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Possible AIED--could use some advice

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Old 01-19-2010, 08:11 AM   #1
Join Date: May 2009
Posts: 3
hollygolightly7 HB User
Possible AIED--could use some advice

Hello, all.

For easier reading, I'm chunking this's a long, sad narrative

My history
My ears always closed up when swimming--as a kid and as an adult. I had a horrible ear infection in 2000 (right ear, I think) from swimming--the eardrum burst, I now realize, but the ENT didn't see it at the time. I was put on drops. I recovered. I have had what I now know is pulsatile tinnitus in (I think) both years for at least 7 years, probably longer. Maybe a result of the ear infection in 2000?

I have severe dust mite and ragweed allergies. I am on zyrtec for this. I am only just starting to get immunotherapy for it.

The trauma
Last year, I had 2 terrible head colds in a row with lots of ear pressure, went to a concert, stood too close to a speaker, and lost some hearing in my right ear. I went to an ENT who (and now I know this is a common mistake--and I also now know why people file malpractice suits) thought it was eustachian tube dysfunction and told me to wait it out. I was a musician. This was difficult to accept. Long story short, I then *actually* got an ear infection, my eardrum burst, and I got a tube put in with Sataloff's office but couldn't get an appointment to actually see Sataloff until September.

The results
He ran a bunch of tests, and what came up is this: "HLA typing revealed the presence of Cw7 and the absence of DR4. The test showed two of the four markers associated with autoimmune ear disease. Western blot for cochlear antibodies was negative...but has a false-negative rate of at least 30%...Abnormal blood tests included cholesterol (high, 219." I have mild loss on the right at 12,500hz and moderate in both (!) ears at 16,000Hz. There is some mucosal thickening on the right side shown by MRI, etc etc.

The tube is coming out; my eardrum seems to be functioning normally on that side; there is still hearing loss. However, I have noticed pulsatile tinnitus increasing in my left ear over the last few months. A few weeks ago, I had a lot of sinus and ear pressure and some pain on that side--once again, went to Sataloff's office but couldn't get in to see him (this happens on Tuesday, finally), and as usual, they said my hearing on that side was fine and prescribed me a nasal spray. Which didn't help anything. I had been on chinese herbs at the time and went off them--as soon as I went off them, the symptoms seemed to subside. That said, I notice that I am maybe a little dizzy at night and that it's hard to look at my computer for too long at my desk. While I read "silently" just as quickly as ever, I am stumbling over words more reading aloud than I ever used to. This probably isn't noticeable to anybody else.

For those of you who have AIED, is this how it progressed? What are the signs they don't tell you about on the websites? Could my zyrtec be ototoxic? Most importantly, how do you function? This is really really hard on my boyfriend, because not only am I in mourning for my singing career, I'm also constantly wondering when the next shoe will drop.

Thanks for listening...


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Old 03-20-2011, 05:27 AM   #2
Join Date: Nov 2008
Location: Australia
Posts: 6
di999 HB User
Re: Possible AIED--could use some advice

I hope you are feeling better by now. Zyrtec does indeed have many and numerous side effects. Anyone with hearing or tinnitus problems would do well to consider Zyrtec as a possible cause.

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aied, autoimmune inner ear disease, hla

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