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Kicking while awake?

Posted: Tue Sep 25, 2007 3:41 pm
by jesterfest
Does anybody deal with this? My legs kick involuntarily at night while I’m trying to fall asleep and interfere with sleep. When it’s bad I only get a couple hours of sleep a night. I don’t experience the usual RLS uncomfortable sensations or voluntarily move my legs for relief. I’ve been dealing with it for 10+ years. Some meds have worked but tend to fade over time. Medical workup includes normal neurological exam and normal sleep study (the scoring criteria only counts Periodic Limb Movements while asleep). The pattern is possibly a RLS variation. Anybody have similar symptoms?

Posted: Tue Sep 25, 2007 4:42 pm
by SquirmingSusan
Yes, actually many of us do. It's called PLMW - Periodic Limb Movements while aWake. (Something like that - the W stands for awake or wakefulness or something...)

It seems that most of the people who are afflicted with that, who post around here, are people who have severe or augmented (made worse by dopamine agonists) RLS.

Annoying isn't it?

Posted: Fri Sep 28, 2007 4:01 pm
by jesterfest
Thanks for info Susan. I searched past discussions on PLMW. My symptoms started before taking meds and are 90% in right leg with irregular jerking or flopping movements. It’s been hard to describe to doctors, so I video’d it. I’m curious if this is what PLMW looks like for other people too? I posted it online at The intensity and frequency vary a great deal. Thanks, Erik

Posted: Fri Sep 28, 2007 8:42 pm
by SquirmingSusan
:shock: Wow. That would certainly make it difficult to sleep. What did the doctor say? Does this just happen in the evenings when you're trying to sleep?

I guess my jerking is similar, but not nearly as frequent. At it's worst maybe I've had 6 different jerks going on in different parts of my body, at varying intervals between 30-60 seconds apart. So put them all together and it works out to a jerk every 5-10 seconds. But that's at it's worst. It's been much milder lately for some reason. I hope it stays that way.

Let us know what the doctor says.

Posted: Fri Sep 28, 2007 9:35 pm
by ViewsAskew
I had my partner look at it to see if it looked like my PLMD while sleeping - he said this was much more exaggerated than what I do. While awake, mine were also much less frequent and more of a specific reflex jerk. But, that's just me.

Like Susan, would love to hear what the doctor says.

Posted: Wed Oct 03, 2007 9:02 am
by sherjo
Hi there, I've tried to watch your video on You tube but it has been removed. I think what you are describing is what my husband does when he is falling and has fallen asleep. I would be very interested in watching your video. I too have videoed my husband while he is asleep. He has completed 4 sleep studies now and suffers from RLS. Can you help me with your video? Many thanks

Updated video link...

Posted: Wed Oct 03, 2007 3:58 pm
by jesterfest
Video got moved to Thanks, Erik

Posted: Wed Oct 03, 2007 7:29 pm
by Polar Bear
Wow, I just watched your video on utube. I have never seen anything like that before. You have my greatest sympathy.

Posted: Wed Oct 03, 2007 9:30 pm
by KBear
Wow, Is all of that involuntary movement? I suspect that at least the big movements (lifting legs off the bed) are voluntary movements trying to stop the involuntary movement. That's what it looks like anyway.

I think my RLS movements look the same when I'm in the midst of an episode except that I know that most (if not all) of my movements are voluntary. I may have PLMS but I've never had a sleep study done. Generally my RLS wakes me up in the middle of the night and I suspect its involuntary movements that wake me, after that I just can't lay still and I move myself.

Posted: Thu Oct 04, 2007 4:33 am
by sherjo
Wow, this is very scarey!! :o I'm half way around the other side of the world and I sware that this could be my husband. What a relief to know that there is someone else out there in the big wide world that is going thru the same things as us. I've never visited utube before but I will try and upload a video that I have. Well I have several that I secretly took while my husband slept. Neville is my husband. A question for you. Do you suffer from this in your arms?? Neville sometimes sleeps on his tummywith his arm under the mattress. He inserts his arm up to to his elbow between the mattress and the base. He wonders why he wakes up with pins and needles in his arm. Most bizarre. There are large scratch marks on the leg of the bed head when he has been trying to post his arm.
I'd like to talk to you more about this. Thanks for sharing your video.

Posted: Thu Oct 04, 2007 7:29 am
by mackjergens
Are you taking an antidepressant? I know when I was put on zoloft that my arms, legs and whole body would jump/jerk at times my whole body would jump up off the mattress! I knew it was the zoloft as this all started when I started taking zoloft. Once I stopped zoloft it all went away, well actually I do have a mild case of plmd at times. but not often!

Posted: Thu Oct 04, 2007 7:41 am
by cornelia
The video could be me as well, although while awake most of the time in my arms and in bed in my legs. Strnge syndrome.


Posted: Thu Oct 04, 2007 10:42 pm
by jesterfest
Thanks for the replies. I really appreciate it! In terms of different questions: the movements are involuntary, in my legs only, and happen at night (between 9pm and 7am). I haven’t been on antidepressants. The leg jerks stop if I get up and stand or walk, but then frequently return when I lay down again. Symptoms vary a lot with good nights and bad night. If any of you have video, it’d be really helpful for me. Thanks again, Erik

Posted: Fri Oct 05, 2007 10:05 am
by cornelia
Erik, I saw dr B's answer to your post. He said that if you suffer from PLMW you should have PLMS as well, if I understand correctly. But as I said, when I go and lie down on my bed (at any time) my legs are doing exactly the same thing as your's do and 2 sleep studies showed I have no PLMS. Personally I think PLMW's are a severe form of RLS, not PLMW, but I'm no doctor.

Posted: Fri Oct 05, 2007 10:06 am
by cornelia

in the last sentence of my rpevious post PLMW must be PLMD