Hello and help

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

Hello and help

Postby Huey » Fri May 11, 2012 1:25 pm

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
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Re: Hello and help

Postby 1eye » Fri May 11, 2012 6:34 pm

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

Postby jimmylegs » Fri May 11, 2012 6:46 pm

welcome huey


A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements

EDS diet info (w caveat re food elimination diets)

question: have you had any of these levels checked?:
serum zinc, copper, calcium, magnesium, 25(OH)cholecalciferol, vitamin K, ferritin.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Hello and help

Postby Cece » Fri May 11, 2012 6:49 pm

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.
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Re: Hello and help

Postby CureIous » Fri May 11, 2012 10:25 pm

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.

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Re: Hello and help

Postby Huey » Sun May 13, 2012 7:56 pm

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
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