Night rolling

[rthom]

This is a bit of a funny story. I have no hair on one of my knees--other one covered. Anyway apart from the itchy tugging being ammoying the oddness of it was amusing myself and my wife. I Got the answer yesterday. I've been sleeping little but awakening really sick to my stomach from all the log rolling i do, and i use the same leg to push myself with--lol lol lol.
Question, anyone do that to the point of causing daily nausia and headaches? Ideas about how to stop the rolling that don't include confining situations?
Thanks folks

[Chipmunk]

Have you looked into a "squeeze machine"? They sell them for people with autism or other sensory integration disorders, but I think people with WED might find it helpful, like compression stockings or rubbing the legs. It applies gentle but firm pressure for as long as you want it to.

They are holy cow expensive, so you'd want to try it before you made a purchase, and check to see if there was a way to get your insurance to cover it.

Here is a link: http://www.therafin.com/squeezemachine.htm

[badnights]

What's log rolling? (If it's what it sounds like, how does your wife get any sleep?)
There are pneumatic compression devices on amazon - too expensive to buy untested, for me.

[rthom]

It's a term the Dr used once when talking to me about turning over incessantly in my sleep. I turn over and over repeatedly and quickly, thus making me sick and head achy and generally awakening P'd off.
We have not been able to sleep in the same bed for over 10 yrs due to my WED. WE both miss out on a lot. We can't even use the same room because it's so bad. My good night s are like last night getting 2 hrs sleep--so this just keeps her awake if I'm coming and going during the night. I have a room in the basement where I don't need to worry about waking the family needlessly and I can do what I need to keep sane during those longer nighs. About the compression devices--the one up top is not something i could see to be helpful as I can not tolerate anything restraining me.

[Chipmunk]

I didn't know if you were saying you were rolling because you were constantly needing pressure on your body or if it was just part of the WED. That sounds awful.

[rthom]

I can't not roll I awaken overheated and nauseous from the speed and intensity of the movement. This happens every time I sleep at night--not if i nap during the day. Weird eh?

[rthom]

Not to sound like I'm looking for sympathy or a woose or anything but sometimes (like last night) I'm afraid to go to bed--the consequences of falling asleep are just too much to voluntarily put myself through, some days. The thought of this being a progressive disease is truly horrifying.

[Polar Bear]

That's kind of rough - on the one hand you need and want sleep, and on the other hand you fear the consequences of sleep. Have you ever been to a sleep clinic.

And yes, I agree, the thought of this progressive illness is totally daunting. My own fear is of being in the situation of being unable to communicate and being under-medicated.

[rthom]

I have the same fear--other health issues make it a possibility (not a likely hood) so it niggles away in the back of my brain. And yes I've been to a clinic a couple of things wrong the WED, PLMDs and something else I can't remember the name of. The Dr. said I had a really, bad case of this and I saw the head of the Toronto clinic at western(or general? memory issues) He had a colleague from Britain that he wanted to see me. so for the sake of science I went back to do the guinea pig thing. He basically told me at that time I could try different things but maintenance with opiods was likely to be the only thing that will do much. Pretty much empathetically told me I was one of those lucky few the scientists like to study as I'm off the charts with the movements. I also sleep backwards, drop off to sleep and immediately start to awaken, so if i start to wake from anything even my own movements, I can't go back to sleep i just wake right up and am done sleeping for the day. No rousing and then dosing back off for me. I never have been able to do that, so when others rouse from sounds thoughts pains etc. and doze back off I awaken no matter if it's 30 sec or 3hrs and can't fall asleep again--even with the opiods.

[dogeyed]

RTHOM, I don't want to sing to the choir, but I'd like to make a couple suggestions. First, drink a half glass of milk before you go to bed, second is don't take your opiate just before bed, rather take it earlier in the evening, perhaps after dinner, and third is get a solid foam pillow that will hold your head up a little better and get a soft pillow to hug on so you will be less likely to roll. The reason you are rolling is because your right leg is pushing and thrashing, and with one leg going at it, it's going to tip you over. I most definitely think whatever drugs you are on, you're not getting enough. I went thru a period where my back suddenly got a whole lot worse and I couldn't sleep well and had trouble getting better pain control, so my doc gave me Lyrica, it helps me sleep more soundly and helps with the pain. It does make me a little drowsy during the day and makes me a little off-balance, but could be it will help you, too, on top of what you take now.

Your description of REM taking place early in the sleep period sounds a little like cataplexy (sp?) which often goes with narcolepsy. Cataplexy does something to REM to where it occurs very quickly after falling asleep, so this wrecks the whole synchronization of sleeping patterns. So, you could also try Melatonin capsules from the health food store, it helps you sleep a little more normally, the rhythm gets back to normal. There are also medicines specifically for that condition, might help you sleep sounder and thus your muscles will have a longer period to rest. Hope some of this helps.

[rthom]

thanks

[Chipmunk]

Cataplexy is when part or all of your body is paralyzed. It often happens in people with narcolepsy, and can occur in others in certain cases. I would imagine you are entering REM sleep immediately because you are so sleep-deprived.

[Kimberly]

Not to sound like I'm looking for sympathy or a woose or anything but sometimes (like last night) I'm afraid to go to bed--the consequences of falling asleep are just too much to voluntarily put myself through, some days. The thought of this being a progressive disease is truly horrifying.

Oh boy, can I relate! My WED has progressed now to the point where in any given 48 hour period, I am awake and tortured by WED/PLMW with no sleep for 25 hours, then pass out and get approximately 6-8 hours of interrupted sleep, but only during the day as I am now completely nocturnal. The remaining hours I spend recovering and preparing for the next 48 hour battle to begin, again. I cannot believe the toll WED has taken on my body, both physically, mentally and emotionally. For the first time, I have finally acknowledged that if this disease progresses, as it has, there will come I time when I am completely unable to sleep. My docs have told me I can live without sleep for 2 weeks, max. The pressure to sleep is mounting and I too dread nightfall knowing what's in store for me. At the same time, when I finally do get a few hours of sleep during the day, I awake angry that the day is gone, my breakfast is dinner, and only a few hours of sunlight are left to enjoy. I know I can prevent the triggering of my symptoms by staying awake, but we can't stay awake forever, at some point we must face the torture that comes with trying to sleep. The other night I discovered what 'living hell' is. It's the place where your symptoms are so bad that you can't fall asleep, but you're are so exhausted (or drugged up) and you can't full wake up in order to relieve them. I found myself in a terrible place, half awake, half asleep, being tortured and begging god to take me. I'm so miserable that I find I often tell myself if I ever get to sleep, I hope I never wake up. Now, don't get me wrong, I'm not suicidal. I don't have the guts and still plenty to live for. I just figure if I'm going to go anyway, I deserve to have it be in sleep

Edit to add: I am also a night 'roller' and 'rocker'. Rocked myself head first on to the floor last night. Not the first time, won't be the last

[rthom]

kimberly

thanks for your post it was very helpful. How long have you been doing the completely nocturnal thing? Has it had bad side effects for your health/emotions, etc.?