Does anyone else have this problem?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Does anyone else have this problem?

Postby dania » Tue Aug 31, 2010 8:55 am

I wonder if anyone else has noticed that they have to look up in order to do anything? If I tilt my head down ( keeping my body upright) I lose all my strength. When I was able to walk I noticed that I was always looking up at the ceiling, if I looked down I was unable to walk. I have recently come across one other person with the same problem.
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Postby BadCopy » Tue Aug 31, 2010 9:15 am

I find my vision is better as far as jittery when I tilt my head back look at an elevated angle. It does not affect me to the extent of strength though.
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Postby grant » Thu Sep 02, 2010 9:28 pm

I was at my neuro's a week ago and he talked about something very similar being common. I don't recall what he called it, but it sounds like something to talk to your dr about.
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Postby Algis » Thu Sep 02, 2010 9:31 pm

I experienced that too before. With my head tilted backward; I could extend my right hand's fingers completely. But now they all paralyzed so it doesn't help anymore.
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Just something weird I do to alleviate neck/head pain

Postby mag00 » Sat Sep 04, 2010 9:09 am

For 20+ years I've suffered neck pain as well as headaches.
I've always felt the need to rock my head left and right when I'm
in the supine position. Even sitting back in a chair with my neck
resting on the headrest causes me to do this. It lessens my pain
but makes me look like an idiot. lol.

I wonder if all that movement might be forcing blood to flow through
my IJV's? Similar to how the muscle contractions in the legs force
blood flow back up to the heart.

I've done this for so long it is now an automatic thing I do unconsciously.
Which concerns me as I may one day require stents in my neck.

Just throwing this out there.

my info: Diagnosed RRMS 1989. Diagnosed SPMS 2010.
Diagnosed CCSVI 2010 (4/5 criteria met)
Little physical disability.
Greatly suffer from pain/nausea/exhaustion/cogfog/etc

Never took dmds. Only used steroids during exacerbations.
Have been using cannabis throughout my illness with great results.
On a waiting list for CCSVI treatment. Hoping it might reduce my
pain or other symptoms. Perhaps even stop my brain atrophy.

Thanks for reading.
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Postby blossom » Wed Sep 08, 2010 3:34 pm

since i am one that has experienced this tilt your head back and you can move better i'd like to keep this going. although just like another as i have gotten worse there is less effect. but still it is there especially when laying down. we may have a whole other blood flow issue. too many questions with too little answers.
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