This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi - this is my first post - so please bear with me

I've been reading a lot about the CCSVI topic, and I am very optimistic about this being the real reason for MS.

I have RRMS, and I would like to discuss the following:

At what time of the day do you normally discover that you've had a relapse, or worsening of your MS-symptoms?

I have noticed, that all of my MS-symptoms have presented themselves when I get out of bed in the morning. My optic-neuritis came over 3 days - each morning it was worse than the day before.

I was just thinking - if CCSVI is the cause - then maybe I am actually squeezing a vene which should not be squeezed while I am sleeping?

What do you think?

Thank you - Christian

Hi,

Maybe, but it's really just a guess, is the flow when you are sleeping even slower than when you are in a vertical position. Maybe it's slow enough to 'push' your MS symptoms.

Rob

Dr. Simka wrote a very nice document on how the venous blood flow in your jugulars and azygous veins differs in the upright position vs the supine position. That is why the Doppler imaging has people change positions during the test. See his document ::

http://csvi-ms.net/files/multiple%20sclerosis-USG.pdf

Bit more on this issue here: http://www.thisisms.com/ftopict-8455.html

Christian, to summarize, your jugulars are most important at night, ie in the supine position (assuming you sleep at night and are laying down while doing so ). During the day veins along the spine, which presumably are less stenosed in CCSVI (?) take most of the load. So your brain becomes more sensitive to the stenosis at night since there is more reflux.

First thing in the morning is worst for me. It sometimes takes 30 minutes or more for me to be able to stand up. The less I sleep, the better I am. And sometimes at 11pm, after being up since 7 or 8, I can walk a little. I am 10000% sure it is because of reflux and stenosis. It makes so much sense.

Wow - thank you guys - I will try sleeping with an extra pillow from now on. Doing a search here on the word "inclined" shows just how important this issue is! I also frequently wake up with headaches.

Well - I guess I just didn't do my research before asking ... (must have been the MS - haha)

Thanks - Christian

Christian- welcome to the boards. As far as inclining the bed, the Stanford docs recommended using a board or books under the head of the bed at the floor, to elevate it 3 or 4 inches from there. Pillows will just crimp the neck more, not good. Should help, keep us posted!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I had/have the same problem. I always woke up with headache, I was able to get up after 30 or more minutes and the first two hours were very bad. I felt drunk a lot, I was dizzy a lot.
Since I have the inclined bed - NOT ONLY PILLOW - IT IS NO, NO, NO!
I must put some wood on the floor under your bed.
Of course I tried it with pillows only. It was very bad idea. I end up sleeping on a floor.
I still feel little drunk and little dizzy but not so much as before. No way I put my bed down! I do not have the feeling I want to vomit in the morning. I finally eat my breakfast. I always felt much better in the evening.
I am not scared to wake up anymore.
I think the procedure helped me as well. But the first 15 days it was only the bed.
Erika

_________________
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

Thank you all for your fast and good replies.

Okay - tonight I will go and build a wooden magic device - to lift up my bed 3-4 inches. Thank you ALL - I can't wait to see if I can feel a difference tomorrow morning.

Thanks - Christian