Discussions By Condition: I cannot get a diagnosis.

hearing loss

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: cookiee93
  • December 14, 2008
  • 04:46 PM

Hi. I hope someone here has some ideas or feedback. June 2001 I developed severe vertigo and was in the hospital for a week. All blood work, imaging tests were negative. Docs told me that I had a weird virus. My hearing in my left ear was diminished. I was released from the hospital, it took a while for the vertigo to go away entirely. My hearing came back and then I became deaf in my left ear. About a year later the hearing in my right ear started to drop out. Since then I have had about 6 episodes of flucuating hearing in my right ear. Up until late May 2008. the hearing in my right ear was not soo bad, hardly used my hearing aid. Hearing came back in my right ear in September and just went out again two days ago. My speech discrimination is horrible. I took pred for two months and have had decadron shots, water pills. Also taking methotrexate and enbrel. My hearing literally fluctuates hour by hour. The other night I was able to talk on the phone. tonight I can barely understand my husband. I have also lost volume this time around too. It is so scary knowing that I will eventually be deaf. I had a cochlaer implant on my left side in the hope that if/when my right ear goes that I will have the cochlear but so far it is just so noisy to me and I have less speech discrimination then in my right ear. I also have roaring tinnitus in both ears and osolopsia (sp?) and hyperacusis (sp?). I am not sure if this is auto immune inner ear? a mutant menieres? I am 35 years old and have a five year old son w/autism. I need to be able to hear!!! Any thoughts or comments would be appreciated. In addition, I have balance problems now due to the problems in my ears, lately noticed that after using hands for a while I tremor in my hands for a bit and also when getting my haircut when the scissor gets near my face I have an uncontrollable tremor in my face. Prior to getting preg, I had hashimotos thyroiditis but since then all my thyroid levels are normal. Has anyone heard of repeated episodes of hearing decline? Thanks for reading and good luck to everyone on this site.

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3 Replies:

  • I'm not an expert, but I wonder if anyone has thought about autoimmune hearing loss: http://deafness.about.com/cs/etiology/a/aied.htm
    aquila 1,263 Replies
    • December 16, 2008
    • 08:05 PM
    • 0
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  • thanks for the input. my ent thinks that i have a component of the aied. the enbrel and methotrexate do not hold off attacks (those are anti immune drugs) and i had previously gone thru rounds of pred and steroid injections in the ear with no results. i have once gone without any steroids for two months and then got myhearing back. it is so scary each time my hearing goes out in my ear because i dont know if or when my hearing will come back. i have a five year old son with autism who just became verbal this past summer. i HAVE to hear him talk. this is a nightmare.
    cookiee93 1 Replies
    • December 17, 2008
    • 05:31 PM
    • 0
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  • why are you taking methotrexate and enbrel? These are very strong and dangerous drugs. Do you have RA? Please try acupuncture to help get your hearing back. It works! Best wishesDOM
    acuann 3,080 Replies
    • December 19, 2008
    • 03:40 AM
    • 0
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