Anyone on here have Restless Leg Syndrome?

[DrowsyDan]

I had an in-lab polysomnography test 2 weeks ago, diagnosed with obstructive sleep apnea & periodic limb movement. Posted the results viewtopic/t64470/New-patient-seeking-input.html I'm having a titration test w/CPAP in a few weeks, in the meantime, the DR. has me taking Mirapex (pramipexole) for the RLS, which he suggested based on my limb movements may actually be more of a sleep problem then the apnea. I have read though that these drugs can produce a rebound syndrome, called "augmentation", where the RLS is actually made worse. I'm wondering what experiences anyone here has had with RLS in general, and Mirapex in particular.

TIA

Dan

[SleepingUgly]

You need to talk to kteague. She is the authority on this, and has personal experience with augmentation. PM her if she doesn't see this thread.

I don't have RLS (the syndrome) but I have had symptoms at times, like tonight...

PLMS are different than RLS. They can see PLMS on sleep studies. RLS is based on your self-report of sensations. I had PLMS diagnosed many times, and in my last sleep study they said they were not true PLMS but rather muscle contractions due to respiratory events. Who knows if it's true, as I was on 1200mg of Neurontin at the time of that sleep study (they said they eliminated the leg movements by 8cm of pressure). I am still on 800mg of Neurontin. I understand that dopaminergics are first line of treatment, but given augmentation, I wonder why doctors are so quick to prescribe them.

[Bright Choice]

I'm an RLS gal myself. Boy is that creepy! I managed it for quite a while with only magnesium (oral + bath + topical) and that has worked well. I am now also on Requip 0.5 mgm 3 hr b/4 bedtime + the magnesium. When I ease up on the mg baths or topical application, the RLS definitely flares. The combination works good. No augmentation so far, I think the magnesium helps me keep the dose of Requip low. My sleep doc says "when airflow is normalized with pap therapy, leg jerks tend to decrease" - that hasn't happened for me yet but I am awaiting a new Vpap adapt and will see how it goes once I get good therapy. I am optimistic that it will ease up. I also had low serum Ferritin. I am taking iron (along with vit C to help absorption and prevent constipation) - haven't had a recheck of Ferritin but need to do that soon. For part of my last series of psg & titrations, I omitted the Requip for the first part of one night. They said my leg jerks aroused me every 15 seconds - not so much fun!

A brochure from my doc says causes can be 1) genetic or 2) secondary due to vitamin/mineral deficiencies (low mg levels), kidney disorders, anemia (low ferritin levels), diabetes, neutological disorders, chronic back pain, medication side effects - specifically antidepressants and antihistamines, poor circulation in legs, pregnancy, aging and sleep disordered breathing.

[DrowsyDan]

Thanks for the replies. I've had RLS for some time, and have avoided the dopamine agonists for fear of augmentation, but I guess I'll bite the bullet & give the Mirapex a try. I have definitely experienced RLS worsening with antihistamines and other drugs. I remember a few years back, I had to take an early morning flight, so I took some Flexeril ("muscle relaxant") to help me sleep. I was virtually tap-dancing all night, and needless to say was not very bright & chipper for my trip!

[kteague]

My experience with RLS at one time was pretty much what everyone else reports to some degree. During my time on Mirapex and Requip my RLS did improve, but I'm not sure the meds did it because even though I'm off all those meds now, the RLS discomfort is nowhere near the intensity it once was. Even when I augmented on the meds, it was my PLMD that worsened, not the RLS. I tend to think my taking iron and other supplements (including magnesium) and making a focused effort to eat nutritionally helped my RLS symptoms. The PLMD is another story. There were periods when the meds were helpful, but they didn't last. Seems lately I keep reading that those with low ferritin are most prone to augmentation. If that is proven in studies, I would think doctors would change their approach and first resolve the iron issues before prescribing dopaminergics. But I wouldn't hold my breath waiting for all the docs to get on board with that. I currently use a TENS Unit to treat my PLMD. It's working better than the meds did for most of the time I was on them - and no side effects. All I can say is if you use them, try to stay at the lowest effective dose and give it some time between increases. In my use of them, I found that it could take at least a couple weeks before seeing any consistency in effect with changes, so some problematic increases may have been premature. Best wishes in figuring out what will work for your symptoms.

[NotMuffy]

I periodically to rarely use Mirapex and occasionally use magnesium, but I think the first thing you need to look at (at least in RLS) is adequate hydration.

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

[kteague]

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

[Madalot]

I am following this thread with great interest, but won't hijack it for my own issues. I saw this and lightbulbs have already started going off for me in a major way.

[Bright Choice]

I have some literature on use of magnesium. Pm me if interested. Also a note: you don't have to be anemic to have low serum ferratin levels.

[SleepingUgly]

I'd like to also note that you don't have to be low in ferritin to be iron deficient. That's why a full iron panel needs to be done, not just ferritin (e.g., serum iron, transferrin saturation, etc.).

[jbn3boys]

I was diagnosed with PLMD in my last sleep study. My ferritin levels were low, but I was not anemic. I am working on increasing iron (supplement and through food), and have been taking Mirapex for about 2 1/2 months. So far, I've had no negative side effects. I am hopeful that this will be a temporary medication, and that once the ferritin levels increase, and the cpap therapy becomes more effective, I will not need the meds anymore. But until then, I'm glad to have them.

And I cannot take magnesium, as it is a known migraine-trigger for me.

[Bright Choice]

And I cannot take magnesium, as it is a known migraine-trigger for me.

My "go to" source for mg info is Carolyn Dean MD and ND - author of "The Magnesium Miracle". She points out that blood serum levels of mg are not indicitive of levels of mg at a cellular level. She is very specific about which magnesium compounds work and which ones only cause further problems. She has said it is not the magnesium itself that causes problems but it is the compound that it is bound with.

She says: "The worst mistake you can make is to use a magnesium compound called "magnesium amino acid chelate", or "chelated magnesium", or "magnesium chelate". Why? Many times these products are in fact magnesium glutamate or magnesium aspartate products and they will very likely make you worse. I don't know why laws exist to allow companies to label their products as a "chelate". That makes as much sense as labeling a product a "magnesium compound" or a "magnesium complex", since the words do not tell the full truth.

Here are her mg recommendations: http://drcarolyndean.com/2011/01/magnes ... endations/

[Bright Choice]

I'd like to also note that you don't have to be low in ferritin to be iron deficient. That's why a full iron panel needs to be done, not just ferritin (e.g., serum iron, transferrin saturation, etc.).

Great info. Thanks. I wasn't aware of that.

[kteague]

Seems lately I keep reading that those with low ferritin are most prone to augmentation. If that is proven in studies, I would think doctors would change their approach and first resolve the iron issues before prescribing dopaminergics. But I wouldn't hold my breath waiting for all the docs to get on board with that.

Like I said, don't hold your breath, it's not new news, but how many doctors require resolving ferritin issues BEFORE giving Mirapex?

http://www.ncbi.nlm.nih.gov/pubmed/19200780
http://www.ncbi.nlm.nih.gov/pubmed/17921065

[SleepingUgly]

From the posts I'm seeing here, Mirapex seems to be given out pretty freely. I was actually on it about a dozen years ago, briefly. I can't remember if labs were done on me first. I'm sure it's not common knowledge that they need to check more than just Ferritin. My son had PLMS and we ran a full iron panel on him. His Ferritin was not low, but other labs were (transferrin saturation, and maybe serum iron), indicating iron deficiency. We repleted his iron, and on the next sleep study, he didn't have PLMS.