Comments

October 25, 2006 at 5:27 pm

(1) Sandy Paschall says:

I have been diagnosed with AIED. Also CochlearHydrops. It looks to me like they may be one and the same. Does one always go deaf from these?

November 11, 2006 at 1:21 pm

(2) Rodger says:

Hi Sandy !

I see that no one has responded to your inquiry, and thought maybe I could lend some moral support. Cheering you up, if you are like me, is probably impossible.

My feeling is of isolation and loss of worth. I am probably feeling sorry for myself, but find it impossible not to do so.

On 11-6-06 I suddenly lost hearing in my right ear. Actually, to be more precise, I have lost low requency response, so I am not hearing voices. I can slightly hear some high frequency, but not with any loudness. I can not understand human voice in my right ear.

I have gone to an ENT and am presently on prednisone until 11-20. On 11-28 I will have an MRI, to exclude other possible causes of the problem.

I am sure you feel like me: isolated and depressed. So much so, that I called my ENT doctor yesterday and he prescibed Xanex so that I could sleep.

I haven’t officially been diagnosed with AIED, but I suspect that is what it is, based on my research.

I am taking a chance you might want to talk about this. If you aren’t, I certainly can understand.

On the other hand, I would be very happy to continue this dialog, if you so choose. I know first hand, what you are experiencing, although I can not know what your cause is (or that of mine, for that matter).

I only hope you have family that will help you cope. My wife is trying and I will have to depend on her more than ever.

Please let me know you have received this message even if you don’t want to talk. That way I will at least know you received my message.

My e-mail address is heiseyamfm@aol.com

I hope to hear from you.

Rodger

January 19, 2007 at 9:20 am

(3) Emer says:

Sandy & Roger
I started losing right ear low freq in Oct 2006 and on Haloween the ENT said it was probably Meniere’s and put me on the no-salt, no-caffeine, no alcohol diet. I’d had dizzy spells for years (the falling into your computer sensation with only one of the really bad disabling spells), so we thought unilateral Meniere’s and prayed it wouldn’t go bilat. On Thanksgiving I woke unable to hear over the roaring in my left ear and did the 6 day prednisone pac. That helped immensely but all symptoms came roaring back after 2 days so my ENT ran the autoimmune panel and put me on 10 mg prednisone daily plus triamterine. On 12/22 the audiogram was normal and we found out that the immune panel was positive for AIED only and I have an appt with the immunologist on 2/13 for evaluation of meds. Symptoms started creeping back after 5 weeks on the 10 mg regime, but ENT doesn’t want to change doseage until I see the immunologist. Have either of you had the blood test come back positive for AIED? And if so, have you been advised to keep the restricted diet? From my research, untreated AIED causes deafness, but prednisone can reverse it to near normal levels if the intervention is early. I know I can’t be on prednisone forever, and it is frustrating that the symptoms are creeping back, and that all the med journals have little useful treatment info. Hang in there as you are not alone and feel free to email at emer_and_mike@comcast.net