personal changes made based on discovery of CCSVI

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

personal changes made based on discovery of CCSVI

Postby Cece » Mon Feb 15, 2010 2:09 pm

I thought it might be good to make a list of changes that I or others are making, now that we know about CCSVI. Here, the what and why:

Giving up enriched bread: iron that has been added to food is known as free iron, which may be worse than naturally occuring iron and may settle in the brain.

Treating my fatigue as if it may be harming me, rather than a painful inconvenience: if fatigue is a result of deoxygenation, then I may need to rest to get back up to homeostasis, even if I'm sick of resting.

Drinking green tea: iron chelator, also a source of tannins which reduce iron absorbtion from food.

Seeking surgical treatment of CCSVI: if the blood flows freely, the blood-brain barrier grows stronger, micro-leaks should cease, and oxygenation improves. Not to mention, your feet warm up.

Phlebotomy (blood-letting or donation): when blood volume is decreased, body pulls iron out of storage to make more blood; this may help get iron out of the brain.

Reducing stress: stress is a vasoconstrictor, so the veins tighten, and blood return from the brain is reduced.

Staying in when it's subzero (oh, Minnesota!): cold is a vasoconstrictor.

Not putting on my hat if I'm just walking in from the car: to let heat escape from my head; since blood flow is a main way that the brain regulates its own temperature, having impaired blood flow can mean an impairment in the brain's ability to cool itself.

Sticking three books under the bed frame's wheels at the head of my bed: jugular veins close when a person is lying down, so keeping at an incline may keep them open and aide venous return during sleep or rest.

Considering cutting my long hair to chin-length: long hair can be hot. Baldness is probably optimal, I can only imagine my husband's reaction to that!

Additions to this list are welcome, especially if you have made changes in your daily life; please include the what & the why.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby frodo » Mon Feb 15, 2010 2:43 pm

Difficult to add anything. The list is quite complete. Maybe would be good to add that is better to rest sitting down that lying, to reduce the flow overload of the yugulars.
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Postby thisisalex » Mon Feb 15, 2010 2:48 pm

im not sure about heat... is it vasoconstrictor or dilator?
what about heat intolerance in MS?
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Postby Cece » Mon Feb 15, 2010 3:11 pm

thisisalex wrote:im not sure about heat... is it vasoconstrictor or dilator?
what about heat intolerance in MS?


I hope I don't bungle this explanation...my understanding of heat is that it is a capillary dilator (which offshoots of the artery system, not the venous system, even though it is one big circle). So when your capillaries dilate, more blood ends up flowing through your system, there is more blood trying to fit past the obstruction in the jugulars (which is fixed), and voila, reflux and iron leaking into the brain. Also, with heat, your brain is challenged to cool itself, so that may be the other half of heat intolerance symptoms: normally the blood flow leaving the brain is 10% hotter than the blood flow coming, which shows it's taking heat away...unless it's just swirling around and being obstructed and refluxing back, which makes it far less effective at cooling the brain.

Heat is bad for m.s., I've known that, but it's new knowledge to me that the extreme cold is bad too. The effect may be subtle...I'm trying to shift as much as I can over into the healthy or vasodilating side of things, in the hope that a lot of small effects add up.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Cece » Mon Feb 15, 2010 3:22 pm

Things I should be doing:

Exercise: to improve cardiovascular health, keep the endothelial cell walls of the veins springy and new (as opposed to leaky and old), BUT also respecting my fatigue and stopping when it hits and recovering before I work out again (since fatigue could be result of blood refluxing above an obstruction).

Meditation: for stress relief and because deep breathing out assists venous return (pulls the blood forward).

Giving up excessive sugar: sugar in the blood stream may open up the blood brain barrier, letting more leak through than usual.

Reducing fat in the diet such as in the Swank ms diet: so that no fat globules pile up against an obstruction and worsen it.

Reducing abdominal fat: through a chain of effects, it weakens venous return from the brain (at least, in obese people in a study of a separate cranial pressure issue, but the reasoning seems to hold up)

Here is one more I did:

Giving up Diet Cokes: caffeine constricts veins, which is why it works as migraine relief; nutrasweet is neuro-excitatory, which is probably not healthy for damaged neurons. (I went from 6-7 a day down to 0-1 last month.)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby shye » Mon Feb 15, 2010 3:30 pm

Yes, but caffeine chelates iron :lol:
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Postby Cece » Mon Feb 15, 2010 3:34 pm

shye wrote:Yes, but caffeine chelates iron :lol:


Does it really?!

Irreconcilable! :lol:
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby shye » Mon Feb 15, 2010 3:44 pm

actually, coffee chelates iron, not sure if it is the caffeine
yes, a conundrum for sure
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