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Doctors' Answers to "Frequently Asked Questions" - Restless Leg Syndrome


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

[posted 08/25/1999]
Question: I am 52 years and over the last two years have been taking .15 mg permax daily for Restless Leg Syndrome. I would like to say, it has worked great. I have had RLS since a child and this drug is a wonder. My only question is, will Permax cause a reduction in a persons sex drive?

Answer: Not usually.

[posted 10/14/1999]
Question: After experiencing a year of unexplained fatigue ( and then almost falling asleep at the wheel) I sought out a sleep dosorder specialist who ran both the overnight and daytime nap test. He said I was "borderline" narcoleptic and put me on Ritalin 10mg X daily but he observed many episodes of restless legs syndome and has started me on a course of Parkinson type medications. THe Ritalin helps somewhat with the fatigue but the other meds make me dizzy and drwosy. My Dr. says the next step would be the use of narcotics. My question is this: would I be better off if I took a narcotic each evening to help me sleep soundly or continue taking Ritalin for the rest of my life? Actually, the last time I felt truly rested in the past year was when I was home recupping from foot surgergy but I thought the well-rested feeling was from being off from work ans not the fact that the narcotics meds were making me sleep soundly.

I am now confused. Ritalin or a narcotics to help me slepp?

Answer: A lot of patients take nocturnal narcotics to help with Restless Leg. Worth discussing with your md.

[posted 08/17/1999]
Question: DEAR DOCTOR

I HAVE JUMPY LEG SYNDROME AND I'M 32. MY LEGS ARE JUMPY AND IN PAIN MOST OF THE DAY AND EVERYDAY
RIGHT UP UNTIL I FALL ASLEEP. I USUALLY SLEEP WELL. HOWEVER, I CANNOT SIT STILL AND WATCH A MOVIE WITH MY WIFE, NOR CAN
I GO TO THE MOVIES WITHOUT MY LEGS FLOPPING LIKE FISH OUT OF WATER. THIS IS A VERY SERIOUS PROBLEM I HAVE AND I'M TRYING TO FIND
THE REMEDY THAT WILL PUT MY LEGS AT EASE. I HAVE BEEN DEALING WITH THIS FOR YEARS AND HAVE HAD ENOUGH. I AM CONVINCED THAT THERE IS TREATMENT
FOR SOMEONE LIKE ME BUT I'M NOT SURE WHAT IS THE MOST POTENT AND SAFEST PRESCRIPTION AVAILABLE.
I ALSO HAVE TO TIGHTEN MY LEGS AS HARD AS I CAN AND THEN LET THEM CONTRACT OR RELEASE JUST TO EASE THE PAIN.

YOUR ADVISE IS GREATLY NEEDED.


Answer: Restless leg syndrome is extremely hard to treat. We all have " success" stories that highlight one or another medication. Suffice to say that when there are multiple medications, there is rarely one that works. There is a long list to start with iron supplements, elavil, dilantin, nocturnal antihistamines, SRI antidepressants, diazepam is often used.

Restless Leg Syndrome
Question: As I was surfing your FAQs page on melatonin I discovered your recommendation of using melatonin for RLS. I wasn't looking up RLS and wasn't aware of the connection with melatonin. Anyway, this is beside the point. As I read the Qs and As I realized that I have the same experience in my legs as these people asking about RLS. But I also have ADHD and am being treated for it with methylphenidate. Besides helping me stay focused so I can read, follow-through better on routine tasks, and sequence my activities better, it also almost immediately relieves my leg fidgets. This makes me wonder if the people who asked the Qs about RLS might also have other ADHD symptoms. It also makes me wonder if methylphenidate might help RLS even if there is no other ADHD problem.

It only takes about 5 mg of methylphenidate for me to feel relief in my legs, and the relief begins to manifest in about 10 to 15 minutes. I take this dose just as I'm getting into bed, or if I've gone to bed without it and am lying there trying to stop fidgeting and can't go to sleep. I get up and take one, then go back to bed and read for a few minutes. In a very short time I notice this wonderful sensation of absense of this irritating phenomenon. As soon as I notice that my legs are no longer "crawling," I turn out the light, and the next thing I know, it is morning. It would be interesting to see some research on this approach to these people who present with RLS.

Answer: Thanks for the idea, I'm always looking for other treatments for RLS.

Restless Leg Syndrome
Question: I have, what I think is Restless Leg Syndrome. Have you ever heard of this? Do you have any suggestions on what I can do to stop the twitches in my knee? I do not want to take any medication. I am only 13 years old and my grandmother has had RLS for a long time also. I get it during the day and I can't get up in the middle of class. What can I do to stop the twitching?

Answer: Restless leg syndrome is reasonably common and always distressing. That is because we really don't have great treatment regimens for the problem. If you look in any medical book, you will see in excess of 15 different treatment protocols. That is because none work consistently. I would check with your doctor and start the long list of possible treatments for this problem. I have had some success with melatonin (available over the counter) and occasionally iron supplements will fix the problem. After that all the treatment medications are prescription.

Restless Leg Syndrome: Stopping Medication
Question:I am a 42 yr. female who has suffered from RLS for ~20yrs. and sought medical help after getting 1-2 hours sleep a night. RLS is hereditary in our family and follows generations, with me being the worst. Five years ago a neurologist set me up on Sinemet and sinemet cr. After adverse effects of the cr, I was left taken just Sinemet nightly up to 1,000mg.! Finally went to another Dr. and he put me on what he feels is the safest way to go with less side-effects: so for 4 yrs, I've been taking Sinemet (100-150mg.) and clonazepam (1.mg) nightly. I now average 8 hrs. & sleep like a LOG!! I can put up with some of the side-effects if it means a goodnight sleep, but I am afraid of the long term effects of these 2 drugs together. Am I taking too much drugs? Is there something new and safer out there?

Answer: RLS is tough because there is no clear medication which works. As a consequence, there is a long list of drugs to " treat" RLS. If it works stay with it. I doubt you will see any long term side effects of these drugs except that klonopin is addicting over time. Hence, do not stop it cold turkey.

Restless Leg Syndrome
Question: I have recently been diagnosed with Restless Leg Syndrome. I take 20 mg of Prozac a day. Will this aggravate RLS? I am now taking siniment with Klonopin a couple nights a week, but I still have trouble sleeping and keeping my legs still I believe I have periodic limp movement also. (I take siniment every night and klonopin 2-3 nights a week). I had the RLS only slightly before, but now it seems to have gotten a lot worse. Could it be the Prozac? My libido has suffered also, but not being depressed is much more important to me. I also suffer from anxiety and Prozac has helped me tremendously, but I could use a good night of sleep. Any help is appreciated. Is their anything besides Klonopin and Siniment that can be used for RLS?

Answer: Restless Leg Syndrome is an unusual syndrome in which patients feel as if their legs are twitching. There is a feeling of worms crawling under the skin and movement is necessary to alleviate the feeling. Unfortunately there is no current explanation for this syndrome and there is no very good treatment available. There are several treatments, which usually means that none of them are very effective. It is more common in renal failure patients, but the overwhelming majority of patients are healthy. Many patients have a mild underlying anemia and correction of the anemia (especially if Iron Deficient) is sometimes helpful. Valium or equivalent drugs are used to suppress the symptoms, but are rarely extremely helpful. I have had some success using melatonin in occasional patients.

Restless Leg Syndrome
Question: I have what we call Crazy Legs. I see now that it is finally being acknowledged as Restless Legs Syndrome (RLS). I was first put on Sinemet to help ease the movement in my legs but didn't care for the side effects, so my doctor has since put me on Clonazepam. I haven't noticed any major effects except that I have gained some weight. Is weight gain a common side effect with this drug? I have been on the Clonazepam since July. If this is a common side effect then I believe I need to explore another route for controlling my Crazy Legs.

Answer: Restless leg syndrome is common and difficult to treat. There are several treatments listed. This usually means that nothing works very well. I have had patients improve with oral iron supplements, sinemet (one of your options), klonopin (another of your options), and mellatonin. I would personally try the mellatonin, then the iron supplements. For some reason, women tend to get restless leg if iron deficient. Hence, treatment may be helpful (but constipating). I'm really not aware of weight gain with klonopin, but if that's you so be it.

General Information
Question: For approx 3wks now I have been taking Permax 0.05mg one tablet at 4pm and 2tabs at bedtime. In the beginning there was a difference, I could honestly say the "nervies" (as I refer to them) in my legs/feet had some "calmness". However, I regularly need to take lorcet (10mg - 30mg) throughout the night in order to get some sleep. I have been on several different medications (sinemet,neurontin,trifluoperaz,melatonin,ms contin,darvocet-n) non of which were effective. I have had negative reactions in the past with the use of klonopin,valium and xanax. My sleep specialist MD stated he has never seen such a bad case of rls. I am out of my mind with frustration and exhaustion at this point. The current medications of permax and lorcet are not fully effective. I have trying to be patient, I am walking many a mile every day and night these horrible "nervies" also have appeared during the day time. If driving I often need to pull the car over so I could get out and walk around in order to get a little relief. Do you have any other suggestions that my doctors have not yet tried? I really am desperate for some relief before I go out of my mind.

Answer: There is a long list of potential treatments for restless leg syndrome. This usually means that none of them is very effective. I have had patients with some relief with different measures; but, in general they are hard to predict and not 100% successful. One that is not listed on your previous list is iron sulfate which has been known to work on occasion.

General Information
Question: I have been suffering sleepless nights for about 20 years - only in the past 7 or so have I attributed this to RLS. Have tried ambien, vallium, many other drugs -- nothing helps. Took klonopen for about 2 years until it did not alleviate the sleeplessness anymore; also effected short-term memory. Recently tried mega doses of magnesium and potassium - no help; also GNC product called Silent Nights - containing valerian root - of course, nothing helps. I have mentioned to several doctors that I notice an intensity in the symptoms during my menstrual cycle. No one has commented about this. Is there any "sleep aid rx" available that may afford me some short term relief? I feel if I could just get one week of "normal" sleep (at least 4 hours continuous or more) I could continue for several months until I felt "at my wits end"

Answer: Restless leg syndrome is difficult to treat. As I have said before to other sufferers, when they are multiple treatments it usually means that none work very well. It doesn't sound that you have tried several possibilities. Small doses of propoxyphene or codeine are often very effective when taken right before bed. Some patients have major improvement on melatonin. Lastly, there is an occasional patient who improves on iron replacement-these are mainly menstruating females-worth a try.

Neurotin
Question: My 85 yr. old mother started taking neurontin for her severe restless leg syndrome. It has helped her with the pain that she has been experiencing but she was just diagnosed with Central Retinal Vein Occlusion. Is there any possibility that her declining eye sight be connected with the neurontin?

Answer: Neurontin is usually used as an anticonvulsant. It is occasionally used for other purposes, mainly chronic pain and restless leg syndrome-these are unapproved uses. The only listed hematologic side effect for this drug is leukopenia. But, you could contact the manufacturer Parke Davis 800-223-0432.

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