Night time twitching

[KTangel]

Hubby suffers from what I can only refer to as the "fish out of water" syndrome at night. He flops and flops and twitches and flops and twitches! He has tried every RLS med out there! He also (at times) runs in his sleep almost. I have long since abandoned trying to share a bed with him (have not done so for over three years) but am frustrated by it. Anyone else out there have this issue?
 




EDITED:  Moved thread to proper section - Goofynina/Moderator

[Panda_9]

Has he ever tried gabapentin? What type of dialysis is he on and how much?

[KTangel]

He is on in unit hemo three times a week for four hours. I am not sure if he has tried that med. I will ask him.

[Panda_9]

There is no hard evidence as to what causes RLS. For me, it definitely is related to the kidney failure. It went away when I got a transplant, and the nerves all grew back and I regained feeling in my feet. The horrible tingling, pins and needles, and sensitivity went away as well. Ask the doctor about gabapentin, it has done wonders for me, I cant rave about it enough! The only downfall is it is removed when you dialyse, so the sensations may return after dialysis. Just make sure you take it as soon as you get home, so it has time to kick in before bed time. You only need to take it on dialysis days (after dialysis).

[Black]

Hubby suffers from what I can only refer to as the "fish out of water" syndrome at night. He flops and flops and twitches and flops and twitches! ...

My husband has had that since we married over 26 years ago,  decades before he had any symptom pf PKD or kidney failure.  One doctor told us that during sleep part of the brain is controlled by a chemical which prevents us from physically carrying out the movements we make during our dreams.  He said experiments had been done with cats which showed that without the chemical they were completely mobile during REM sleep, as when they were awake, but they were sound asleep.  He said he thought perhaps my husband is deficient in that chemical and that someday there may be a way to test for that and administer the chemical.

All that being said, Mike now has RLS and neuropathy, which is almost totally controlled by Lyrica.

[KTangel]

There is no hard evidence as to what causes RLS. For me, it definitely is related to the kidney failure. It went away when I got a transplant, and the nerves all grew back and I regained feeling in my feet. The horrible tingling, pins and needles, and sensitivity went away as well. Ask the doctor about gabapentin, it has done wonders for me, I cant rave about it enough! The only downfall is it is removed when you dialyse, so the sensations may return after dialysis. Just make sure you take it as soon as you get home, so it has time to kick in before bed time. You only need to take it on dialysis days (after dialysis).

Hubby's twitching also started after his kidney began to fail. He has explained to me that it feels like he is about to crawl out of his skin and the more he tries not to move the more he needs to. I could not imagine! I fall asleep and do not move until something wakes me up (which I am a light sleeper-so that could be nearly anything!)

[angieskidney]

My twitching is getting really bad lately. Sometimes I go months without ever being woken up by it but the whole time Sandman has been here he says he has noticed that my legs jump around a lot while I sleep. Sometimes I am woken up and don't know why. I get about 4 hrs of sleep at a time. Now I know why. When I see the Neph this Wed I am gonna ask about meds. What is best?

[angela515]

I have had RLS since I was 12/13 yrs old. I didn't have kidney failure at the time, but I was just being dx'd with Lupus and my Lupus was out of control. At the time, they didn't have a name for RLS, and therefore, didn't have a medicine for it. I would stay up nights walking around so my legs would stop hurting and feeling as if I had to move them... all this and i'm 13 years old wondering what the hell is going on. Then it would come and go after months.. and when my kidneys started to fail, it came back more... when I got my transplant, my RLS went away. Since my kidney worked and my Lupus was in remission, no RLS. Then 2004, transplant failed (Lupus still in remission yay), so back on dialysis and RLS back... however, this time they finally got a name for RLS and medicines. I was taking medicine that were made for ppl with parkinsons disease (i forgot the name of the med), it helped a little but then it stopped helping. Then Requip came out, and I made my dr write me a script for it so I could try it... I been taking it ever since, and it helps me.. I dont have trouble with my RLS anymore. Please note though that there is research out there showing the blood pressure medicine "clonodine" helps with RLS too... and lucky for me, I take clonodine for my blood pressure, so I got that helping as well as the Requip.  Good luck.

[angieskidney]

My doc prescribed me Levodop whatever that is .. but it is usually used for Parkinsons.

[jedimaster]

They gave me clorazipam....

[angela515]

They gave me clorazipam....

Yes, thats what it was the doc gave me.