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Posted: Mon Aug 30, 2010 12:56 pm
by blossom
dania, you are the first person that has stated about tilting your head and more strength. i can even open my hands better. it was always a question i asked neuro.'s with no answer. when i got ccsvi treatment i asked about that and even showed them. the impression i got was that he felt that it could be another issue. ??? did you ever have your neck injured or other bad trauma? i did. i know this is the wrong thread for this but can't help myself. i also when sleeping get a weird pain in the area at the base of the skull. since liberated tilting my head does not help as much. to add to this original thread here i put my bed flat again. since liberation i used ibt and mornings were getting worse than before. in fact after about 10 days everything is getting worse and i'm pretty bad as it was. i hope going flat helps. if you ever get an answer to the tilting your head thing please let me know.
s if not t
Posted: Mon Aug 30, 2010 3:33 pm
by 1eye
I agree, don't worry so much. You may be having absolutely no effect on your jugulars, or as someone said, maybe a little gravity is helping keep the things open. I was just worried (I know, stress=bad) maybe the angle (I used a 30 degree pillow) was causing the veins to operate as if I were upright (jugulars closed, vertebrals having more of the flow). But don't obsess, don't worry about it. i really didn't read up un IBT, I just thought for some reason I don't remember, it was supposed to be 30 degrees. But it was mostly a bend at the neck, which might (MIGHT) also have been a problem with the wedge idea. Don't take my word for anything. Others here know more about IBT, as I was always a private neigh-sayer to that one, probably with no good reason.
The thing with a higher degree of contrast for me is how I feel when I sit straight up first thing after sleep. I feel a lot better. That does not seem to have changed.
am
Posted: Mon Aug 30, 2010 6:36 pm
by blossom
1eye, sorry i got so rattled. you were only suggesting. i've kinda had the jitters about stuff. and hey the doc.'s are still trying to understand and get a grip on stuff so at least healthy discussions are good and who knows when it will help one of us out. it is interesting how much we are all alike yet so different but so the same in wanting answers and help. i do want to see if there is any difference in the morning.
Re: worse in am or pm?
Posted: Tue Aug 31, 2010 9:19 am
by fogdweller
dania wrote:fogdweller wrote:The veins that drain the brain operate differently at night (inclined) and during the day (upright). Dr. Sclafani told us, "We should all remember that the drainage of the blood out of the brain has two normal pathways. When lying down, blood drains out of the brain through the jugular veins. When standing up, the jugular veins collapse and blood returns to the heart through the vertebral veins."
It makes sense that if there is a blockage in the vertebral veins, but not the jugulars, then a person would subject their brain to poor circulation at night but not the day. And, of course, visa versa.
I am so bad at night that I have trouble walking from my bed to the nearby bathroom, and need to set up the furniture so that if I wake at night I can lurch from one to the other for support to make it to the bathroom without falling. I am pretty bad when I first wake up in the a.m. but after half an hour and half a pot of coffee, I am pretty good. So good that for 20 years I was 'in the closet" and didn't tell anyone I had MS and no one noticed.
I always thought that was typical, but lately other people have told me that they are fine at night and when they first wake up, but get worse during the night.
I would like to hear peoples experience, worse at night or worse during day, and would especially like to hear if some of those people were diagnosed with sttenoses, and where those stenoses were.
Please weigh in.
I am exactly like you. Much worse after sleeping or lying in my recliner. Also, I am always tilting my head back (looking up at the ceiling). When I do this I am physically stonger. As compared to if I tilt my head forward (leaving my body upright) my stength evaporates immediately.
Very interesting. Actually, I do not have an instant reaction. I can lie down for 1/2 hour during the4 day and it does not trigger weakness. It is only after lying down for a whole night that it is remarkably different. On the other hand, I have very mild symptoms. I did not even have the difference between night and day until 20+ years after diagnosis. However, recently, there is a very distinct differenence. And the fact that you have an almost immediate difference is very interesting.
Posted: Fri Oct 22, 2010 11:43 am
by fogdweller
I have had diagnosis (and angioplasty) and I would like to throw another issue out there for discussion.
It turns out that the jugular veins are primarily responsible for draining the brain when lying down, the azygous and vertebral veins when standing up.
There is often a dramatic difference in where the stensosi may be located. for example, my azygous veins appeared clear, whereas my jugulars were 70% and 50% stenosed. My symptoms were very bad at night and before I got moving (after a full night of my stenosed jugulars failing to adequately provide vascularization to my brain) and very mild during the day (when I was primairily depending on my azygous vein).
I would be interested in people who have been diagnosed correlating this location to their symptoms. We know left and right do not corrolate; maybe this does.
If you have been diagnosed (with or without treatment) please state where the stenoses were found and whether you have any pattern of day vs. night symptoms.
Posted: Fri Oct 22, 2010 1:20 pm
by SandyK
I am my best in the mornings. So much better that I do all my errands and chores when I first wake up. Throughout the day my feet get icy cold and everything is harder. I haven't had procedure and am not doing IBT.
Posted: Fri Oct 22, 2010 1:47 pm
by dania
I have noticed that I am best when my body temperature is at it lowest. Since our body temperature is low in the morning and rises during the day and then falls back down in the evening, I am ok in the morning and in the evening/night. Afternoon is the worse for me.
Posted: Fri Oct 22, 2010 2:03 pm
by Cece
For anyone who suffers from depression, serotonin levels are lowest in the morning but rise throughout the day, which could affect energy levels, etc.
Posted: Fri Oct 22, 2010 2:07 pm
by fogdweller
Has anyone who knows where his/her stenoses are located have any difference between am/pm?
Posted: Fri Oct 22, 2010 2:22 pm
by Johnson
fogdweller wrote:Has anyone who knows where his/her stenoses are located have any difference between am/pm?
R and LIJV stenoses (treated twice). AM is definitely my bad time. So much so, that I avoid sleep (generally I get 5 hours out of 24).
Posted: Fri Oct 22, 2010 2:25 pm
by dunkempt
My stenoses were in the jugulars, both sides (but standing was always the hardest thing for me). Gnereally i wasn't great in the morning. Following the procedure standing is no problem, but I am much more likely to notice symptoms like numbness soon after waking up, and they either diminish, or I am less conscious of them as the day moves on.
-d
Posted: Fri Oct 22, 2010 2:29 pm
by fogdweller
Wow. Two for two above for worse when draining relys on the veins that are stenosed. 3 for 3 counting me.
Posted: Fri Oct 22, 2010 3:03 pm
by newveins
My stenosis was in both jugs and azy. I am pretty much the same in the morning and evening except for the first hour in the morning I don't walk too well, but I attribute that to the pot that I take a couple of times every night to go to sleep (insomnia and RLS). Angioplasty did not change that.
I should think a jug with a faulty valve often will not collapse completely when upright due to the bulk of that valve and that might also be the case after ballooning. One of my jugs was stenosed due to a faulty valve and the ballooning did not get the stenosis to 0 but to 30% whereas the other got rid of 100% of the stenosis. I believe the 30% jug is not completely collapsed when I stand.
Posted: Fri Oct 22, 2010 6:14 pm
by pklittle
This is interesting reading!
I am at my worst in the morning. I wake up, feeling unrefreshed. I usually lay in bed and think a bit about what I will do that day. As my blood starts flowing more (heart rate or bp increase?), I feel more tightness and burning leg pain...and I haven't even gotten out of bed yet!
.
I want to mention too that I avoid napping during the day because I actually feel more run down and foggy after a nap.
better in morning
Posted: Sat Oct 23, 2010 1:49 am
by zinamaria
Thought I would jump in....best time is definately morning and I also do all errands and chores then..am blocked in both jugs but do not know the stats of where etc.
I sleep so soundly and have such an active dream life I often wonder which life is the 'real' one! I am free of MS in dreamlife where I run and live quite well....than I wake to MS.
Afternoon is tougher for me too, especially in summertime, than it's better in early eve than get very tired and get to bed as soon as I can close the great book I'm reading. I too used two pillows and have IBT for a year now, but now am to one pillow because I think I actually breathe better. Was having trouble there for awhile, but as I recover from the acute relapse I had a year ago, I notice it is improving.....I'll be very curious to see how all this is after Liberation, but it does make sense to stop using IBT after Liberation if your blockages were in your jugulars.
zina