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PostPosted: Thu Apr 08, 2010 11:31 am 
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Location: Gatineau, QC, CA
!! When I moved with my girlfriend 4 years ago, I started to read in the bed, like she's doing every night before sleeping (it help her to sleep!)
and I bent the neck a lot to read,

and after some months, then very light symtoms had appeared...

difficulty to run was the first symptom.
I trained for marathons and Raids some years ago before an injury, so I was thinking I needed more training! so I trained myselft without results, now I'm using the wall to walk...

I dont thing it's the cause of my ms, but the coincidence is very funny...
Dont Read to much, it cause MS! (Joke!!)


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PostPosted: Thu Apr 08, 2010 11:31 am 
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zap wrote:
But now that's it's more than a hunch of mine, I can hopefully muster the will to sleep on my back most or all of the time, rather than just rarely ...

I'm another stomach sleeper - if I'm lucky, on my side. I have stuffy sinuses and a swollen-feeling head many mornings, and have long suspected, even before MS disgnosis, that I should try to sleep on my back instead ....

I started trying to sleep on my back last night, I'm also bad about being on my stomach a lot. Embarrassing to say that a picture of a monkey drove me to it, but oh well. I had actually thought early on when I got back from Stanford that I felt better the first few days when I was sleeping exclusively on my back. So I've been thinking about it off and on since. But the monkey pushed me over the edge. I think it will be hard to stay on my back a lot though.


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PostPosted: Thu Apr 08, 2010 5:09 pm 
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..anybody know how to 'poll'? ..
MSers 'stomach sleeper' yes___ no___
Significant other or? without MS that you have knowledge of sleeping position .. 'stomach sleeper' yes ___ no___

I can start it.. me with MS - yes.. Partner without MS - no

I was told 30 years ago that sleeping on your stomach was bad... but it's sooooo comfortable.. :roll:


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PostPosted: Thu Apr 08, 2010 5:32 pm 
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Hey PCakes-
I'm the nonMS stomach sleeper in our family. Jeff with MS is back, or side.

I don't think the correlation will be black and white...for Jeff, his jugular veins were pinched off just lying on his back. No flow. But for some milder MS cases, who knows? Maybe the stomach sleeping is enough to create reflux and slowed perfusion at night. It certainly is something to consider.

Dr. Claude Franceschi talked about positional reflux in Bologna, and I thought he made some great points about considering everything in this venous puzzle. For those without obvious stenosis upon venography, this positional angle might be a place to explore- like IBT therapy. We humans spend alot of time horizontal--would be good to make that healthy time for the brain.
cheer

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


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PostPosted: Thu Apr 08, 2010 5:37 pm 
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Just wanted to add that I always slept on my stomach because it was a position which relieved some pain for me. Since treatment my pain is better and I now sleep on my back. Good stuff Joan!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.


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PostPosted: Thu Apr 08, 2010 9:19 pm 
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Hi Cheerleader,

I agree.. and you've described me.. mild benign symptoms..diagnosed at 50 but in hindsight symptoms going back almost 2 decades..and now a recipient of a positive doppler for possible valve or web issues (no stenosis).. it's impossible to ignore what seems to be a connection between the degree of insuffiency, the cause, and the progression/ course of the disease. There is so much to learn..this is a very exciting time.

Thank you,
pCakes


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PostPosted: Thu Apr 08, 2010 11:59 pm 
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magoo wrote:
Just wanted to add that I always slept on my stomach because it was a position which relieved some pain for me. Since treatment my pain is better and I now sleep on my back. Good stuff Joan!


Shouldn't be closed the jugulars while sleeping? I would say that the effects of turning the head would appear only while standing.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info


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PostPosted: Fri Apr 09, 2010 12:20 am 
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frodo wrote:
Shouldn't be closed the jugulars while sleeping? I would say that the effects of turning the head would appear only while standing.


Internal jugulars only work while lying down. They collapse while standing.

http://www.ncbi.nlm.nih.gov/pubmed/15284348

PS - I've always slept on my back.


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PostPosted: Fri Apr 09, 2010 2:14 am 
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Internal jugulars only work while lying down. They collapse while standing.


Mine do not collapse. And they pulse backwards in time with my carotids. Weird, huh?

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PostPosted: Fri Apr 09, 2010 2:35 am 
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I had the flow rate of my IJVs checked this week with ultrasound.

Turning my head from one extreme to the other whilst lying on my back changed the flow rate dramatically. It went from 4 cm/sec to 200 cm/sec!

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5


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PostPosted: Fri Apr 09, 2010 4:58 am 
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This is very interesting!

Since my largest relapse 5 years ago, must have realised that sleeping on my back with pillow-roll in my neck gave me some relief of the strong vertigo/instability I had - I remember even slept for the worst period for 1 month with pillows in sitting position. Since then I now sleep mostly on my back or side stimes, always with my now already squeezed historical pillow roll under my neck...And now since 2 months apply IBT in addition.

So now I wonder whether this could have contributed to my slow but steadily improving remission over a 9 month period from this strong instability relapse in 2005 (slow remission without cortisone and any other med, as had MS over 10 years with smaller symptoms without knowing. Had even been hospitalised in 2005, followed by running around for 1 year to all kind of med specialists, also neuros, and not been diagnosed).

And then, once was diagnosed, after two smaller further relapses in mid 2006, maybe sleeping on my back with stabilised neck saved me until today in combination with interferone and Swank diet from being hit by further relapses? Or I am just lucky to seem to have a mild form and history of RR MS as the neuros claim? Noone can know the answer for sure, I guess.


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PostPosted: Fri Apr 09, 2010 5:15 am 
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Johnson wrote:

Mine do not collapse. And they pulse backwards in time with my carotids. Weird, huh?


As the abstract states, a central venous pressure (like the Valsalva manoevre) causes the jugulars to remain open while standing.

We obviously have some weird stuff going on with our drainage system, we have blockages, and we often have reflux. So I don't think it's surprising that your results would have "abnormal" findings.

But Frodo asked whether jugulars should be closed when sleeping and that's what I was answering, they are OPEN while in the supine position.


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PostPosted: Sat Apr 10, 2010 6:57 am 
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I also remember that I was experiencing a "falling asleep" of the back of my head before the procedure. It wasn't MS numbness, it was a lack of bloodflow like in your arm or leg, only it was my head. Frightening! I wonder what damage was done while I slept?

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.


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PostPosted: Sat Apr 10, 2010 7:42 am 
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another thing that occurs to me is that I breathe very shallowly/quietly while sleep - I wonder if this might also contribute, by not "priming the vascular pump."

(deep breathing promotes vascular return to the heart, although I'm not 100% sure if this is also true in the prone position).


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PostPosted: Sat Apr 10, 2010 10:58 am 
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zap wrote:
another thing that occurs to me is that I breathe very shallowly/quietly while sleep - I wonder if this might also contribute, by not "priming the vascular pump."

(deep breathing promotes vascular return to the heart, although I'm not 100% sure if this is also true in the prone position).


Not sure on this correlation, Zap. Before Jeff's procedure he had severe sleep apnea--would wake up gasping for air, and he was a major snorer. Now, his breathing is quiet and regular and no more waking up, gasping. I think shallow, regular breathing is normal for sleep time--but I haven't researched this at all, so I have no facts to back this up. Both Zamboni and Dake's patients have noted better sleeping after their angioplasty.
cheer

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


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