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scary night time experience

Posted: Fri May 17, 2019 1:32 pm
by fuz_mind
Hi all

I'm wondering if anyone of you has had such an experience at night with your RLS. I'm quite spooked because I have no idea what is going on or if this is normal?

Basically, my legs were trashing around uncontrollably in bed but I was very sedated and groggy. According to my husband, he had to stop me from getting out of bed because I was very unsteady (which I don't really remember). I vaguely recall feeling very agitated but that was about it. apparently the only way my husband could keep me calm was to hold me and rub my legs until I fall asleep.

It''s the 2nd time I have had such an experience. First time it happened, I was in hospital so I had put it down to being a bit delirious or disoriented after waking up from the sedation. But with this happening at home, I'm confused.

Has anyone had similar experiences?

Re: scary night time experience

Posted: Fri May 17, 2019 2:45 pm
by debbluebird
This happened to me after my knee replacements. I believe my legs were agitated by the surgeries plus all the meds they put me on at the time. Legs were jumping off the bed a foot or so. Then when I got up to bathroom, I was disoriented from the meds. I got lost in my own bedroom.
So for me the mental stuff was from the meds and the jumping legs was from the surgeries. Just agitated. I was taking about 5 meds.

Re: scary night time experience

Posted: Fri May 17, 2019 7:02 pm
by ViewsAskew
That is scary, isn't it?

It happens to me when my meds are not enough to cover the symptoms, but the medications I take make my very sleepy/tired. It is like a dream state (nightmare, more like it) and I am sort of aware, but it takes a LONG time for me to wake up. I can tell I am kicking and moving and am aware of the sensations and urge.

Re: scary night time experience

Posted: Sat May 18, 2019 6:23 am
by badnights
I know that experience well. I'm very careful now but because of bad experiences in the past, I almost obsessively warn people on this board to never take sleeping meds unless their sensory and urge-to-move symptoms are well controlled, because the WED/RLS symptoms will beat up on the sleeping pills every time. I imagine a person with severe RLS/WED could be almost comatose from sleeping meds yet still walking around (or trying to) from the RLS/WED. It's the most horrifying experience ever, stumbling around like a zombie, barely aware, with torture in your limbs. And the WED/RLS is worse than usual because it's triggered by relaxation, and the sleeping pill relaxes you.

I think that's what happened to you - your sleeping meds might be too strong relative to how well your WED/RLS symptoms are being treated.

Re: scary night time experience

Posted: Thu Jul 18, 2019 1:51 pm
by fuz_mind
thanks for normalising the experience. :) rls is just driving me crazy.

can i also find out if anyone feels agitated when the legs are just rubbing against each other at night and one is sort of half asleep?

Re: scary night time experience

Posted: Thu Jul 18, 2019 3:26 pm
by stjohnh
badnights wrote:...

I think that's what happened to you - your sleeping meds might be too strong relative to how well your WED/RLS symptoms are being treated.


That's what I think too.

Re: scary night time experience

Posted: Sat Jul 20, 2019 6:32 am
by badnights
can i also find out if anyone feels agitated when the legs are just rubbing against each other at night and one is sort of half asleep?
Probably we all do when the symptoms aren't controlled well enough.

Re: scary night time experience

Posted: Sat Jul 20, 2019 12:04 pm
by Polar Bear
can i also find out if anyone feels agitated when the legs are just rubbing against each other at night and one is sort of half asleep?

Probably we all do when the symptoms aren't controlled well enough.


Agreed here with badnights. Comes with the RLS territory.