worse in am or pm?

[fogdweller]

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.

[AMcG]

Gosh Fogdweller you are an incredibly patient person to put up with that for 20 years!

My mornings were always awful. Wake up with a headache and crushing weight on my head and shoulders, stagger into a chair and sit for half an hour. By about midday before I would feel up to really doing anything. Carry on improvimg during the day and feel pretty good late in the evening. I used to dread going to bed and trying to sleep.

But I am liberated now so no headaches, no problems getting up and no problems going to sleep. Oh and I had stenoses in both jugulars.

[1eye]

Before liberation I slept with a triangular pillow to prop me up because I felt rotten if I didn't. When I woke up it felt worse than when I went to bed sometimes. Now I am back to feeling rested in the morning and petering out as the day wears on. It all makes sense to me. I don't need the pillow (a security blanket? maybe).

[Brainteaser]

Hi Fog,

I'm similar to you - night not good and difficult to get up and get going, but day OK.

I wonder if you have your veins reversed. If night no good, then jugulars faulty but if day crap, the vertebral veins not good?

Phil

[blossom]

when i can force myself to lay on my back i actually feel in ways better but i have all my life been one to curl up on my side then half way through the night flip to other side. i inclined my bed and as a rule even yet feel i do not move as well till a few hrs. pass. i wish i could train myself to be a back sleeper maybe it would help. ???

[1eye]

Just trying to contribute here... knowing the blood wants to drain thru jugulars at night... that is why I stopped using the pillow, to keep my newly ballooned veins full and inflated... I didn't want restenosis which I felt would be more likely if the vertebrals took on the load during the day (deflating the jugulars) and I kept the load on them using my cut-rate version of IBT at night. So I thought (though maybe sacrilegious to some IBT enthusiasts) that inclined therapy might be a bit counterproductive (depending on your location of stenosis and dilation).

[PCakes]

Just trying to contribute here... knowing the blood wants to drain thru jugulars at night... that is why I stopped using the pillow, to keep my newly ballooned veins full and inflated... I didn't want restenosis which I felt would be more likely if the vertebrals took on the load during the day (deflating the jugulars) and I kept the load on them using my cut-rate version of IBT at night. So I thought (though maybe sacrilegious to some IBT enthusiasts) that inclined therapy might be a bit counterproductive (depending on your location of stenosis and dilation).

Wondering about this myself What you say makes sense to me. If the jugulars are fine IBT can't be a good thing, can it? You could be messing the best 'draining' hours. hmmmm

[Cece]

Not sacriligious but brilliant per usual. ;)

If the jugulars are deflated they'd be more likely to clot together, wouldn't they? So immediately post-liberation you'd not want to be using IBT, if the stenosis were in the jugs. It will be hard to give it up but I think I will do this.

I don't have a clear answer to weigh in on the main question. I tended to feel very bad immediately upon waking, then do well for a few hours, then struggle through most of the day, then often do better during the evening than I was earlier. Since IBT, I am much improved at the start of the day, but the rest is the same. I take less provigil now, though. I do not yet know where my stenoses are.

[sbr487]

I thought of posting this topic so many times before hoping that it will give clue to issue ...

anway, i normally wake up feeling pretty bad and generally better over time.
But there are exceptions. Funny - sleep is supposed to make one feel fresh ...

[blossom]

2 days after liberation on aug. 3 i was on a flat bed. since inclined. i know they said they ballooned both jugs. high-low no clue. now 1eye what you are saying inclined is no good. i think i'm following this. i had gotten a odd pain at the base of my skull for yrs. and it seemed that when i had it the ms would worsen. the ibt seemed to help it and had not had it since liberation. but last night it was the worst it had ever been. crap,if i blankety blank blank blank messed up my blankety blank veins. maybe this should be a thread so others don't get screwed up. i don't understand it quite but i know you guys are up on this stuff. so cece you agree with 1eye right? oh crap, double fudge fudge. maybe if i can get someone to hang me like a bat would that help undo any damage i might have done?maybe that's why the few small improvements have faded. oh great, bad enough i came back with a numb leg now i might have messed up myself. and i gotta sleep that way till my brother gets here to lower it. damn i liked everything else about ibt and now this. oh well.

[Cece]

blossom, sorry to worry you, I really don't know for sure

[AMcG]

I am not sure I am following the logic of what is being said here. Your jugular veins are open when you are lying down, yes. But I don't think raising your bed 5 degrees would change that. If IBT is having any effect it would be to assist drainage through the jugulars by adding gravity to the situation.

I think IBT will help not hinder.

[fogdweller]

Hey everybody, this thread has seg-wayed into restenosis of recently opened veins. We absolutely do not know what causes restenosis...it is probably not simple clotting of the ballooned area or healing shut of the ballooned opening, but all of that might or might not have anything to do with it.

DON'T ANGST OVER HOW TO AVOID RESTENOSIS!! We don't know.

Blosom, you may be in better shape than anyone. Or not. If you have some relief, be thankful and don't stress over what we can't yet avoid or not. As the song says, don't worry, be happy.

[val57gal]

Just trying to contribute here... knowing the blood wants to drain thru jugulars at night... that is why I stopped using the pillow, to keep my newly ballooned veins full and inflated... I didn't want restenosis which I felt would be more likely if the vertebrals took on the load during the day (deflating the jugulars) and I kept the load on them using my cut-rate version of IBT at night. So I thought (though maybe sacrilegious to some IBT enthusiasts) that inclined therapy might be a bit counterproductive (depending on your location of stenosis and dilation).

I have to agree. After my first procedure, my jugulars stayed open for 2 weeks. That night, I started using a wedge pillow. 5 nights later, my right vein started hurting and when we checked later, it had 100% restenosed.

So I'm going to lose the wedge for now and hope I can keep my newly-opened veins open. Too bad--I had gotten used to sleeping on that darn wedge!

[dania]

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.