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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.
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.
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.