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Rls and plmd
#1
Sad 
Rls and plmd
I  I have been diagnosed with restless leg syndrome – RLs and periodic limb movement disorder .    I do not know to what degree, but it is never been affecting me until this week . 

 I will see my sleep doctor on Monday .  What can be done about this problem? 

 Would like to stick on vitamins . I would also be willing to try Clonopin or Flexeril. Does anyone know anything about these drugs 

 I tried gabapentin and it gave me a severe anxiety problem .

 I would also be willing to try Xanax .  

 What would work best ?

Mirapex seems very scary to me
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#2
RE: Rls and plmd
I am sympathetic and hope you find a solution. I tried gabapentin for a few months. my subjective sense is that it made rls worse (although I also have plm, I am not aware of it since it occurs while asleep, so can't comment on that).

might be too soon to be sure but I think my rls hasn't bothered me much lately and my wife tells she hasn't noticed the plm lately either. my unsubstantiated theory is that's due to increasing efficacy of treatment; getting the right machine modality and settings dialed in.

before pap I thrashed a lot. really a lot. rls, plm plus head roll, leg roll, kicking, arms thrashing, even punching myself in the chest. I recorded lots of really awful moaning, groaning, whining, complaining, swearing etc at same time. I think much of all that activity stemmed from the struggle against asphyxiation.

not saying I know anything about rls and plm or that they aren't real conditions on their own. just kind of wonder if maybe for some people they are a product of, or at least exacerbated by not breathing.
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#3
RE: Rls and plmd
Mouchet, I do understand what you are going through.
The other half say I used to kick her and thrash about a lot (I can't remember any of it, I was asleep) but I can only take her word for it.
There is not one drug works best for everyone and with me, when I started CPAP it settled down for the most part of it anyway.
I have since had another problem which caused a lot of nerve damage due to Chemo and I have to use Gabapentin in ever increasing dozes to keep my legs from trashing about and my right arm from either kicking her out of bed or punching her. I am surprised I have not given her a good clout during the night as sometimes I wake up and I am all over the place, the legs are bad enough, but with my arm flailing about, I am just surprised I haven't knocked her out. I have hit myself and trust me you do not want to be hit by me, so I found out the hard way!
Gabapentin is the one that controls my nerve pain and keeps everything under control, but as it causes anxiety attacks with you, it is a case of discuss it with your doctor.

I get so much of a problem with nerve pain that my toes even curl over and it is dammed painful.

I hope you find something that works for you, it can disturb your sleep a lot (though i know it is slightly different for me) but I do remember my legs moving when I was woken up to get moaned at!
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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#4
RE: Rls and plmd
(07-18-2018, 11:49 PM)Mouchet Wrote: I  I have been diagnosed with restless leg syndrome – RLs and periodic limb movement disorder .    I do not know to what degree, but it is never been affecting me until this week . 

 I will see my sleep doctor on Monday .  What can be done about this problem? 

 Would like to stick on vitamins . I would also be willing to try Clonopin or Flexeril. Does anyone know anything about these drugs 

 I tried gabapentin and it gave me a severe anxiety problem .

 I would also be willing to try Xanax .  

 What would work best ?

Mirapex seems very scary to me
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#5
RE: Rls and plmd
Hi, Mouchet
Hope you are doing fine. I would be glad to let me know your follow-ups.
I only rather recently knew this great blog. I am about to go for two years of CPAP (then autoset and vauto these days). Still learning, but found out some three months ago my main problem i had still to work out was RLS/PLMD, on top of severe flow limitation (this OK nowadays). So far, i tried iron, Mg, K,  L-Tyrosine, Pregabalin, Mirapex, and the legendary Clonazepam. I carefully take notes of everything on my therapy and plot on Excel graphs. Guess what? Thus Far, best outcomes on my "How do You Fell" rate ( 1 to 5 high), with good balance of side effects/benefits, was just 0.60 mg of clonazepam at bed time. Number of awakenings pretty much does not change, as the lowerings with Pregabalin and Mirapex, however their durations slow down a lot, which end up having very significant improvement in my daily quality (4.95 medium rate, compared to 4.0 for pregabalin and 3.0 for Mirapex, huge differences. I consider rate 4.0 as the boundary acceptable/non-acceptable). As I have recently moved to new EPAP min (6.6) and PS (4.2), the Idea is to give a new chance to Pregabalin; otherwise staying on Clonazepam until new experience. Currently, since some 10 days, i am on nothing, except for melatonin 6mg, clearing up things before new discussions with my doctors (i have three of them, basically for medications; CPAP, itself,with  support of blog like this and lot more on studies, is by myself).

Good luck.
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#6
RE: Rls and plmd
Count me as another "twitcher". I once kicked an 80lb Rottweiler up and over the foot board.

My twitching at night and the gawd awful ants under my skin RLS has decreased significantly due to several things.

"They" believe my RLS is triggered by sporadic low potassium and/or my body's response to potassium drops. Most of the time, I can eat a banana or other potassium rich food and the RLS will decrease.

I also take Magnesium (magnesium glycinate). Lots of it. I take it for my PVCs and we've noticed a huge decrease in the RLS and the night twitches. It also helps with my insomnia.

Make sure your doc does a blood work up to check for any deficiencies or overages.
Research Research Research the possible causes of RLS and PLMD and see if you fit into any of them. Maybe more than one.
Talk to your doc about diet and supplements instead of medication. Sometimes the side effects of meds is worse than what they're supposed to be treating.

There are several threads already on RLS and PLMD. Do a search for them and read through to see if anything pops out.
PaulaO

Take a deep breath and count to zen.




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#7
RE: Rls and plmd
I used to kick and thrash about all night, and getting started on Pap treatment was difficult, always kicking and not letting myself "relax" enough to get to sleep. Sleep Doc took some blood, ran some labs and asked me to take an over the counter iron supliment, wow what a difference this has made for me! 

I am not you and the solutions that worked for me may not work for you, but I did nag at my doctor enough about it and because I was persistant i actually got positive results!

Keep at it and good luck!

Sleep-well
"Right wrongs nobody" 
Mountain Charlie McKiernan 
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#8
RE: Rls and plmd
----------Paula, Shift worker, many thanks for the prompt replies and encouragement/hope on keeping on trying solutions out of supplements. Actually, I am currently taking Mg (dimalate 500mg), K (cytrate 100mg), lithium orotate (5mg), and iron (ferritin has already bumped from 54 to 77.1 ng/ml, last lab two months; maybe more today). Yes, indeed, those metals, combining with fine tuning on flow limitation controls, might have been producing some very minor improvements; looking forward closely.
Without knowing, I have been suffering with RLS/PLMD all my life, since I was fifteen (66 now), maybe earlier, almost daily. Relationships with flow limitation keep very intriguing, as I have been observing on my Oscar’s outcomes daily. Sometimes PLM’s clearly follows some few remaining ratty-flat-reduced flow rates; however most of the time they are independent sudden awakenings (I have sound-recorded some of them with a very sensitive low cost device). Therefore, pernicious PLM’s appear not having an ultimate solution out of FL controls.
I’ve already gone through some other threads; this appeared to me as having a more straightforward title.
All the best…
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#9
RE: Rls and plmd
mper6794, if I understand you correctly, I don't see a causal relationship between flow limitations and plm either. rather, what I see in my flow rate graphs are flow limitations following a sharp inhale. I know from reports from my wife and from audio recordings that the sharp inhale occurs with or instantly after a kick/jerk. this is often followed by a grunt, moan or groan of complaint (a flow limitation) and a more or less regular number of flow limited breaths until the next movement and sharp inhale.

I've come to think of these flow limitations as sort of self inflicted and therefore not 'real'. unfortunately, with asv, pressure support rises quickly to address these flow limitations that aren't 'real', leading to frequent disruption, arousal and leaks.

resolving plm is the obvious solution. in the meantime, my plan is to restrict pressure support from swinging as much by reducing the difference between min and max pressure support.
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#10
RE: Rls and plmd
-----Sheepless, I think I’ve got your point. I have just gone through in some of my days; it happens same thing (PLM >> wake up >> sharp inhale >> machine increases pressure). Actually, I had already realized this sequence of events many times; however always taken as not “real” as you said, once when such flow limitations come, one is already waken up anyway. Fortunately, for me, (VAUTO, EPAP min: 6.6, PS: 4.2, Max 12.8; FFM) this appear has not been a problem to work out. I empathize with you; hope you find a satisfactory solution.
Good luck
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