Bizzarre balance and hearing perception problem

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 orlooking at moving objects.

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 (Meniere's)or middle ear problems). This especially occurs when riding in a car.

Extremely high pitched and distorted ringingtinnitus (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 greatly appreciated.

Sorry for the long post.


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

Mike

[lc]

Hi MIke
Well you have some very common symptoms to me.And I do have MS...for the last 3 years.But I also have Crohns disease...very similar to UC.I am now not on any saliycates,as my taking of interferon has put my Crohns in remission.
My Neuro thinks I am barking when I complain of balance disturbances which are on and off all the time.Some days its real bad and is with me all day.So get nausea as well.
In addtion I have the hearing disturbances you outlined.Its not painfull just uncomfortable.Its like some one is playing around with your hearing controls in terms of pitch and volume.With plenty of background noise.
On the eyesight front I have problems getting perspective and also I have black floaters,soreness,itchyness,blurring and sometimes when I look at a line it has a bump in it like a ECG chart.Again a incideous complaint.
I also get little blisters and bumps on the eyelid rim.Which feels like cut glass....the neuro even went so far as to say I was imagining things and to take a photo(As I never have one when I see him!Typical) He has asked me to take a photo.....have you ever tried taking a photo of your own eye!.
On top of that which really hit home,is the sporadic periods of horrible vile mettallic taste that I get in my mouth.....and before any wise guys say its due to taking steriods....I havenot had any for 3 years.And I will be dragged over hot coals before having them again.But that said the taste is not to dissimiliar.
So Mike......I know where your coming from....the bad news is I have not found any solutions to these problems.So keep me posted.
One thing I would say is the saliycates that are taken for UC can over time cause complications like skin bumps and rashes....and balance disturbances to name but a few....suggest you read the contraindication sheets.
Best of luck

Thank you for your reply. I was originally diagnosed with chrons, and maybe that is what it really is. This is the first neurological link to IBD that I have found (my GI is an IBD expert and he has never seen what I am having in any of his patients). I'm very sorry about your problems. I am having almost the exact same symptoms you are--wierd sensory disturbances. The eyelid thing for me is the blepaharitis. It sounds very similar to what you are having. Have an opthomologist check it out for you--it is very treatable. I get all sorts of transient and fixed disturbances, and my neurologist thinks I'm a nut (he's called my an interesting psychiatric case before). I get a lumbar puncture next week (merry christmas!), maybe I will be finally diagnosed. I hope it's something like Lyme which is curable, not MS (although they probably wouldn't call it anyways, because I have no plaque), but I would like to have a diagnosis, even if it is an awful one. Thank you for your email. I really appreciate it.

Thanks,

Mike

[lc]

Hi
Hope the Lumbar puncture went ok.I know that it is a trying time whilist you go through all the tests and heartache of what might be.
Interesting your comment on the crohns.
I would say that here in the uk of the 400 people on Interferon. 3 of us have Crohns....and all 3 of us have gone into remission of our crohns!!!!
Every time I pick up any of the MS magazines....you find articles on different people and their problems.....but what keeps jumping off the page at me.Is that a surprising large number of them have crohns,IBS or ulcerative colitis.
Why??????
I truely think that a bit of research is required.Particularly as MS is often linked to leaky gut.Well that said research is required in a lot of autoimmune diseases.
I note that you have a clean MRI.It is important to note that sometimes plagues donot show up due to over the counter medicines making them invisible to the MRI.This has only recently been recognised.So much so that here my hospital is redoing certain MRI scans in negative patients as a result.
I am trying to be informative not negative.You will get to the bottom of all this ,but it will take your persistance.In the mean time live life to its fullest.I know its difficult at times,but no one is going to wave the magic wand ,so I figure push on and do what you can.
love and best wishes for chrimbo(xmas)
LC