CCSVI symptoms...besides MS?

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

CCSVI symptoms...besides MS?

Postby healthymama » Thu Nov 19, 2009 9:56 am

So I have connected some of the sensations I have had for a while with CCSVI and wondered if anyone else has the same symptoms/sensations?

I have felt these as long as I can remember and never mentioned them because I thought it was normal. Come to find out my husband and everyone else who is "healthy" that I have asked does not.

I have not been tested for CCSVI, but I do have MS, so I believe I do have it.

1) Whenever I bend over a lot, like to pick up my kids' toys, I feel like my head is full of blood, more heavy headed than light headed. Now in the context of CCSVI I feel it takes a while for the blood to drain.

2) Every once and a while, like twice a month, I get a fizzy sensation up my neck, little popping bubbles, like they are going in the wrong direction.

3) Less frequently, I will get a gushing warm feeling up my neck and feel that warmth pool at the back of my head.

Do any of you have these sensations? Am I wrong to connect them to CCSVI? Do any of you have odd sensations that you have now linked to CCSVI? For those of you who have had stents put in, do you no longer have sensations like this? Thanks!
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Postby zap » Thu Nov 19, 2009 10:38 am

I experience #1 for sure.

Should note that when I was having my first episode, I thought it was something to do with blood pressure, because I could feel and hear my blood just pounding in my head when I took a hot bath.

Also, not sure if this might be related to my jugulars being (perhaps) pinched, but I also have problems with my neck vertebrates I think - never been to a doc to check it out, but I can hear/feel a grinding sensation sometimes when I turn my head, and I regularly "crack" my neck by pushing my head forward and up from the back, it sounds creepy but feels good. And as noted elsewhere, I have "lost cervical lordosis" - the normal curvature of the neck is gone.
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Postby kinga » Thu Nov 19, 2009 10:52 am

I have #1 and #2 and also as long as I can remember very strong heartbeat-I can feel it,I can hear it, I even can see it 8O like when I have long necklace or something like that on my chest I can see it hopping along with my pulse-I'm a real weirdo :wink: it all happens when I'm calm and relaxed, don't need to exercise to have this
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Postby ErikaSlovakia » Thu Nov 19, 2009 1:22 pm

I am sure I had the heart beating - just sitting and doing nothing and my pulse was 130.
Since the procedure it is much, much better.
I still feel it sometimes but for sure not that often and not that stron.
My BP right now is 121/74 and pulse only 72 8O
Well, I know it is perfect, but not normal for me for sure.
Before I had to check this twice a day and take some pills. Now it was only second time since I came home from Poland that I checked it.
I only took 5 mg Lisinopril in the morning and 40mg of Isoptin - it controls my pulse in the morning. It is 21:22 PM here.

Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ozarkcanoer » Thu Nov 19, 2009 1:38 pm

Starting in July of 2007 I have had horrible symptoms that I call "hot-head". It would feel like my brain is on fire. I was in terrible distress. I started putting ice packs on my head and neck. I could not sleep. I feel pressure at the base of my skull. My husband squeezes my head like a vise and I massage my head and neck with my hands and knuckles for some relief. I would feel as if I hadn't slept for days and I would cry uncontrollably.

I have had a span of about 5 weeks, this summer, when I was "normal". Then it all started up again but with the added benefit of terrible headaches. Now I have good days and bad days.

Needless to say my neurologist doesn't have a clue what to do to help me. I have tried all the medications. I am on a bunch. Psychiatrists tell me I have an anxiety disorder. Maybe I am a nutcase.:cry:

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Postby Cyclops » Thu Nov 19, 2009 3:32 pm

#1 and #2 for me.

I remember as a child doing handstands and my face would be bright red and everyone else would be fine.

I get that bubble thing in my neck - it just lasts a second, a bit like a muscle spasm.

Not sure what the bubble feeling might actually be - I doubt very much it's actually bubbles. Maybe GiCi would know if there's anything that could cause it. Can veins spasm?

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Postby HappyPoet » Thu Nov 19, 2009 4:31 pm

Cyclops, yes, veins can spasm -- it's called vasospasm and can lead to vasoconstriction of the blood vessel causing reduction of blood flow; it can also cause ischemia and necrosis of surrounding tissue.

I was thought to have this problem deep within the visual cortex of my brain when I went completely, temporarily blind in one eye; however, the blindness was determined to be caused by something else MS related.

Edited to make corrections
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me too

Postby Cyndiloohoo » Tue May 11, 2010 4:13 pm

have been telling my neurologist for 2 yrs about: head full of blood, hearing it in my ears, feeling it behind my eyes, watching my hair move with 130+ pulse, pooling at base of scull causing pain. it is so nice to know im not the only one! I want to have an angiogram or doppler or whatever it taks to diagnose the blockage.
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Postby annad » Tue May 11, 2010 6:18 pm


yes to #1 and #2

and loud/strong heart beat
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Postby nicko » Tue May 11, 2010 11:44 pm

kinga wrote:I have #1 and #2 and also as long as I can remember very strong heartbeat-I can feel it,I can hear it, I even can see it 8O like when I have long necklace or something like that on my chest I can see it hopping along with my pulse-I'm a real weirdo :wink: it all happens when I'm calm and relaxed, don't need to exercise to have this

Same thing here #1 and #2. I also have the very strong heartbeat. Even if i'm laying down resting I can see my belly jump with each heartbeat.
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Postby skincoll » Wed May 12, 2010 3:43 am

Number 1 yes. I have always got a really red face after bending over head-first, even since childhood.

Also, I get pins and needles creeping up my back and left side when I put my chin on my chest. Anyone else get that too?
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Postby Cyndiloohoo » Wed May 12, 2010 9:51 am

I do get the pins & needles & nausea from pain when I move my neck. strange thing is if I could just float in the cold ocean 24/7 i would be better. it must take all the swelling down and im sure the weightlessness doesnt hurt either.
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Postby jen-jen » Wed Dec 01, 2010 7:33 am


Hello all, ive just come back from Sofia, Bulgaria where my sister had the CCSVI procedure (it went very well & we noticed her feet were pink and warm within 1hour of the procedure).

While i was there i too was scanned with the doppler and I have 60% blockages on my jugular. Although ive had a Brain and Spinal Mri (both Clear). and Ive been having Ms symptoms for a very long time.

I just wanted to say i too have the blood rush in my head, when i laugh, cough or just move too quickly, i feel and hear a rushing in my head, i just thought it was pressure in my ears as i suffer with sinus problems. So when i read this i was gob-smacked that yet again, i have more and more things related to others with this,

I too hear a wind chime sound down the back of my neck and top of spine, its weird does anyone else get that?

It would be great to catch up with others with this Beast!
takecare jen-jen x

:arrow: :arrow:
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CCSVI symptoms

Postby Rosegirl » Wed Dec 01, 2010 2:27 pm

In earlier posts, people often used the term "tomato head". When they exercised or had any exertion, their face was bright red long after they stopped what they were doing.

These posts also talked about not sweating normally until after a successful procedure. That was me. I could do an hour-long dance class and I only sweated around my head and neck. The rest of me was always dry. That was usually true, even when it was really hot outside.

Last night, about almost 5 months after my procedure (that seemed to have little benefit), I woke up in the middle of thenight and it felt like there was fizzing in my head. Today, for the first time in many months, my tintinus is much quieter. Hmmmmmmm. . . .
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Postby David1949 » Wed Dec 01, 2010 3:21 pm

For the record I don't have any of those symptoms, but then again my case of MS is probably not typical.

It would be interesting to see if those symptoms correlate with common MS symptoms, like fatigue, heat sensitivity, MS hug etc.
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