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mom*2*meghan 10-21-2007 07:19 PM

Unexplained tinnitus, dizziness, nystagmus - Any suggestions?
I am trying to help find an explanation for my father. He is 61 and has had the following symptoms:
* extreme dizziness. It starts when he gets out of bed in the morning and gets progressively worse. There are times he has to stop what he is doing bc his eyes are bouncing up and down so bad. He was diagnosed with downbeat nystagmus, but the doctors have not been able to find a cause.
* Tinnitus
* Bouncy vision
* Blurry vision
* Intermittant double vision
* He still surfs and finds that his symptoms do affect his balance when surfing, but other than that and some balance issues from the dizziness, he has no balance problems
* Maybe a little short term memory loss
* Some forgetfullness
* Some mental and/or physical fatigue out of proportion with his acitivity
* Left knee arthritis
* some shoulder issues, which he feels are not related to his other symptoms...rotator cuff problems that wil require additional surgery

He does not have:
* Vertigo
* Hearing loss

He has been to his primary care doctor, a neurologist in Edison NJ; a neurologist, ENT, and one other doctor at Thomas Jefferson University in Philadelphia. He has had several MRI's, balance chair tests, hearing tests, posturography/platform test, MRA (?), blood work done. All have come back normal. As I mentioned, the only thing the doctors can diagnose is the downbeat nystagmus. They have also ruled out Meneire's disease, and did not see any abmornalities on the MRI, including acoustic neuroma.

He has tried a few medications such as klonopin, phenergan, and one other anti anxiety medication, all of which have not helped at all. He takes a multivitamin every day, B complex supplement and I think a magnesium supplement. He has become more and more depressed, frustrated, and anxious with a lack of explanation for his symptoms, which have gotten progressively worse over about the past 5-7 years.

Does anyone have any suggestions as to what he might try next?

KeelaC 10-22-2007 06:33 AM

Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?
The only test you didn't mention was a cerebral angiogram. Perhaps he's had one because I think that would be pretty routine in his case.

curmudgeon 10-22-2007 10:22 AM

Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?
Clearly your father has seen good doctors so I guess that's a comfort. But even good docs sometimes have trouble diagnosing unusual things. And in your fathers case it might be that his symptoms are less when he's actually being tested. It can be really hard to diagnose something that comes and goes because unless you do just the right test at just the right time everything looks normal.

I ran nystagmus up on ****pedia and it lists a bunch of causes. Stroke jumped out at me because of your fathers age.

Is it possible he's had small strokes, like TIAs, over the years? How's his blood pressure? It also mentioned MS but I think that is usually diagnosed much younger.

I assume they have ruled out any kind of tumor. Has he had a CT? I know you mentioned MRI but they do show different things. MRIs are really good for diagnosing some things and not so good for others.

Is he taking any herbal type meds? Over the counter stuff or something homeopathic? Sometimes these things can interract with prescribed meds and because they are over the counter people don't tell their doctor they are taking it.

Also, does he drink? Long term use of alcohol can cause all kinds of havoc in the body. Even someone who is never drunk, but drinks every day, can be doing long term serious damage to their body.

Perhaps none of this helps you and for that I'm sorry. I know from first hand experience how frustrating it can be to go years and years before finally finding out what is causing something so I wish I could be more help.

Heavenfruit 10-23-2007 08:00 PM

Re: Unexplained tinnitus, dizziness, nystagmus - Any suggestions?
Sounds like lyme disease, but obviously it could be a lot of other things considering his age.

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