a.m. or p.m. symptoms and locating stenosis?

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

a.m. or p.m. symptoms and locating stenosis?

Postby fogdweller » Sat Apr 23, 2011 1:13 pm

This is a very simplistic thought; now that we have had a large number of us that have recieved diagnosis I am curious if there might be some poissible correlation:

I have very very sever symptoms in the morning or if I get up during the night. I can't stand well, can't walk easily, and need to be very careful about falling. Say an 8 in severity. After I have been up for half an hour, it receeds to about a 3 (used to be 1 but a bit worse in recent years) for the rest of the day.

Since the jugulars are the primary drain during the day and the azygous primary location at night, could this be the reason my symptoms are so different at night than in day? The Doc found that my jugulars were almost completely stenosed, and my azygous clear. However, this seems backwards in my case since ?.

What have other people found? Could there be a diagnostic hint here? Why else so differen t day to night?
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Postby Cece » Sat Apr 23, 2011 2:28 pm

Your case is not backwards at all. Jugulars drain during the night, vertebrals during the day. There is an image out there that I love for this:
Image
What a difference between lying down and upright. The image is attributed to Dr. Zamboni.

As for the question, for myself, I had badly blocked jugulars but clear vertebral veins and azygous. I was at my best first thing in the morning and last thing at night but very much dragging in between. I don't think there's much that can be learned from me in this regard!

(Is the picture Way Too Big? Let me know...)
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Postby lovebug » Sat Apr 23, 2011 2:48 pm

`Fogdweller` I am opposite in symptoms from you. In the morning my nerve pain (numbness with pins and needles feeling) is not so bad but by 3:00-5:00 p.m. extreme pain sets in. Everyday is the same. I had the CCSVI surgery, like yourself, in California 2010. I did not actually have any stenosis but my problems were in the valves at the collar bone level. Right valve occluded 70% amd the left side occluded 50%. Azygous o.k. I discussed this with my neurologist this week and even he seemed baffled. One suggestion that was perhaps I have a temperature regulating problem now. Which kind of makes sence since I find myself sweating more now at the slightest activity that I do. Higher body temperature makes my symptoms worse. But than again the Lyrica and weight gain have not helped at all! Unfortunately I fall into the 1/3 of MS patients that have the CCSVI surgery with no relief what so ever of symptoms.
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Postby 1eye » Sat Apr 23, 2011 3:13 pm

I really think it is important that people of all descriptions understand this. The jugulars of a normal person provide extra low-pressure drainage for the brain when they are horizontal.

When you are upright, your jugulars are not as necessary. Still useable, but mostly collapsed, because gravity forces outflow blood to take another route.

If you have stenosis in your jugulars, it is this low-gravity drainage that will not work as well, or be missing. If you could sleep standing up, that would be a kind of answer. That is what one radiologist actually told a person to do.

If there were no circulation through your brain, you would not be alive. It is when flow is slow, and marginal, that we get this kind of creeping disorder that takes a long time to manifest, and then something seems suddenly broken. It was actually a long time coming.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby fogdweller » Sat Apr 23, 2011 3:46 pm

1eye wrote:I really think it is important that people of all descriptions understand this. The jugulars of a normal person provide extra low-pressure drainage for the brain when they are horizontal.

When you are upright, your jugulars are not as necessary. Still useable, but mostly collapsed, because gravity forces outflow blood to take another route.

If you have stenosis in your jugulars, it is this low-gravity drainage that will not work as well, or be missing. If you could sleep standing up, that would be a kind of answer. That is what one radiologist actually told a person to do.

If there were no circulation through your brain, you would not be alive. It is when flow is slow, and marginal, that we get this kind of creeping disorder that takes a long time to manifest, and then something seems suddenly broken. It was actually a long time coming.


I did have that backwards and I sort-of thought so. In that case, it makes some sense that with stenosed jugulars, I was getting poor drainage at night, and after a full night of reflux onto damaged areas, and poor flow in the damaged areas, it would seem most accute, but after I had good flow for awhile, symptoms were less accute. Although Cece pnts out this is not necessarily so, so it may not be helpful in locating a problem. Still, since a lot of azygous stenoses seemed to be missed, it might be a signal to look extra hard at the azygous in people who had gradual decline over the day andwere improved in the a.m.
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ibt

Postby codefellow » Sun Apr 24, 2011 5:59 am

Have you looked into IBT (inclined bed therapy)? This is another idea that was ridiculed when first proposed, but now has a fair share of proponents.
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