Mr. Mike

I need some help and advice! I am having a strange bilateral distortion of hearing without any measurable hearing loss. In fact, if it wasn't for the distortion, my hearing would be perfect. I have flat, even
audiometry around 10dB (+ or - 3dB) from 250Hz to 12,000Hz. Actually, the frequencies above 8,000 Hz are even better than than 10dB, almost at 5dB, so the problem I'm about to describe is truly bizzarre. I have done the hearing tests about 10 times over the past 6 months and everything stays the same (problems have gotten really bad as of October). I have consulted an ENT, otologist, otoneurologist, and 2 regular neurologists with no luck or
resolution. Here are my symptoms:

Very unsteady dizziness (like swimming or walking on a boat) that waxes and wanes, but is always present. (Ear doctors say it is not vestibular--no spinning vertigo or nystygmus, and head shaking normal. Neurologists not as sure about that analysis). I do have diffuculty with my eyes seemingly bouncing aroud (ENT's say they do not), especially when walking. Having trouble focusing eyes, occasionally two eyes sync slowly when moving near to
far and vice versa.

Tightness of sides of my head and face along with dizziness. Tension headaches that cover most of head, come on for no reason.

Sometimes pain and fullness in ears (Doctors say that pain must be referred from the tightness, since there is no good sign of hydrops or middle ear problems). This especially occurs when riding in a car.

Extremely high pitched and distorted tinnitus (both ears).

Distortion quality (both ears): Everything sounds like coming from a broken speaker (everything "squaks"--like the teacher from Charlie Brown) connected to a CB radio. Almost like someone stuck a couple of kazoo's in my ears--fuzzy, buzzy like a bee, distortion. The distortion is constant, but
some days it is slightly better than others. I can still pass the word recognition test, but it has become increasingly difficult. I have lost the
enjoyment of music--a very important part of my life since I play the piano. Extremely high frequencies (above 8,000 Hz--like cymbals) and bass frequencies seem pretty clear, it's the middle frequencies (especially upper middle) that seem most distorted. Left seems more distorted than right, but I have better word recognition and slightly higher sensitivity on left)

I have explored the TMJ route for the headaches, but does not look promising. I'm even looking at Candida as a possiblity, I'm so desperate!

I do have active ulcerative colitis (very mild--only proctitis), and had bell's palsy on my left side last March (recovered in a month). Current MRI is clear of any abnormality whatsoever anywhere in the cranium. Acoustic reflex is normal. Blood work for everything (lyme, thyroid, sarcoid, etc.) is normal. They have not done any balance testing. I have tried the ABR
test twice, but the uncontrollable muscle tension in my head gives off too much distortion on the test. They are going to do it again with me sedated, it is that bad. My current otologist thinks I'm being poisoned by some toxin and he feels that it is definately central (i.e. in the brain, maybe in the VIII nerve) and NOT in the cochlea/vestibular organs (says that the
cochlea is very sensitive--if something went wrong you would see some loss somewhere at some time). I'm not as confident. Oh, did I mention that I am getting an off- taste on the left side of my tongue (bell's palsy trying to come back). I do have history of moderate salycilate (5-aminosalicylic acid
for colitis) and Doxycyline (for posterior blepharitis, i.e. Ocular Rosacea), but they don't seem related to this problem. I stopped all medication 2 months ago and the problems continue to get worse. Neurotologist says this may be a referred phenominon related to the tension in my head and face. He is an expert an autoimmune inner ear disease as well and said that this is not it.

Needless to say, I am miserable, depressed, and scared. My eyes are getting bad again because I'm off the doxycycline--so I'm going blind AND deaf at age 29. Is there anyone out there that has similar problems, any advice, any help? Maybe a possible explanation? Any help is greatlyappreciated.
Sorry for the long post.

Thank you very much for your time reading this post--it is greatly appreciated,

Mike