This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello to all. I do not have MS but have Ehlers Danlos Type 1. Can anyone tell me if feeling my heart beating in my left eye (eye pulse?) has to do with CCSVI? This began six months ago and I have had MRI of brain etc which they say is "fine." (EDS has a major vascular component to it) - I have been to all my specialists and they all say they have no idea why I feel my heart beat in my eye (pulsations). I can feel (and also see it pulsate when my eyes are closed) it when I am in a closed small room such as the bathroom, but it is always there. Is this a narrowing of a vessel, how serious is this?? Does anyone else have this? Thanks for any and all info --- Sincerely, Huey

See DrDiana by PM, or on her site http://www.prettyill.com/ .

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

welcome huey

fyi:

A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19807.html#p190867

EDS diet info (w caveat re food elimination diets)
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19807.html#p190869

question: have you had any of these levels checked?:
serum zinc, copper, calcium, magnesium, 25(OH)cholecalciferol, vitamin K, ferritin.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Welcome, Huey. I haven't heard of eye pulse before but that would drive me crazy rather quickly. I don't know if it has anything to do with CCSVI, unless you were to get CCSVI treatment and it stops. The veins that drain the eye drain eventually into the internal jugular veins, which are the veins commonly found to have outflow obstructions in CCSVI patients. I had vision improvements and comfort improvements in my eyes after CCSVI venoplasty. I do not have Ehler Danlos but I have MS, pars planitis, and optic neuritis.

Okay so its not just me. I had similiar stuff like that *after* treatment and especially when on the blood thinners. I could "see" my pulse and it felt like my eyes bulged with each beat, very unnerving, Dr. Dake didnt seem to know much about it, but perhaps my description was inadequate. Those blood thinners had me feeling weird the whole time I was on them, I still get that every now and again, *especially* if adrenaline is surging or am in a stressful situation. Since its not observable, and infrequent (now), just thought it was due to temp blood pressure spike (which is usually low end of norm). Wish I had more than that for ya, but do know exactly what you are talking about, and it is noticeable regardless of eyes open/shut. Sometimes it is scary but since it (logically) seems tied in with the pulse, I dont know how that might dovetail with changed flow on the venous side.

Mark

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

thanks for all who wrote! I sincerely appreciate all your suggestions and Mark, thanks for making me feel I am alone with this problem! I have all of the time eyes open or closed. I see a dr. tomorrow so will see what he says. Dr. Diana of www.prettyill.com is one of few who is working on this. thanks again Huey