Restless Leg Syndrome

[library teacher]

Yesterday I went for a CPAP follow up with the nurse practitioner. She asked me how I was doing and I told her that I was sleeping all night with my mask now, but my average from starting date to now (about 81 days) was 5 1/2 hours. I told her I could not feel a whole lot of difference from when I started CPAP to now. She said that the doctor had written a note that if I was not better I should start taking REQUIP for restless leg. The sleep study showed that I had RLS.

Now, I really don't want to start taking another pill if I don't have to. My sleep apnea (REally hypopnea) was moderate. I believe the RLS is moderate also. Have any of you had experience with taking REQUIP? Comments or suggestions?

[SheZAAM!]

I have RLS, but I don't take anything for it. I've never even mentioned it to a doc.

Just because a doc prescribes something, doesn't mean you have to take it.
I can't tell you how many Vicodin prescriptions I turned down when I was a mountain biker (and frequent crasher).

[kteague]

There was a post just recently about exercise improving RLS.

Did your doctor have any iron studies to include a ferritin level checked? Not all cases are the same, but low storage iron is thought to be the culprit in some. A routine CBC does not provide the needed information.

About your sleep study, what did it say about PLMs? Were you also diagnosed with Periodic Limb Movement Disorder (PLMD)? There are things to be aware of if you have limb movement issues. If you had PLMs causing arousals, it may be that your OSA did not fully manifest during the study. On the flip side of that, apneas or hypopneas that cause arousals can prevent limb movements from fully manifesting during a study. It's possible that your moderate apnea and limb movements exhibited in the study don't show the full picture. In my opinion it is especially helpful for someone in your position to have access to treatment data to help determine if their OSA treatment is therapeutic. Takes some of the guesswork out when one still is tired or still not sleeping well.

Just saying that I don't blame you for not wanting to go straight to meds without more information. I do take Requip, but I have a known and proven need for meds. Some more investigation may help clarify for you what your personal needs are or are not.

[Songbird]

I have both RLS and PLMD (periodic limb movement disorder). My sleep doc prescribed 0.25 mg of Mirapex an hour before bedtime, and that has taken care of both conditions for me. While I'm never in favor of throwing chemicals at things just for the fun or convenience of it, I do think they have their place. Only speaking for myself, I'm very happy to take the Mirapex. In my opinion, ALL sleep disruptions need to be eliminated whenever possible, and the Mirapex has a good history of very few side effects. I've had none. As Kathy asked, were you evaluated for PLMD during your sleep study? Her suggestion about the iron study is a great one, too. From my viewpoint (as learned at Snoredog's feet), anything that causes discomfort during waking hours (such as RLS) is more than likely going to cause discomfort during your sleep, and that's called a sleep disruptor. The fewer the sleep disruptions, the better the sleep and the better the health. In my opinion, it's worth taking medically overseen chemicals that have been proven to work well in order to sleep well. JMO. Good luck on whatever you do/decide.

Marsha

[Debjax]

My husband also has RLS, and because of the huge amount of other drugs he has to take for his heart, does not want to take another med regularly. He has requip, but since his RLS comes in 'waves', where it will go active a few days then dormant for awhile, he only takes the Requip if he feels it coming on (he says he can tell before he goes to bed if it's going to act up). The sleep doc is OK with that, and it works for hubby.

[Debjax]

There was a post just recently about exercise improving RLS.

Did your doctor have any iron studies to include a ferritin level checked? Not all cases are the same, but low storage iron is thought to be the culprit in some. A routine CBC does not provide the needed information.

Sleep doc said same thing and wrote an order for hubby to have it checked. Problem is, most insurance won't pay for the lab on that test for sleep disorders, so you have to write it as r/o anemia or something like that.

[Sleepy Boy]

I have RLS, but not everynight. I tried Requip and it made me worse. My Dr. then put me on a low dose of Mirapex, and that works good for "me". Like Debjax's husband, I can feel it coming on at night while in my chair. When I do feel it, I take my pill. When your legs are thrashin' at night-I prefer the pill..Thanks, Larry...

[kteague]

Some more thoughts ...

A bit more on the meds. For those whom a low dose corrects the limb movements, it's not so likely there will be side effects. When the dose needs increased, it is done in increments to give the body time to adjust and then see if the increase is effective. It took me a few months before my current dose began to be significantly effective. If my dose had been increased again too soon, I might have been at greater risk of side effects needlessly. These dopamine meds are almost expected to over time have a reduced effectiveness, resulting in a need to increase the dose or switch meds.

These meds come with warnings to not stop abruptly, so I'm a bit perplexed why a doctor would advise it is ok to take them on an as-needed basis. Maybe the low dose makes the difference. As far as the side effects, in the years I was on Mirapex, I had not one good day. Sure, in the early years I was just grateful for some relief from the limb movements so I could get some sleep, but that came at a price. It wasn't until I was off it that I realized the always present sick feeling in the pit of my stomach that was helped only by eating was gone. Went back on it - feeling came back. Went off it - feeling went away. Add to that the wild flailing and compulsive or addictive behaviors at higher doses.

I accept that these meds can be necessary and even a godsend, but just want to be sure others know to not take them lightly and be attuned to early signs of trouble. The problem with addictive behaviors is that they are usually skillfully hidden until they cause a crisis. The class action lawsuits were filed for a reason. The only thing that's changed is the meds now come with warnings. I used to take meds with little concern for listed possible side effects, thinking it probably wouldn't happen to me. Not any more.

Ok, off my soapbox.

Debjax - Thanks for that tip on the lab test!

Kathy

[Sleepy Boy]

Hi Kathy: I guess I don't follow the directions on the bottle. I should be taking it everyday-but don't. I'd say maybe 3-4 times a week depending on my legs...If I get out walking, I seem to not have as much trouble.. Thanks for the good information. Larry