No Meniere's?

I don't have Meniere's but I do have a severe hearing loss.  Mine is high frequencies...I'm profoundly deaf in those.  I do wear two hearing aids and one of them drives me batty.  My ear itches and now I'm having some problems with the skin inside the canal.  As Roseanne Roseannadanna used to say, "It's always something!"

 

I will get dizzy if I look up.  I almost fall over when I am trying to turn off my ceiling fans.  I don't get on ladders anymore and step stools either, unless I have something to hang on to.  I never used to have a problem with dizziness.

 

Sherrine

Thanks, guys, for the replies. Donna, I also have the flickering sunlight and action movie problems, big time. (Wouldn't even TRY Avatar 3D.) One kind of class I have never subbed in is PE because I know the bouncing balls coming from all directions, or just the screaming kids running around the echoey gym would do me in!! (Plus, it takes me forever to understand game rules!) :) What kind of test did you take for Meniere's? I sure don't want to buy a hearing aide if it's not going to do anything. Too bad your son has symptoms too!

Sherrine, how did they diagnose your autoimmune inner ear disease? I know just what you mean about ceiling fans - the fact that they're up high and the fact that they're spinning around make them very tricky. At church, if there's a ceiling fan anywhere in my field of vision, I sometimes have to cover up that field with a paper or something. Of course, I would never remember to bring a hat!

Gilda Radner was such an inspiration! Have you read her book by that name, "It's Always Something"?

I think they can test with an MRI now.  Back when I was dx'd, they did a bunch of things like shoot water and air in my ears, then waited to see how long I recovered from the spinning by watching my eyes.  They also spun me around in a chair in a room with checkered walls then made some observations about recovery time.  The tests aren't so grueling now.  I did not finish the entire round of testing because I got too sick and started barfing.  Because of the family history and all my symptoms, I was just told it was Meniere's.  I take a valium when I feel it coming on.  There is a condition called Benign Positional Vertigo which is the dizziness brought on only by head and eye movement and the symptoms only last a few minutes.  Has your doctor ever mentioned that?

Donna

Autoimmune Inner Ear Disease (AIED) is very similar to Meniere's.  We have a bilateral hearing loss, have hissing, ringing, etc. in the ears and have some dizziness.  I don't have the dizziness to the extent that Meniere's patients have.  But, I do get dizzy because my inner ear is involved.  I also can eat products with sodium in them.  It doesn't affect me.

 

about 20 years ago I started telling my husband to stop mumbling.  He would tell me to get my ears checked.  We bantered back and forth with this for months.  Finally I was soooo sick of his mumbling that I decided to have a hearing test so I could wave the results in his face and tell him to STOP MUMBLING!  Well, the test showed that I had a hearing loss in one ear and that I should consider a hearing aid. 

 

Humph!  What did this doctor know!!!  He was just a little suburban doctor.  I decided to have my hearing checked at the Cleveland Clinic, since I lived in Cleveland at the time.  I got an appointment for the following month.  When checked, I now needed hearing aids in both ears!  They set up an appointment for the next month and, when checked, my hearing had fallen off a lot more!  I was devastated.

I was sent to the specialist there and he put me on megadoses of Prednisone....80 mg a day for one month.  Many times this will stop the progression of the disease.  If it did, I would stay on a low dose to maintain my hearing.  Unfortunately, I was one of the few this didn't help.  Blood work was done, too, and it was determined that I had AIED.

I was fitted for hearing aids and, Achey, it brought my hearing back to 96%!  I could hear the birds again and I honestly didn't realize how much sound I was missing.  But, two weeks after getting the aids, I woke up, put the aids in, and couldn't understand what was being said on the television.  Again, I was ticked.  You spend all that money for hearing aids and they break in weeks!  I called my audiologist and she had me come in.  She tested the aids and they were working fine.  She tested my hearing and I had lost nearly all my high sounds...overnight!

I got digital hearing aids and they do help with crispness of sound but I do have to lip read.  My low sounds are still good but 96% of speech is made up of high sounds.  I also need closed caption on televisions, barely can use a phone, and can't go to movies.  I saw a specialist here in Tampa who wanted to do the cochlear implant on me.  He said, "It's not IF you get a cochlear implant, but when because you WILL lose all of  your hearing."  I told him that he hadn't factored God in that equation and he smiled and agreed.  That was 11 years ago!  I'm holding my own and am praying for medications or adult stem cell research to help me.

Now, you can try hearing aids out before you buy them and I highly suggest you try it.  My hearing loss is extremely similar to Meniere's except  you shouldn't lose yours so fast...if you lose it at all.  But, the difference was amazing.  You do have to decide to wear them.  They were really irritating at first but I wore them anyway.  Usually I don't even know I have them in...except for that itchy ear.  I haven't had it checked out but I will.  I probably have a skin infection because, when they itch, I will stick my finger in my ear to scratch it.  Not too smart but....  Anyway, give it a try.  You don't want to miss the wonderful sounds if at all possible.  Oh, how I would love to hear the birds sing again.......

Sherrine 

i just got hearing aids a few weeks ago. they said i was probably born with some of the hearing loss, but that it might have gotten worse over the years. the last full test i had was about ten years ago.

i think mine are digital. they are expensive and the insurance didn't pay for anything, but they help so much. i have never heard so clearly before and now i don't really hear "funny things" anymore. I actually hear what the person said and not something that has nothing to do with it!

mine is a bte (behind the ear) with a small receiver/ microphone going into the ear. right now the receiver is too big and falls out all the time (im getting the smaller size this week), but i don't really notice that they are in my ears anymore

one tip is that if you get hearing aids, you should use the steps (slowing getting to your hearing loss, and not going straight to the loss as soon as you get them). my dr decided to go straight to the loss so it would help me alot in class, and she said that since i was young, it wouldn't take my brain as long to readjust, but i can't wear them when there is alot of noise. since you aren't used to the noise, it can get to be too much

-Aliza

Meniere's is difficult to diagnose, even for ENT's, so I would be hesitant to fully trust the opinion of an audiologist.

There is a something called atypical Meniere's, when only some of the classic symptoms are present. Often, the others develop later. I was diagnosed with this initially because I didn't have the tinnitus or hearing loss. I now have developed both. The tinnitus is intermittent, but the hearing loss (low frequency) is permanent. Like Donna, I was also told by my ENT that a hearing aid won't help Meniere's associated hearing loss. Right now, it is mild, and I hope it will stay that way.

I was diagnosed a few years ago and had some of the same tests as Donna. I, too, had to quit half way through because I couldn't take it. One test that was done was called an ECOG. It wasn't too bad, and my ENT felt that this was the best indicator of Meniere's. Apparently, certain patterns show up in people with Menniere's. I don't know about an MRI. My doc. didn't offer one.

Do you live near a research hospital or near an ENT that treats a lot of Meniere's patients? There are lots of other inner ear disorders that can cause some of the same "yuckies" as Meniere's, including BPPV. You can also have more than one thing going on at a time. I guess I would want a definitive diagnosis before I spent a ton of money on a hearing aid.

Good luck! I hope you get a good diagnosis soon.

Hugs - Austen

I also want to add that one of my biggest fears is to lose my hearing. :( I've already lost one ear to nerve deafness in childhood (thanks, measles) and I'm VERY concerned now that tinnitus is present. Am going to hope for the best!!