AustenFan...Hearing Loss

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Date Joined Apr 2005
Total Posts : 17056
   Posted 9/10/2008 12:48 PM (GMT -6)   
Austen, I have autoimmune inner ear disease.  My body is attacking the nerve endings in my ear.  I am profoundly deaf in the high ranges and am considered legally deaf.  Ninety-six percent of speech is made up of high sounds so hearing people is my biggest challenge.  I do hear low sounds but can't understand speech, hear my smoke alarm, water running or overflowing on the stove, birds, etc.  The sound is totally nonexistant to me or extremely distorted. 
My hearing dropped off in chunks...not just a little at a time.  I have stabilized and I really pray that I won't lose any more hearing.  I have to lip read to understand speech.  I hear someone talking but can't understand what they are saying without using lip reading.
I do not have any dizziness with this and am not sure if I might down the road.  I ended up with the diagnosis by going to the Cleveland Clinic.  There is a specialist there that deals with autoimmune inner ear disease.  They also could tell by blood work.  He had me try megadoses of Prednisone (80 mg a day for a month) to try to stop the progressive loss, but it didn't work.  I am a candidate for a cochlear implant but am not ready for it, personally.  They are making great strides using adult stem cells.  They are growing new nerve endings in mice right now!  So, there is hope for the future and I truly believe that I will hear again.

Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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Date Joined Aug 2008
Total Posts : 1771
   Posted 9/10/2008 1:38 PM (GMT -6)   
I'm so sorry about your hearing loss.  I've experienced some, but mine is slowly progressive and in the lower ranges.  I have trouble understanding people with low/monotone voices.
I don't "spin" as much as I used to, but I do have trouble with balance.  I also have a lot of trouble with visual stimiuli (flashing lights, striped wallpaper, etc) and anything that disrupts balance, like uneven floors.  My inner ear is damaged and the balance signals it sends don't jive with the signals my eyes send to my brain, so I feel off  balance a lot. 
I've learned to compensate for some of it (like a skater learns how to "spot" when spinning), but it can be pretty hard sometimes.
I'm hopeful that my hearing loss won't progress, but if it does, like you I'm also hopeful that there will eventually be something that can be done. Adult (non-embryonic) stem cell research is a marvelous thing!  :-)
"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

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