It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board

  • Autoimmune Inner Ear Disease

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 01-06-2016, 08:39 AM   #1
    Melisa1
    Junior Member
    (female)
     
    Join Date: Nov 2015
    Posts: 10
    Melisa1 HB User
    Autoimmune Inner Ear Disease

    After a 2 1/2 month struggle with my hearing in first my left, then my right ear, I was diagnosed with autoimmune inner ear disease yesterday. I have only found 2 or 3 interesting personal accounts of other people's experience with this rare disease on-line and was wondering if there was anyone out there in HealthBoards land who has a similar diagnosis and would be willing to share their experience.

    Thanks!

     
    Sponsors Lightbulb
       
    Old 01-08-2016, 01:07 PM   #2
    mycatisthegreat
    Junior Member
    (female)
     
    Join Date: Jul 2015
    Location: USA
    Posts: 11
    mycatisthegreat HB User
    Re: Autoimmune Inner Ear Disease

    What are your symptoms?

     
    Old 01-08-2016, 01:47 PM   #3
    Melisa1
    Junior Member
    (female)
     
    Join Date: Nov 2015
    Posts: 10
    Melisa1 HB User
    Re: Autoimmune Inner Ear Disease

    Rapidly progressive, bilateral, sensorineural hearing loss. Had an MRI to rule out acoustic neuroma, MS, lupus, etc.

    Before mid-October, my hearing was at least normal and probably better than average for a 51 y.o. woman. Then, on the morning of October 13th, I discovered that I had suddenly lost a large chunk of high frequency hearing on the left side. A couple of days later, an audiometry eval bore that out. Cue the corticosteroids!

    Prednisone seemed to be a tiny bit effective for the 3 weeks I was on it, but after I tapered and got the medication, my hearing on the left side continued to deteriorate. At my first audiometry eval, my speech discrimination on that side was still 100% despite serious high frequency loss. By the beginning of December, however, I could no longer use the phone with my left ear. Two weeks before that, I had begun to hear some new, high-pitched tinnitus in my good ear, but did a really good job of remaining in denial about what was going on in my good ear until I noticed the deterioration with the bad ear. Then I checked out the good ear with some on-line hearing tests and figured out the bad news myself. That was a really scary, depressing day!

    I called my ENT back with news that my hearing loss was now in both ears. He referred me onto an oto-neurologist. Had to wait 1 month for an apt. In the meantime, I had to start using closed captioning with the TV. Also, just last week, I started having problems understanding the car radio.

    The oto-neurologist had about 4 different tests run, including another audiometry eval that showed I was now functionally deaf in my left ear and suffering moderate impairment in the right. He told me I would probably being going completely deaf and sooner rather than later if I didn't start immunosuppressant therapy ASAP ( which I am attempting to do). What he did not tell me, but which I have gleaned from reading the available online research is that there is no cure for this disease -- that I will be going deaf, immunosuppressants or not -- it is just a question of how long it will take. Will it be days, months or hopefully years?

    So, has anyone else had a relatively good experience with this kind of thing! Long-term remission? That kind of thing.

     
    Old 01-12-2016, 03:01 PM   #4
    mycatisthegreat
    Junior Member
    (female)
     
    Join Date: Jul 2015
    Location: USA
    Posts: 11
    mycatisthegreat HB User
    Re: Autoimmune Inner Ear Disease

    I'm sorry I don't have any experience with this. I wish you the best.

     
    Old 03-02-2016, 12:51 AM   #5
    AreGee
    Newbie
    (female)
     
    Join Date: Mar 2016
    Posts: 2
    AreGee HB User
    Re: Autoimmune Inner Ear Disease

    I have similar experiences and symptoms, I was diagnosed with Meniere's Disease, which is an autoimmune inner ear disorder that causes hearing loss, fullness/ear pressure, sound distortion, vertigo spouts, fatigue, nystagmus, and other various symptoms. It's a neuro-physiological disease. Stress, dehydration, loud noises, etc. can trigger vertigo and other symptoms. I've had it since I was 20. I am out of remission for a good while now so I'm going back through a full testing assessment. My ENTs specialize in this inner ear disease, but most doctors are uneducated about it. I also developed TMJ despite 6 years of oral ortgodontry and peridontry. Next docs to see are: Otarologist, Immunology, Endocrinologist, and Neurologist (temporal bone scan to check for SCDS)

    Perhaps you don't have what I have, but it's a fairly unknown disorder that's just being realized by the medical community. Look into it, it's worth a shot to maybe guide your doctors to check into it.

     
    The Following User Says Thank You to AreGee For This Useful Post:
    OnlyOneSky (04-15-2016)
    Old 03-02-2016, 01:04 AM   #6
    Mg2121
    Senior Member
    (female)
     
    Join Date: Aug 2015
    Posts: 298
    Mg2121 HB UserMg2121 HB UserMg2121 HB UserMg2121 HB UserMg2121 HB UserMg2121 HB User
    Re: Autoimmune Inner Ear Disease

    One person here mentioned their experience with menieres and I wanted to add to that. On top of the medical treatments for this, I know that my friend also sees a nutrionist that specializes in such and changed his diet. I do not know specifics on it however it tremendously has improved his symptoms. Once you find out what is wrong with you maybe that's another avenue for you to look into. I wish you luck with this.

     
    Old 04-15-2016, 09:58 AM   #7
    OnlyOneSky
    Newbie
    (male)
     
    Join Date: Apr 2016
    Location: Brooklyn
    Posts: 2
    OnlyOneSky HB User
    Re: Autoimmune Inner Ear Disease

    I had rapidly progressive, bilateral, mimicking SSHL to some degree. I was given an ECOG, yes; however, it and other tests seem to disprove that I have SSHL (which I had about five years ago); SSHL has a very specific action on audio frequency reduction that makes it quite a different experience, that I remember.

    In any case, there are a few other layers that make me question the tentative diagnosis of AIED: my tinnitus, in both ears, is (now) out of control, changing almost hourly (although this could be because of AIED); soft sounds are too loud, loud sounds are unbearable, and in general I have problems “making sense” of sounds—what they are and mean; compromised hearing and audio processing articulation (and though the clumsy tests I have had so far do not corroborate it, I know I am right, having been a musician for 50 years and having done audio engineering for half that); the one-year “ramping up” to this blowout of my hearing was an ever-escalating pattern of dizziness and vestibular problems from merely general movement of my neck and head; over the same year I experienced an ever-escalating increase in cognitive and logic impairment; experiencing a sort of “fullness” at the back and base of skull for months, what felt like inflammation spread out over (but under) much of the back part of my scalp; and yet, for the most part, the recent administration of 60mg/day of Prednisone, 20mg per cap, was somewhat like a miracle cure: it made half of these symptoms go away almost completely (although the tinnitus and hearing problems remain, diminished by only about 1/3). Finally, for lack of a better term, I have the sensation of self-perceived (disruptive) “cranial aura” that seems created/triggered by my hearing (or inaccuracies of same).

    Unfortunately, I did not have the funds during the past few months. I went with an ignorant, inferior ENT that my insurance covered and was consequently on three different, low-dose Prednisone regimes during two months’ time (a big no-no; you’re supposed to be slammed onto 60mg/day for 1 month and then tapered, that is what everyone who understands AIED agrees upon).

    Frankly, conducting my life has become very difficult. I have to wear earplugs everywhere (-20dB), can’t listen to music anymore (any volume above the level of the refrigerator is too loud, and in any case music just sounds like a big, unintelligible morass). So I am unbelievably lucky to currently have a very low-stress job where there is almost zero verbal interaction with others. It doesn’t matter that my hearing is messed up; in fact, some of the people have far worse hearing than I do (even with their hearing aids helping them).

    Prednisone seemed to be quite effective the first two courses of it I took; but now, no longer so. Like Melisande1, I have begun to hear some new, high-pitched tinnitus in one of my ears. (When I clench my teeth on that side, the ringing changes. I have no idea what that means.) I am not yet at the point of having problems understanding TV shows, but am very close. It’s hard to tell because I started using close-captioning 20 years ago back when my hearing was fine.

    I really wish these doctors would stop trying to rely on tests to prove stuff. I KNOW my hearing is messed up. I am the best judge of it, having worked in audio and music for 50 years.

    At this point, I am not yet sure that it’s AIED. The dizziness and cognitive impairment that I had for a year leading up to this…I don’t know whether it’s relevant or not.

    One of the biggest problems is that I have is people to discuss this with. There are currently very few threads on forums on the internet that focus on AIED.

    Last edited by Administrator; 11-07-2017 at 09:03 AM.

     
    Old 04-15-2016, 10:01 AM   #8
    OnlyOneSky
    Newbie
    (male)
     
    Join Date: Apr 2016
    Location: Brooklyn
    Posts: 2
    OnlyOneSky HB User
    Re: Autoimmune Inner Ear Disease

    I have drastically reduced salt and am taking 2,000MCG of B-12 3x/day. Have no idea if this will help or not, however.

    Last edited by Administrator; 11-07-2017 at 09:03 AM.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:36 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!