This Is MS Multiple Sclerosis Community: Knowledge & Support

When my father was gone, I longed for those days, even the ones when we didn't have much to say to each other, just to have some of that feeling of love for him alive and kicking, back again. By the same token, I regret that my son finds it so hard to speak humanese to me, and is all wrought with girls and rugby balls and cars and eyephones.

But sometimes late at night or very early in the morning I can hear him trying to say something to me.

My father stayed up late. It started out, I think, as the only way he could study because the three of us brats made too much noise during the day. Later, it became a game of who can outlast the other. Finally, he slept maybe two hours a night at the end of the main part of his life, maybe partly because he wanted to be awake for as much of what was left to him as he could.

Maybe he couldn't help it.

I usually have fairly good days. I get dressed, I have breakfast, I might have a trike ride. Afternoons I spend mucking about with the computer on my lap mostly. I have dinner. Things start to deteriorate the closer it gets to bedtime. My legs start jumping. Sometimes it takes several tries before I can get to sleep. I get up, I lie down. Used to have a bit of success with a noisy uncomfortable CPAP machine, which now is a collector of fine dust. I used to think maybe I just need a good ritual, like a dog when it turns around three times, is it widdershins?

What I'm starting to think is that maybe I've trained myself, not just psychologically, but physically, to stay awake past my bedtime. What if, because all those extra hours of being upright, my jugulars just are no good at being patent any more? What if my narrowings are late-onset because the jugular takes that long to atrophy? What if I can't sleep because my brain can't get enough oxygen after I lie down? My wife says my apnea has gotten worse. I sure never used to have *any* trouble getting to sleep. My soft palate can't be the problem anymore, because I haven't been this skinny since I was 18.

What if the thing that the British brought to the Faroes in WWII was Daylight Savings Time and the desire to stay up past bedtime?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Letting the cpap gather dust?? Oxygen when sleeping is important... especially if you have known restenosis as shown in a Barrie ultrasound....what about trying a different quieter model of cpap?

Congrats on the skinniness though.

You might sleep harder if you've been biking during the day, which could lend itself to more apneas.

I would have thought I'd find it easier to sleep after riding -- I usually have to push myself to not nap afterward. The CPAP I just can't stand. I probably need oxygen. Mostly, though, I need better blood flow.

Something sticks with me. The ultrasound guy in Montreal, saying: "don't lie down". Maybe I shouldn't. How do horses do it, I wonder?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

...4 legs..1eye

NHE

This one will never have jugular problems!

I used to be able to do that too when I was a yearling. In fact I have a photo of myself sleeping sitting up! Sleep used be so cheap, now I can hardly afford it.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Lack of sleep has not affected your wit!

Are you taking any medications that interfere with sleeping? Provigil/nuvigil?

Less medications since the procedure (now I'm on no daily Baclofen, no daily painkillers, no Effexor and only half as much Wellbutrin), but I'm totally 100% stone cold awake for the night if I take provigil after about 3pm. I take 2 a day, before noon. Sometimes less if I forget. I just skip it if I haven't needed it to get awake. This morning, for instance I waited until just before we went out into the 40 degree Celsius noon humidex for the hour's ride.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience