helen]

And not to be confused with easily treatable BPPV:
Benign positional vertigo - PubMed Health

Dr. Epley, who developed the Epley Manuever, was my doctor here in Portland, OR. He almost lost his license to practice as many of his "peers" thought his work was pure bunk. He certainly proved them wrong.

He was not into early retirement. He had his practice until he was around 90. I think he was in his late 80s when I let him put a needle into my eardrum to do a steroid drip. He did a fine job.

He wasn't able to help me with my symptoms, but he is my idea of a hero.

 

[Zantastic]

Being new to Meniere's Disease, I'm certainly no expert, but I'd say the chances that it could be something else are good if your DH isn't experiencing actual vertigo. There's a big difference between vertigo and dizzy. Also, if his hearing loss is in the high frequencies as opposed to low, that would be another clue that it's not Meniere's.

Keep the faith! And unless or until Meniere's is officially diagnosed, I'd stay away from menieres.org. It's a great resource but can scare the crap out of you as it did for me when I was doing my research.

It's comforting to see that there are some others on this site with Meniere's that are living active, full lives.

 

[Helen]

Being new to Meniere's Disease, I'm certainly no expert, but I'd say the chances that it could be something else are good if your DH isn't experiencing actual vertigo. There's a big difference between vertigo and dizzy. Also, if his hearing loss is in the high frequencies as opposed to low, that would be another clue that it's not Meniere's.

Keep the faith! And unless or until Meniere's is officially diagnosed, I'd stay away from menieres.org. It's a great resource but can scare the crap out of you as it did for me when I was doing my research.

It's comforting to see that there are some others on this site with Meniere's that are living active, full lives.

+1

 

[PawPrint53]

Dr. Epley, who developed the Epley Manuever, was my doctor here in Portland, OR. He almost lost his license to practice as many of his "peers" thought his work was pure bunk. He certainly proved them wrong.

The Epley Manuever eliminated my benign positional vertigo, which was so bad that I'd vomit when I had an attack. I was so grateful that the ENT I ended up seeing was into doing that. Only needed one treatment. Occasionally when I have a cold, I get some dizziness, but it goes away if I use a decongestant.

I worked with a guy with Meniere's, and changing his diet helped him.