Anyone on here have Restless Leg Syndrome?

[StevenXXXX]

DR. has me taking Mirapex (pramipexole) for the RLS
I have read though that these drugs can produce a rebound syndrome, called "augmentation", where the RLS is actually made worse.Dan

I was diagnosed with RLS over 12 years ago when I had my 1 & only Sleep Study. Was given something different back then (don't recall the name) & was switched to Mirapex several years later because it was thought to work better.

Started out with 1/4 Mg of Mirapex & used that for a year or so.
But, because I was having some daytime RLS, was upped to 1/2 Mg of Mirapex. Both 1/4 Mg & 1/2 Mg are considered very low doses. Much larger doses of Mirapex are used to treat Parkinsons.

Have been on the 1/2 Mg of Mirapex for several years now.
Have never had any augmentation.

Blood work to determine iron level was done for the Sleep Study, when I was switched to Mirapex, & again when they increased the dosage. Low iron level is the first thing they look for when they detect RLS. Only if the iron level is sufficient will they prescribe Mirapex or some other drugs that they also use.

Mirapex (or other similar drugs) must be taken long enough before bedtime to allow enough time for it to work. I find that I have to take my Mirapex at least 2 1/2 hours before bedtime for the RLS to be totally controlled by the time I get to bed. I have taken it as much as 5 hours before bedtime & it's effect still lasts all night long.

I never have RLS during the day unless there are long periods of limb inactivity & that occurs so rarely, it is not worth treating.

The least amount of Mirapex you take, the less chance of augmentation.

[SleepingUgly]

Not only should a COMPLETE iron panel be run, they should also test folate and B12 (is it B12? I keep forgetting...and magnesium?... I've written this before when I looked it up, and now I've forgotten it).

[Bright Choice]

Not only should a COMPLETE iron panel be run, they should also test folate and B12 (is it B12? I keep forgetting...and magnesium?... I've written this before when I looked it up, and now I've forgotten it).

Great info. I will also ask for B12 and folate. It is my understanding that blood tests for magnesium levels will not show depletion which is occuring at a cellular level. In other words, you can be experiencing symptoms of magnesium depletion but have a normal serum magnesium when a blood test is done.

[StevenXXXX]

Here is a "fact sheet" from the National Institute of Health on RLS

http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

[Rebecca R]

Although given the timing of PLMs (~25 second interval) one can easily argue that circulation plays a role in there as well.

Can you please explain the connection between the timing of PLMs and circulation? I've heard it said that circulation could play a role but never knew the explanation.

Kathy

I am curious to hear the circulation explanation as well. I also have Reynaud's, which is supposedly a harmless circulation condition. I find that when I do a lot more physical work or exercise more than usual, the RLS tends to act up in the early evening.

I had terrible RLS augmentation on Mirapex (I had restless arms, legs, shoulders...everything) but so far not with Requip and it has been several years. My subsequent sleep studies showed that the meds tend to wear off several hours before morning and the PLMs start up again. I wish there was an 8 hour time release version. I researched a time release patch, I think you mentioned in a thread a while back, kteague, but it is not available in Canada, and the drug company told me they have no plans to release it here. Sigh...not a large enough market I suppose.

It is great to hear how well the tens is working for you.

[elena88]

Well,
My story is a bit different but I will share it just in case..

I was diagnosed with RLS by my sleep doctor (pulmanary specialist) however i do not have periodic leg movements.

I had the burning skin symptom on my legs and arms.. and the doctor said a lot of people dont know its not just
your legs that can be symptomatic.. and that having RLS does not mean you have PLM which can be a component
of RLS...

Anyway, I had this burning every morning when i woke up, and of course I had severe apnea this entire time too.

HOWEVER.. i am symptom free now, and I have done nothing different except now I sleep thru the night like
a baby... since I have been sleeping normally the RLS has disappeared, so I dont know how, but it seems the
RLS was related to my horrid lack of any sort of quality sleep... which can cause so many problems, and maybe
vitamin deficiencies as well. I dont know, all I know is that I had it for as long as I can remember, and now its gone.

[SleepingUgly]

What were your oximetry results without CPAP sleeping in your prior positions vs. your oximetry results without CPAP now sleeping on your stomach?

[elena88]

oh gee, I dont know where they are, it was last year.. but I remember my results were much, much
better sleeping on my tummy..
I just got lucky, I have this gigantic tongue, a tiny mouth, and twenty eight teeth, and if I can get
that tongue to fall forward, all is well..

There are so many causes for sleep apnea, I just happen to be able to wrangle the thing that has caused me
the biggest problem.

[shelly56]

I have rls also the dr. put me on neurontin and that has helped greatly

[SleepingUgly]

I was told I had PLMS in previous sleep studies that failed to diagnose SDB. While on 1200mg of Neurontin, I had my last sleep study in which I was diagnosed with OSA and I was told that my PLMS were not true PLMS, but were muscle contractions associated with respiratory events, which were eliminated with CPAP on titration. Still, I keep wondering whether I have "true" PLMS that the Neurontin masked on the sleep study. I tried to get off Neurontin, as I don't think it's doing much for my EDS (even though I only take it at night), and could only get down to 800mg before I started having pain. I'm still hoping to get off it.

I was once put on Sinemet, but it made me immediately sick, and I was on Mirapex for a stint at one point. I wonder if I was given dopaminergics for what were not PLMS?! Hmm.

[Bright Choice]

I had a conversation with my gyn md and we talked about cpap which led to talking about RLS. She mentioned that she had a couple of patients who had varicose veins treated and their RLS went away. I had totally forgotten about it until I got a brochure in the mail from the md she referred me to. Then UncleBob posted a thread about sclerotherapy and varicose veins and RLS.

Here's that thread: viewtopic.php?f=1&t=64848&p=605394&hili ... py#p605394

I don't have obvious varicose veins and the procedure doesn't sound like something I want to explore but I am curious to know if any others here have had any experience with varicose veins and RLS. I know that people experience RLS differently, but what I experience doesn't seem like it would be from varicosities.

Thanks!

[JohnBFisher]

I also have RLS. I use Ropinirole HCL (Requip). I fortunately only need a fairly low dosage. My biggest problem is when falling asleep. The Ropinirole works well. If I forget to take it, I find my legs are active non-stop.

[Bright Choice]

I also have RLS. I use Ropinirole HCL (Requip). I fortunately only need a fairly low dosage. My biggest problem is when falling asleep. The Ropinirole works well. If I forget to take it, I find my legs are active non-stop.

My situation exactly. I take 0.5 mgm Ropinirole. I had to omit it for one of my sleep studies and it was not pretty! I mentioned to the tech that I hoped to get off of it once I got my breathing stabilized. She did not look all that optimistic. I take it that did not happen for you.