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Old 05-08-2013, 05:15 AM   #1
Join Date: May 2013
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Olivieplants12 HB User

6Blues posted this in 2005...I just found this in a search and was like, wow! someone had what I have! Except that I don't have Lyme that I know of....I just copied and pasted her post since it was a ditto. I have been to ophthalmologist/neurologist had 2 MRIs of the brain, one orbit of the eyes and one of the cervical. I have also seen an ENT, had every vestibular test there is. All this was done at the Center for Advanced Medicine at Washington University in St Louis. I have one more test to be done in a research lab at Wash U, called head thrust. If there are no findings I can either "try" some meds for cluster migraines that have no pain...not interested in being a guinea pig for meds...or go to a doctor in Baltimore.

I have 12 children, eight still at home, my baby just turned 4 and has Down syndrome and I home school. I am passionate about my family and I need my health! These symptoms make you want to sit and close your eyes and do nothing, which I have never done btw. I just keep moving, going to appointments and coming home with no diagnosis. My other symptoms that 6Bluesdidnt mention are numb lips and chin. Other than that, below is a copy and paste of her post 8 years ago. Are you still the 6Blues? Did they find your problem?

When my head is moving (walking, driving, brushing my teeth, etc) my field of vision jiggles (oscillopsia). Have you ever seen a home movie where the motion control was off? That's what I see 24/7. It's HORRIBLE!

Everything I see is in perfect focus. I see no auras, no lights, no moving dots or fuzziness. This jiggling is the most annoying, exhausting little devil. I have 100% neuro Lyme so it makes sense that my vestibulo-what-cha-ma-call-it nerve could be infected.

Normally, the cause of oscillopsia is due to inner ear problems. That's why I
went to an ENT last year but my results of tests for inner ear problems showed nothing wrong.

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Old 05-10-2013, 03:27 PM   #2
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6Blues HB User6Blues HB User6Blues HB User
Re: Oscillopsia

Hi Olivieplants12. I will reply to your post tonight. Hang in there!

Old 05-10-2013, 04:23 PM   #3
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6Blues HB User6Blues HB User6Blues HB User
Re: Oscillopsia

Greetings olivieplants12, 6Blues here. A good friend told me you were looking for me. :-)

I am very sorry to hear that you suffer from oscillopsia, it's just the worst! I know exactly what you mean that you want to just sit and close your eyes. From my experience as a patient, here is what I have learned.

Normally, our skull is in motion all the time: when we walk, drive, stand, etc. Even our heartbeats can move our skulls a teeny tiny bit. This motion is normally cancelled out by our brains so we aren't aware of it. This is called gaze stabilization. It's also related to the vestibulo-ocular relfex, or VOR. This process is really complex and involves the muscles, bones, nerves and the brain.

In my case, Lyme disease broke my balance nerves on my left and right sides, causing bilateral vestibular loss. This means I completely lost my sense of balance and my gaze stabilization mechanism. Not knowing what was happening was awful and trustme, I was a wreck! I went from doctor to doctor, getting poked, scanned and evaluated. I had plenty of scary dead ends, but no real answers.

My diagnosis took years because doctors were stumped by my symptoms. I had many misdiagnoses before I got the correct one.

Eventually I was referred to Penn University Dept of Otorhynolaryngology. (That's a mouthful!) I had health insurance at the time so they put me through every test they had. I looked for my test results so I could give you the name of the tests, but I can't find it, sorry. I will describe what I remember here so you can ask your doctor about them. There was a test where they recorded my eye movements with special goggles while they squirted very hot and very cold water into my ears. There was a test where my eyes movements were recorded while I sat in a spinning chair in a small room with black & stripes on the wall. And there was a test where I stood in a complete body holster while trying to balance on a moving platform.

The tests proved that my balance nerves were completely gone on both sides, and this is what caused my oscillopsia. My vision was fine, but the nerves that are supposed to cancel out this motion were broken, so every time my skull moved even a teeny tiny bit, I saw motion. Driving was the worst! When it was bad, I could see my TV screen jiggle in time to my hearbeat.

You may not have nerve damage from Lyme, but it sounds like you have some cranial nerve damage that has broken your VOR and gaze stabilization. The good news is that there is hope.

I suggest you find a good physical therapist who has experience in gaze stabilization therapy. I was able to walk and see clearly after just 4 weeks of therapy! I am a very determined person, so when my therapist assigned me exercises to do, I did them morning, noon and night. I always did more than they asked, so my therapy was very successful.

The therapy was not physically hard, but since you are re-training your brain, it is mentally exhausting.

Good luck and please feel free to private message me or ask any questions.

Peace and health to you,

Last edited by 6Blues; 05-10-2013 at 04:25 PM. Reason: spelling

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