restless legs, too

[lvehko]

Just had my first follow-up w/ the sleep doc. At my first sleep study, I had a lot of leg kicks during the night, and he suggested that if they continued after I started CPAP, I might want to think about medication for restless leg syndrome. Well, I saw my second sleep study results, and the leg kicks are just as bad, so I'm trying Mirapex. The problem is that I don't seem to have RLS symptoms very often during the day, so he says the thing to watch for is if I feel more rested after being on the Mirapex for a bit. Since I'm getting pretty good results from just the CPAP already, he's not real concerned about it, but hey, if I can get even *better* sleep, why not?

Anybody here take Mirapex? Got any stories for me?

Min

[kteague]

Hi. I've been on Mirapex for a few years for RLS and PLMD. Lori on here uses Requip for hers. If you search on those medication names you'll find tons of recent discussion about it. If you decide to go this route, please start off at a very minimal dose and increase it over the course of a few nights, only as much as you really need. You may find that what you thought was your mask waking you up so much turns out some of the time to be your leg movements waking you enough to tune into your mask. I can't tell you what a relief keeping the legs still at night was. I'd venture to say when you're more still you'll have fewer problems with leaks. I've had my ups and downs with Mirapex, but I have to say for the last few months when I go to sleep I wake up a few hours later in the same position. That borders on a miracle for me. Best wishes.
Kathy

[Guest]

Anybody here take Mirapex? Got any stories for me?

Minerva, use the search function for Mirapex for previous posts from people who have used it. There are numerous entries on it.

Hope this helps.

[lvehko]

Hmm

I did do a search, but didn't find too many entries discussing Mirapex.. the weirdest thing I've read about it is that it's linked to an increase in compulsive gambing...??? Pretty surreal, if true.

M.

[Guest]

Min, I clicked on the cpaptalk search icon and typed in Mirapex and there are 75 previous posts on it.

[Paul B]

Hi Minerva,

I use Requip for PLMD at 0.50 mg and, for the most part, it seems to fairly well control the jerking movements I have at night. Requip requires a higher dosage than Mirapex, maybe 3 to 1, although I can't remember for sure.

I go see the neurologist tomorrow, and I'll see what she has to say about my current dosage. My RLS has disappeared for over a year now, thank God, and I'm not sure if it's because of the Requip, starting therapy for sleep apnea, losing weight, or a combination of all these things.

Paul

[Snoredog]

I'm trying to recall this from memory, but I was doing some major surfing one day not too long ago for some medical research, ran across this letter being submitted to FDA for approval as a treatment for RLS. As I recall, it found the main cause of RLS to be a mineral deficiency, mainly magnesium and chromium, more specifically the latter. I'll try and find the letter again.

But you might want to check with GNC and their comprehensive mineral formula called Multi Mega Minerals. They are cheap at $9 and worth a try. I take them because they seem to help me with controlling GERD, but if they stop your legs from twitching also it might be worth a try. I also take them at times because they and vitamin C seem to slow down the twitches I used to get right after having a stroke. Was told by neuro muscles can twitch if they don't get a signal from the brain. I used to have to go in for high res MRI brain scans, they would have to put me in that cage thing to keep me from moving or the MRI came out blurry. I no longer get the twitches so I can only hope those neuro receptors remapped themselves.

[Offerocker]

..

[MandoJohnny]

I was diagnosed with RLS on my sleep study. But I am skeptical. I have almost no daytime syptoms and my wife, who is a light sleeper says she has never noticed me kicking around at night. I was doing well on CPAP with no RLS meds. But then the doc put me on Requip, but it made me groggy during the day. Now I am on Neurontin, but it seems to make my sleep very restless.

So have started my own, home grown, RLS study. I have a video camera with a low light mode. It is just like night vision goggles. I am videotaping myself sleeping. I just took a nap with the camera on. For a half hour, I did not move. I mean it was creepy. I had make sure the camera was actually playing and I was not looking at a still photo. But I could see my chest moving slightly to breathe, so I know it was working. But my legs did not move, twitch or anything. Then I rolled over on my side and slept for another half hour, again with no movement.

I am going to try it tonight. In LP mode, I will only get the first four hours, but that should be enough. If I have no leg movement at all, I am going to try it again without the Nuerotin. I like my doc, but I think he is wrong on this one.

[kteague]

MandoJohnny-
On what did your doc base his RLS diagnosis? Did your sleep study report show lots of arousals from limb movements (LM's) or periodic (rythmic) limb movements (PLM's)? Folks with restless legs generally complain of an uncomfortable sensation when sitting still that is lessened by moving around. If neither you nor your wife's complaints led him that direction, knowing your test results could be helpful. For the first several years I had RLS & PLMD, I was not aware of the repetitive motions in the night, because by the time I woke up, it was over and I just thought I was changing positions. Your videotape will be the key. Can't speak for all patients, but my movements were worst in the wee morning hours when in the deep stages of sleep. But 4 hours should certainly catch you in all stages of sleep. Please let us know how that video goes.
Kathy

[rested gal]

Here are some interesting discussion links:

Finally a few #'s from my sleep study, help, please
sleepydave wrote: Limb movements (LM) are random jerks, movements, etc. without a pattern, periodic limb movements (PLM) are a specific disease entity. LMs are usually the result of something (an arousal, secondary to perhaps a respiratory event, etc.), PLMs cause the arousal.

OSA and PLMs are 2 different things. PLMs will not go away with CPAP. If they do, then they weren't PLMs, they were LMs.

Periodic Limb Movements topic started by sleepydave, includes PSG graphs

Yet another sleep study, but give me your comments, please

Results in a month?

CPAP and sleep study interpretation--I need help!

Finally got my study results

[sleepy gal]

Hi, I also have RLS and periodic limb movement disorder. I am currently taking .25mg of Mirapex 3X daily, along with ultram. Initially I found relief with .125mg X a day. I had to increase dosage to almost 3mg after several years as it wasn't working as well. I then stopped it and tried almost every other drug used for RLS/PLMD none of which were very helpful. When I went back to Mirapex after not taking it for a while, it seemed to work much better.

Hopefully it will work for you with no problems, it does for most. But if you do have to increase it for it to work, you might want to consider a "drug holiday" which might help it work again.

Good luck.

[MandoJohnny]

My sleep study showed like 40+ leg movements per hour, both without CPAP and later with CPAP. But that had been after an unusually long, tiring ans stressful day and also the doc gave me Ambien for the sleep study, to make sure I slept. But I sometimes react stragely to new meds. There were no indications that the doc told me though, that the leg movements led to arousals. Since the leg movements continued under CPAP, the leg movements must not have led to arousals, because I did very well under CPAP.

Of course, the study also showed I had severe apnea. But I don't have any other symptoms of RLS, my wife doesn't notice anything and the RLS medications seem to have negative side effects for me. Also, this first video test showed no leg movements. I mean nothing. My legs were like logs. I should also mention my stats from the CPAP machine are consistently good AHIs are always in the 1-3 range, leaks are in the .2 to .4 range.

I hear you when you say that more PLMs are in the wee hours, but interestingly enough, I don't have any problems then. The sleep problems I'm aware of all seem to be in the first few hours of sleep. I will report back when I do the video at night.

[Offerocker]

I hope you haven't retired for the evening yet, MandoJohnny...if you have any DARK chocolate handy, eat some before going to bed (unless you have acid reflux). There is something in semi-sweet/dark chocolate that triggers PLMDs.

[lvehko]

[quote="MandoJohnny"]I was diagnosed with RLS on my sleep study. But I am skeptical. I have almost no daytime syptoms and my wife, who is a light sleeper says she has never noticed me kicking around at night. I was doing well on CPAP with no RLS meds. But then the doc put me on Requip, but it made me groggy during the day. Now I am on Neurontin, but it seems to make my sleep very restless.

So have started my own, home grown, RLS study. I have a video camera with a low light mode. It is just like night vision goggles. I am videotaping myself sleeping. I just took a nap with the camera on. For a half hour, I did not move. I mean it was creepy. I had make sure the camera was actually playing and I was not looking at a still photo. But I could see my chest moving slightly to breathe, so I know it was working. But my legs did not move, twitch or anything. Then I rolled over on my side and slept for another half hour, again with no movement.

I am going to try it tonight. In LP mode, I will only get the first four hours, but that should be enough. If I have no leg movement at all, I am going to try it again without the Nuerotin. I like my doc, but I think he is wrong on this one.