Hearing Loss/Hearing Aides

[snooz23]

I am wondering if any weggies out there have splurged on a hearing aid to correct the damage experienced in the ears. Sudden, moderate hearing loss is how mine presented. It did eventually move into the lungs as well but most of the sinus areas (besides the mastoids) stayed clear. Anyway I have been using a hearing amp. (the kind from Radio Shack that allow you "to listen in on your neighbors"--it was only $15). Since I was finally DX and the hearing I do have left is stable, my Cleveland Clinic ENT has given me the medical prescrip. for the hearing aids. I also experience a lot of ringing, roaring and buzzing in my ears/head at all times and it is my understanding some of this may go away w/ the aids. Just curious to see if anyone has first hand experience and the results they have found.

[Jack]

I would be interested in this too.
I was going to take the route of surgery and grommets, but the more I read, the more my suspicions are strengthened that they are not the answer for Wegener's patients.
I miss a great deal with my restricted hearing and tinnitus, probably hearing only half what is going on around me.

[elephant]

Back in 2008 I was experiencing severe hearing loss, tinnitus and ears feeling full. I was treated with antibiotics, thinking it was an ear infection. Had multiple hearing tests that confirmed I have damage to both ears. The ENT stated that I don't need hearing aids at this time. My ears did improve once they started the high dose of prednisone along with the cellcept. My ears still sometimes on/off get clogged ( reduced hearing). I have relatives who use hearing aids and they say it takes a while to get use to them, they work pretty good. The hearing aid are about two thousand dollars.

[Barbara1966]

Snooz 23,
I will let you know on Monday, I have an appointment with the ear specialist to discuss the hearing aid. It had been 5 months for me, from being diagnosed with WS, and 7 month with ear problems. I experience the same symptoms with my ears, and I'm using the amplifier also.
I'm not getting any better and also I have problem with the lungs plus non-stop cough, I'm not responding to the treatment the way my doctor would like me too.

I already have 4 treatment of Cytoxon 1245 mg every 4 weeks
Prednisone 40 mg per day
Sulfameth/tmp - 1 tablet every 3 days
Benzonatate 200 mg - 3 per day
Hydrocodone apap 10-325 as needed for cough
Calcium/magnesium/ vitamin D -3 tablets per day
Omeprazol 20 mg 1 tablet per day

Please e-mail me at [email protected] if you have the chance, I'd really appreciate it.

[Doug]

The ringing in my ears seems to be permanent after six years with WG and treatment. Did I read somewhere that antibiotics also can cause it, too? Sangye? Anyway, like Jack, my hearing is greatly reduced because of the ringing, but wiped out in my right ear by shingles and an ear infection it fostered.

[snooz23]

How have you guys adapted to not hearing things? If I don't have my amp. in I have to ask people to repeat things like I am 80 years old. Since I am not quite 40, it is frustrating for me not to hear, especially since I have a 2 children (ages 2 and 4) that I literally cannot hear crying sometimes. I think I have to make the splurge for these hearing aids (of course they are not covered by insurance, which I am so lucky to have). I guess I was hoping more hearing would come back. Does your hearing go up an down at this point? I have only been at this WG thing since April this year. I have not entered any kind of remission at this point (I don't think?) and am wondering if that stage may change my hearing again? Thanks for any input.

[elephant]

Once you get close to remission sometimes your hearing comes back. Mine seemed better on high doses of prednisone. I'm on three drugs that lower my immune system and my hearing is better, but still have hearing loss. Hopefully you will get your answer with the ENT specialist soon.

[snooz23]

Thanks....that seems a bit encouraging to me. Maybe I should wait it out a bit more just to see if I get back to more functional hearing before I spend the money. I have only been on the combo pred./meth. for two months--is that even enough time to be thinking about a remission state? However, before I was dx. I was on pred. only since July. Various doses from 60mg down to 20mg. Currently I am at 35mg and tapering by 5mg/week--and my hearing really wasn't a whole lot better at the higher doses besides my main goal at this point is getting on a much, much lower dose of pred. I am just hoping my body holds out (I can't add on more side effects to my long laundry list of complaints from this drug...but then again I am never sure if it is the pred. or the metho. or the disease or the damage that I am left with).

[elephant]

I understand where you are coming from. Give yourself some more time. It took over six months for my ears to feel better.

[onatreetop]

I dont know about you but allergy symtoms have always been an issue for me. That includes hearing lose , or fluid in the ear. I use to take allerga180mgD but now because of my blood pressure I cant. the prim doc switched it to singular 10 mgs and nasacort. It helps to keep me breathing much better. Singular is also an asma med so I believe it is keeping my airways open. Sorry about the spelling. i beleive that the space bar is going too.