Patient letters on RLS symptoms and remedies- Page 47


Kicking RLS/PLMD Patient

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.



Sent: Friday, April 04, 2003 12:31 PM
Subject: RLS, Sinemet and fluid retention?
I recently did a sleep test for sleep apnea where I was required to fill out a questionnaire.   Long story short, the questions they asked about my legs led me to your web site which helped me to understand I have RLS.  I am a 35 year old male and have always had it so I thought it was normal to kick big holes in the sheets and blankets.
Luckily I found a doctor that is somewhat knowledgeable about RLS and I have started taking Sinemet 100/25.  It's only been 2 days but it is definitely helping (no tingling or obvious urge to move and I feel relatively refreshed in the morning so far) but... I am still jerking awake especially while falling asleep. 

I'm going to give this Sinemet a try for 30 days but if the jerking doesn't stop should I consider increasing the dose or switch to one of the other Parkinson's drugs you recommend instead of Sinemet?  Also, I am retaining water, is this normal from Sinemet and does it matter?

Thank you for the very helpful site!!
Rob W.

Medical Reply

You may need a larger dose of Sinemet to relieve both the RLS and the PLMD (leg kicks).  The problem is that with the larger doses, Sinemet causes worsening of RLS (augmentation and rebound).  It is much better to take Mirapex or Requip which rarely cause these problems.
Water retention is not a usual side effect of Sinemet (or other Parkinson's disease medications), but is generally not a concern in patients in otherwise good health under 65 years old (or even older).

Sent: Saturday, April 05, 2003 3:31 PM
Subject: Thiamine

I had been a member of the RLS support group on-line a few years ago but I cannot find it here on the RLS web site.

I want to advise the group of something my neurologist told me about. He advised that I try Vitamin B1 or Thiamine.  I started taking 2 ( 100mg) pills and the symptoms were reduced by about 95%. Just wanted to pass this on.

Gloria B.

Medical Reply

Many RLS patients have tried various vitamins (including B1 which is thiamine) generally without success (likely less than 1%).  The B Vitamins are all water soluble so when taken in excess, they are simply excreted in the urine.
I will include this on our website to see if others can benefit.

Sent: Monday, April 07, 2003 8:46 AM
Subject: tramadol and RLS
I am a 44 year old woman, without obesity or risk factors for apnea. I finally recognized myself as having RLS and PLM about a year ago. I never knew what it was before. Tramadol (Ultram) 25 mg at bedtime and sometimes another 25 mg earlier in the evening, depending on what I am doing (plays and quiet dinner parties are torture without it), works well for me.

I can rest without the constant twitching, etc I had before. I wake feeling rested now. However, I still sometimes have daytime drowsiness. I am usually unable to read anything without falling asleep. I even fall asleep when reading out loud to my son. I will wake myself up as I hear words coming out of my mouth but don't know where I am on the page.

I infrequently feel very drowsy when driving, even short periods of 20-30 minutes, and have to fight to stay awake. Sometimes at work, I would feel so sleepy, I would go into the bathroom, close my eyes and dose off for just a few seconds, minutes to try to get relief. That usually does help but is really annoying. Caffeine sometimes helps too.

Anyway, I have toyed with the idea of having narcolepsy, but I never uncontrollably go to sleep, don't have the cataplexy, etc - just intense drowsiness and the ability(!) to fall asleep at the drop of a hat if I sit still very long. I have never had a sleep study but have resisted due to cost.

Is a sleep study of any value? If I have symptoms of RLS and PLM and it is relieved by tramadol, what will the sleep study tell me? If I do a sleep study, how long would I need to be off the tramadol to not effect the results? A sleep study does not help diagnose narcolepsy, does it? Is there anything else that could be wrong? Is there any problem with taking tramadol long-term? Any reason I would want to switch to Mirapex? Is it reasonable to switch to Mirapex without a sleep study and see if the daytime sleepiness abates and then, if not, do the study?
A lot of questions. Sorry. My doctor is sympathetic but not too knowledgeable about this. Thanks for your help.

Molly J.

Medical Reply

Tramadol is a reasonable drug for RLS but may not be as good for PLMD (which could be the cause of your excessive daytime sleepiness).  Mirapex is a better RLS drug and a much better PLMD drug than tramadol. 
It might be reasonable to change to Mirapex and increase the dose until your RLS and daytime sleepiness gets better.  If you still have daytime sleepiness despite a reasonable dose of Mirapex (about .5 to .75 mg), then a sleep study would be in order.  Narcolepsy (not all have sleep attacks much different than you describe) and sleep apnea (occurs even in thin people) should then be ruled out.

Sent: Tuesday, April 08, 2003 12:29 PM
Subject: RLS, Sinemet and decreased sodium intake
I started with RLS about 8 years ago.. tried muscle relaxers for two years with no relief.  A neurologist recommended Sinemet. RELIEF at last!  Must take at least an hour before going to bed. ( I found it acts as a diuretic and I urinate a lot in about an hour after taking med. 

Still didn't stop daily problem of sitting for any length of time and developed especially problems after lunch of high sodium lunch.  after years of apologizing to clients for having to stand up and complete interviews I finally tried watching my sodium intake and now seldom have RLS as long as I take Sinemet an hour before bedtime.  Try watching sodium intake and see if it helps over time.

Been great for 3 years.  But also know without Sinemet I can forget sleep until wee hours of morning.  At one time I went with about 3 hours of sleep and was working 7 mornings a week.. After 3 weeks I was consuming anything I could get my hands on to sleep.

Someone left some type of liquor in the refrigerator. I am not a drinker)  I swallowed it down holding my nose, it tasted like drinking antifreeze!  That was when I went for help but my family doctor didn't know what to do so tried muscle relaxers, several, all but one put me to my knees, felt numb in places but no help for RLS. 

Try Sinemet at night and watch your sodium intake. 


Medical Reply

Sinemet is alright at low doses, but can markedly worsen RLS when taken at more than 2 of the 25/100 tablets per day.  Mirapex or Requip works better and can be taken an hour before you sit in the daytime.

Sent: Thursday, April 10, 2003 1:34 PM
Subject: RLS

I was diagnosed with RLS several years ago and have used Sinemet from the beginning.  If I am even late with one dose, the restlessness takes over, moving from my legs up into the abdominal muscles and one time even into my chest and throat. 

I am afraid to think what would happen if I ever ran out of the medicine .  At one point a doctor told me that all I had to do to cure my RLS was to discontinue the Paxil I take for anxiety.  Wonder which is worse - anxiety or RLS?

Thanks for listening,

Medical Reply

Paxil may worsen RLS, but may also not affect the disease or sometimes even can make the RLS better.  They only way to figure out what it does to you is to stop it and see what happens.  If Paxil is worsening your RLS, then one of the other medications may work better (Serzone, Wellbutrin for example).
Sinemet is not a good medication for RLS if you are taking more than 2 of the 25/100 tablets per day.  Mirapex or Requip are better.

Sent: Saturday, April 12, 2003 2:12 PM
Subject: Need Help, Please, for 82 Yr Old Mother

Thanks for this great website.  My Mom is 82 and has a severe case of RLS and getting worse.  Don't know how much more she can take.  Not only the legs, but arms and whole body jumps.  The nights are really bad and afraid she'll take a fall.

She eats Neurontin and also takes Klonopin and Tylenol with Codeine.  Been on the Neurontin for quite some time.  Takes some Lamectil too.  She's tried Mirapex, but that didn't seem to agree with her although she may have taken too much too fast. Sinemet augmented her symptoms. 

Last time at the doctor, I asked if there was anything new on the horizon; he said, no.  Mom is pretty healthy, no high blood pressure. 

Jill S.

Medical Reply

It may be worth trying Mirapex or Requip, but increasing it slowly as tolerated (usually not quicker than on a weekly basis, and then possibly by only 1/2 of the smallest tablet).
If her RLS is that bad, I would have her stop the Tylenol with codeine (which is only a fair narcotic for RLS) and change to a better one such as methadone.

Sent: Sunday, April 13, 2003 6:15 PM
Subject: Severe RLS, should I start Neurontin?

I was wondering if I should be on Neurontin.  I have had fibromyalgia and chronic fatigue and restless legs (legs, feet, forearms and hands) for years but it is getting so bad I sometimes want to die because the pain and burning (sharp metal jaggy pain, ice pick pain, numbness , jerking, punching, and kicking. 

I am alone when I do this - on the couch, in bed etc.). I isolate myself because of this terrible pain and the horrible feelings in my muscles and of course, arms, hands, feet, and legs.  I hardly ever sleep.  I cannot concentrate very well on anything else for very long because of these symptoms. 


Bonnie M.,  Lethbridge, Alberta, Canada

Medical Reply

First, have your doctor prescribe Mirapex or Requip (as per our RLS Treatment Page) If that does not help, then Neurontin may help somewhat.  For severe RLS (which is what you are describing), you will likely need a strong narcotic (such as methadone) in addition to Mirapex/Requip or Neurontin.
Sent: Monday, April 14, 2003 7:19 PM
Subject: Zyprexa helps my RLS!
I have had RLS for about 5 years.  About 4 months ago I started taking Zyprexa for depression.  After several days I realized my legs were not jumping.  I was currently on Ultram and Xanax.
It has been 4 months since I have taken anything for RLS and my legs do not bother me anymore.
I don't know if the medicine it will help others, but I just wanted to share this information with you.

Medical Reply

Antidepressants more often worsen RLS, but a minority of RLS sufferers improve with this class of medications (and clearly you are one of the lucky ones).

Sent: Monday, April 14, 2003 7:16 PM
Subject: PLMD?
I've been wondering why someone would have PLMD all by itself? What kinds of maladies cause it? I have RLS, which .15 mg daily of pergolide relieves, but lately my bigger sleep problem is related to my husband's 'kicking,' as I call it. I'm beginning to think he has PLMD. He claims it's the nerves in his back making leg cramps and so he moves his legs, but I don't buy it because he does it unconsciously.

There are nights I want to cry because there's no place to go if my kids are home and he's doing these intermittent kicks and then 'poom!' -- his leg hits the bed and I'm startled out of the sleep I'd almost achieved. I start to drift again and then 'poom!' -- the bed shakes me awake. After 10 of these there is no hope of sleep and one of us goes to the new couch which -- uh, oh! -- has turned out to be too short! 

Seems like this happens to him mainly in the almost asleep stage (though maybe it's deeper than that because he doesn't wake up if I say something). He had a sleep study and was diagnosed with sleep apnea about 8 years ago (he didn't do much about it), but didn't mention anything then about PLMD. It seems like a recent development to me -- as in just a few years -- but I don't remember lots of things well. I'm working on getting him to go in for another sleep study. He's not crazy about the idea, having gone through it once already.

I was also wondering if the CPAP machine has only become available within the last 8 years? When he had his sleep study, they only gave surgery as an option. Could the sleep apnea be related to the PLMD (if that's what it is)? He definitely stops breathing at different points during the night.


Medical Reply

We do not know why people have PLMD with or with RLS as the cause of these diseases are completely unknown.
If your husband is not sleepy during the daytime then he does not need anymore investigation for sleep apnea or PLMD (as in this case, these problems are not occurring frequently enough to be clinically significant enough to disturb his sleep).  If he is very sleepy despite CPAP (which has been available since about 1985), then he needs a repeat sleep study.
The PLM's that bother you can be easily taken care of (without even given your husband medication).  Simply get twin beds and separate them by about 4-6 inches at bedtime, and any of his kicks will not be transmitted to your bed.

Second letter from Margaret

Sent: Monday, April 14, 2003 7:41 PM
Subject: Pergolide concerns?
I just discovered the Mayo Clinic report on the three women who had heart valve replacements, apparently as a result of taking pergolide. I think I understand the basics of the information cited -- about its being an ergot derivative, that this was the only thing they had in common, that they need to do a cross-study of more people to see just what percentage of people have this side effect are. The woman with RLS (the other two had Parkinson's) had taken a total of 1.5 mg total a day (6 tablets of .25 mg six times daily).
I've been taking .15 mg of Permax for 1 or 2 weeks, having transitioned off of Requip before that. It's heaven not to have RLS at all at night. I had taken Requip for about 8 months (three tablets of .05 mg 1-2 hrs before bedtime). This followed about 5 years of Permax, which had been successful when I took it at the right time of day and didn't drink much caffeine. 

Last August, I saw a doctor in another state, who changed me to the Requip. I am not sure why he changed me from the Permax. He was too far away to continue seeing, so when the Requip stopped working as well, I found a local neurologist who specializes in sleep disorders. She told me that .15 mg of Permax is a 'teeny' amount and that she prescribes it for most of her patients.

After that, I read the Mayo clinic article and got concerned because I also have  mitral valve prolapse. Can this make me more at risk for the valve deterioration that the women in the article experienced? I intend to see someone about getting the test you do to check for heart damage. I go back to see the neurologist in a few weeks.
Do you have any comment on any of this?

Medical Reply

The jury is still out whether or not to worry about Permax and valvular problems, but it would be prudent to use Mirapex or Requip instead.  If tolerance develops to Requip (as in your case), then changing to another dopamine agonist is often helpful (as it seems to be with you).
It might be better to try Mirapex as a substitute for Requip in light of the concern over valvular problems.  Mitral valve prolapse has nothing to do with the above concerns with Permax.
Anyone on Permax for prolonged periods of time needs periodic echocardiograms to check for valvular problems.

Sent: Monday, April 14, 2003 9:09 PM
Subject: RLS better with Myoflex.
I have had restless leg syndrome now for approximately a year. When I first developed this condition, I thought it was standing on my feet in one position for so long  (at my job) that was causing the problem. In the last several months, I have had increased sensations of "drawing" and this horrible feeling of "pulling" which in turn would result in a leg spasm.

These leg spasms have caused my feet to draw up and jerk at the same moment. As others I know with this condition, my legs would start this in the early evening. Lately, I have noticed that this "drawing and pulling" sensation have become a part of my daytime routine. Its not only in the evening I'm experiencing them anymore.

The only relief I have gotten without prescription drugs is to take a very hot bath about 15 minutes before bedtime, then to rub Myoflex on my feet, ankles, and legs. Without this, I could never get to sleep. For some reason, the Myoflex seems to desensitize and somewhat quell the sensations. The active ingredient in this is Trolamine Salicylate. Why this seems to work for me, I don't quite understand.

But massaging the foot only gives me temporary relief, then as soon as I stop, the feelings come right back. This may or may not work for someone else who may be like me, reluctant to try prescription medicine that have low to medium risks.

Brenda W.

Medical Reply

The fact that your RLS is occurring in the daytime is likely indicating that it is more than mild and approaching a moderate range of severity.  If you are coping well with your current remedies, then there is no need for prescription medication.
If however, your RLS becomes worse and interferes with your life, then the risks of medication will likely be outweighed by the benefits.

Sent: Tuesday, April 15, 2003 12:17 PM
Subject: Clonazepam
I'm a 40 year old female who has had RLS for years. I've had RLS as long as I can remember. I approached a couple people when I was younger, but had a negative response. I was told to relax. My arms and legs and it seems even my whole trunk has been affected. I never mentioned it to anyone again for years. I got married and didn't say anything to my husband. I thought he would think I was crazy. I thought I was 'controlling' my thrashing since he never said anything to me.

Then computers came around and I accidentally came across the information on RLS anxiously showed my husband, who I was SURE would still think I was crazy. He was not surprised in the least that I had RLS!  And at last I knew I was not the only one who was so restless. I still was afraid to mention it to anyone who did not understand. I cautiously confessed to a few other people I had it only after they had mentioned it.  It gets so bad, I can REALLY sympathize with people who say they want to attack themselves. Last year, I mentioned it to my family physician, who prescribed Quinine, which did not help. I was so frustrated, I did not mention it again to my physician.

I recently was very sick and was hospitalized. The RLS really bothered me at this time and made my whole experience worse. I walked the halls with my husbands support and massaged my legs while talking to the physicians. We mentioned it to the physician, and he was very sympathetic. He told me he could give me a sedative and something for anxiety. I accepted. I'm not a depressed person by any means and I am psychologically sound. IT felt weird to accept help with this type of drug. I could try it and it would be great if it helped.

I've been taking Clonazepam for a couple weeks now and it really seems to be helping. I'm taking a half of .5mg tablet at nighttime. My family physician is still not knowledgeable on Rosebud I will pursue continuing with treatment. Your treatment page is great .The categories helps me understand the different drugs and how they are used for Resist Clonazepam safe to take every night? I'm to take it 'as needed'.

I never know when RLS will strike so I would not be able to prepare for it by taking clonazepam whenever. Is it likely in time I would have to increase the dose? I'm grateful for the help I'm getting. At this time I think this is the best treatment as no one should suffer with RLS.


Medical Reply

Although Klonopin (clonazepam) is in most of the textbooks as one of the drugs of choice for RLS, it is a drug that I personally do not like to prescribe.  It works great at first (at often for many years), but it is an addictive drug and tolerance to it occurs in a very high percentage of patients.  In addition, it has a very long half-life which causes the drug to be present the next day causing daytime fatigue or drowsiness (which may often not be obvious to the patient).
Mirapex or Requip are much better choices for RLS.  They can be taken every day at very small doses.  If you want an as needed sleeping pill, Ambien is a much better choice than Klonopin.

Sent: Tuesday, April 15, 2003 1:08 PM
Subject: Vicodin for RLS

Thank you so much for your informative site.  I take three  .125 mg of Mirapex each evening but it still does not relieve my restless legs. I am now taking 1 Vicodin at night and this relieves the RLS and allows me to sleep a few hours.   Will the Vicodin become an addictive drug taking this amount?  My doctor is really doesn't want me to take it all the time. Would more Mirapex be too much?


Medical Reply

The average RLS patient needs between 2-6 of the Mirapex per day.  Increasing the Mirapex slowly (by one tablet per week) until your RLS is under control is a very good idea.
If you need Vicodin daily (if the higher doses of Mirapex do not help or you cannot tolerate it), then alternating it with the non-narcotic pain killer, Ultram (tramadol), will prevent any chances of addiction/tolerance occurring.

Sent: Tuesday, April 15, 2003 11:27 PM
Subject: vitamins for RLS
About four months ago, I started having restless legs syndrome, and it was pretty serious. I  could not sleep and it was driving me crazy! I did some research, including reading  your website, and I decided to try vitamins, because some people said they'd had luck with vitamins.

I am now taking Calcium, Magnesium, and Iron, in high dosages. I have not had RLS for the past month! It is such a relief, and I can't think of anything else it could be besides the vitamins. I know how awful it is to try to sleep with RLS, so I am writing this in hopes that maybe other people will try and will have the same result with vitamins that I did.

Also, if I lift my legs about five inches off the ground while lying on my back or stomach, for anywhere from 15-30 seconds, 5-10 times, after I am lying in bed and the RLS starts--that seems to help calm it down, too. Sometimes I can feel it happening just a little, but if I do the leg lifts, it goes away. 

I am so happy to be able to sleep again!

Sent: Wednesday, April 16, 2003 4:35 PM
Subject: RLS Prescription Questions
I found your website recently and wanted to get your opinion on the symptoms I am experiencing with RLS.  Actually, my husband and I discovered I had RLS last year when every night I was kicking my leg in the bed over and over making us sleep in separate beds most nights.  I finally went to the doctor last September and was placed on Levodopa/Carbidopa - ER TAB 25.
The first prescription was for me to take one at night before going to bed.  Within a month or so, I discovered that I could not sit in front of the TV at night because of my legs having the sensation I had to get up and move and also, the one day of the week I was allowed a nap, I could no longer take one due to the legs acting up.  Upon calling the doctor, he increased my dosage to twice a day (once in morning and once at night).
Now my latest symptoms are all centralized in my feet.  Most nights, about an hour into sleep and then an hour before I wake, my feet begin the sensation that brings my out of a deep sleep.  The clincher was that last week I was on vacation and upon sitting down to watch a movie at night, I had to get up every night to move around because of the sensation in my feet.  I thought that less stress would bring a really symptom-free week!
I read through many letters on your website and discovered people with RLS are trying all kinds of drugs.  I am ready to contact my doctor again because I am now starting to experience sleep deprivation due to these recent symptoms.  I am so disappointed since I am already on a prescription that I had hoped would bring me back to normalcy.  Now I see that the prescription held for a month or so, and now the symptoms are beginning.
Sorry for the lengthy letter, and by the way I am not a lazy person ( as I am reading back on this letter).  I stay busy during the day with a 2 and 4 year old, so I really do not notice any symptoms in the day (except for the once a week nap).
I would be grateful for any advice you would offer on next steps to try as I contact my doctor.
Thank you,

Medical Reply

The problem that you started out with was not RLS but rather PLMD (the leg jerking problem).  Treatment with Sinemet (your generic Levodopa/Carbidopa - ER TAB 25) often brings on RLS (the unpleasant sensations in your legs when at rest).  Increasing the Sinemet helps for a while then worsens the RLS (augmentation and rebound).
You should wean off of Sinemet while starting and increasing either Mirapex or Requip.

Sent: Friday, April 18, 2003 2:32 PM
Subject: Newly diagnosed with old RLS

First, I would like to compliment you on this outstanding website and information source.  I don't think I've ever found this much helpful information on a medical condition anywhere, and it is especially helpful for such an under-researched, under-diagnosed, and misunderstood condition as RLS.

I am a 37 year old male in good health and in good shape, with the exception of poor sleep.  I was recently diagnosed with moderate sleep apnea, and prescribed CPAP therapy.  In the CPAP titration study, multiple PLM arousals were noted (there were none in the first). 

It was suggested that the PLM's might be secondary to the apnea (so they were not treated), but I soon figured out that they weren't going to go away because they were not in fact secondary to the apnea.  I have had symptoms of RLS since childhood, but I did not know that they could -- and in my case did -- intrude into sleeping moments as well.

Anyway, while my sleep did improve on the CPAP, I found that I would wake up at regular intervals -- the most regular was about 60-90 minutes after falling asleep.  Then about every 90 min - 2 hrs after that.  Usually after waking up I would just roll over barely remembering the event, but sometimes I would wake up completely and fall back asleep. 

Recently, I began to have trouble falling back asleep.  For several nights in a row, I would fall asleep for and hour or so, wake up, and then not fall asleep again until 4 or 5 in the morning (I get up between 7 and 8). So, I went back to my doctor to see what to do about the PLM'S.  Previously, he had suggested treating the PLM's w/ Mirapex. 

However, when I went in for the office visit, he suggested Neurontin 300mg before bedtime (he also gave me samples of Mirapex, in case the Neurontin did not work).  The reason he gave for the change is that, as a 37 year old, he did not want to mess with my dopamine system. 

After researching Neurontin, I was wondering whether he might have been engaging in "therapeutic deception," and prescribing the Neurontin for its sedative and anti-depressive effects, because I had been reporting remaining awake from 1-5am. 

My question is, is Neurontin a safer drug to use because of my age?  Is this an effective drug for treating mild cases of RLS?  Will it last through the evening? Another question.  I have read here and elsewhere that amitriptyline can aggravate RLS.  I take 10mg nightly for migraines.  Can a dosage this low have affect RLS?

Thanks in advance, and keep up the good work!
Terry S.

Medical Reply

Neurontin and Mirapex are equally safe drugs for RLS sufferers at any age.  More RLS/PLMD patients will respond to Mirapex, but some may do better with Neurontin.
Elavil (amitriptyline) usually makes RLS worse (even at low doses of 10 mg), but this can be quite variable with a small minority of RLS sufferers even improving with this drug.

Medical A Reply from Terry S.

Sent: Monday, April 21, 2003 12:42 PM
Subject: RE: Newly diagnosed with old RLS
Thank you for your quick reply.  I hope that you would not mind if I asked a couple more questions:
1)  Which of the two drugs (Mirapex and Neurontin) works best for controlling PLM's?  While I have RLS, it is mild and usually does not need to be treated.  But the PLM's are a problem.  I have a mild case of PLMD (maybe worse as I did not hit REM in my sleep study), but for me nearly all PLM's result in arousals (or complete awakenings).  While my neurologist recommended Neurontin, it's my call.  (After 4 nights on Neurontin, I have noticed an improvement, but I have had awakenings that I assume are PLM-related.) 
2)  How long does it take for Neurontin & Mirapex to start working -- i.e. how soon before bedtime should they be taken so they will be available when I go to bed, yet last through the evening?  Will both medications last through the night, or does one last longer than the other?
3)  I have begun to notice that sometimes immediately after exercise my legs are tingling -- like when they "fall asleep," except not as intense.  The feeling lasts a couple minutes.  At first I thought this was circulation-related (I first noticed it while cycling), but I've also noticed it a couple of times while doing "upright" exercises.  Is this an RLS-related phenomenon?

Terri S.

Medical Reply

1)  It is very difficult to answer if Neurontin or Mirapex is better for PLMD as there is so much individual variation.  My impression is that Mirapex may help more patients than does Neurontin.
2)  Both drugs should be taken about 30-120 minutes before bed (again large variations among patients).  Both drugs may last 4-8 hours depending on the dose taken.  This can only be determined by trial and error.
3)  It is possible that those symptoms are RLS related but unless they are associated with an urge to move your legs to relieve the symptoms, then it is less likely RLS related.

Sent: Friday, April 18, 2003 4:53 PM
Subject: RLS help without prescription medication.

I'm a 55 yr. old woman who has suffered intermittent restless leg syndrome since childhood. I'm reluctant to take pharmaceuticals so have been trying to get a grip  on this awful affliction through alternative methods.

Things that help: magnesium, calcium, hot milk, hot baths, psyllium whatever to keep the bowels moving well , even an occasional colonic irrigation or enema helps, NO caffeine, alcohol, as little sugar as possible, and lots of water and soothing herbal teas .

Panicking during seemingly unbearable seizures is the worst thing you can do . I do leg exercises such as side kicks while laying on my side, I get up and have a hot bath with some lavender essential oil, and BREATH , deeply.

Yoga does seem to help as well. Before a concert or plane trip, light food and psyllium the night before. Orgasm never hurts, that's for sure!  I know it's worse when I'm constipated at all or under stress.

I hope some of this info will help someone out there .

Sent: Tuesday, April 22, 2003 4:10 PM
Subject: Insomnia with Mirapex?

I have had RLS for about 4 years, and have been taking Mirapex, successfully for about the last three yrs, I have upped the dosage from one .125 pill to three, a few hours before bedtime.  Increasingly, I have developed insomnia, waking up after only 3 or 4, sometimes as little as 2 hours of sleep. I did read on a web site that insomnia could develop as a side effect of Mirapex, also frequent UTI's, which I have also recently had.    

I am desperate for sleep, as you can imagine, and resorted to some pain  pills, Percocet, two nights ago.  Three of the 5 mg. pills spaced out thru the night produced sleep, but the "hangover" the next day was intense.  Today my neurologist prescribed Klonopin, reducing the Mirapex little by little, and increasing the Klonopin up to 3 of the .5 mg tablets per night.  What is your advice? 

I am hesitant to take this drug, as there could be drowsiness the next day, liver damage?  Your suggestions would be really welcome.  I would like to get off all pharmacy drugs, and use natural, but have never had much success with them for RLS.  I also take 4 Ibuprofen twice a day for arthritis.  I am 65, active, in good shape. 

Thank you for any help you can give me. 
Gyana P.

Medical Reply

Mirapex can cause insomnia although strangely enough, sleepiness is a more common side effect.  Changing to Requip may or may not work better for you (only trial and error will let you know for sure).
Small doses of narcotics such as Percocet may be helpful, but 3 tablets in one night is a very large dose.
Klonopin is not one of my favorite drugs as it very often (over 80% of users) causes daytime sleepiness, often not well perceived by the patient.  It is also an addictive drug which may cause tolerance to occur with time (it works great for RLS when first used).

Sent: Friday, April 25, 2003 1:13 PM
Subject: Hormones and RLS

I have found your website very informative, thank you!  My question is could hormone replacement help relieve my RLS??  Three years ago I had an attack of ischemic colitis.  I was 51 at the time.  The doctors immediately took me off of the estrogen that I had been taking for 10 years following a complete hysterectomy.  Shortly thereafter I started experiencing severe RLS which I have tried treating in many ways. 

Currently I am taking Mirapex.  I am wondering if the sudden change in hormones could have brought on the RLS and if taking estrogen in patch form may help with the problem?  My doctors are considering putting me on an estrogen patch. 

I am desperate for help as the RLS has really reduced my quality of life.  Thank you for any insight you may have!!


Medical Reply

Hormones can certainly influence RLS, sometimes positively but other times negatively.  Many female RLS sufferers notice fluctuations in their RLS during their menstrual cycles and many have significant changes with menopause or hormone replacement after menopause.
It is certainly worth trying estrogen as you may get better, but whether you will improve, get worse or better is unpredictable.

Sent: Friday, April 25, 2003 1:30 PM
Subject: RLS?

I am so happy to have found this site.  For the past several years I have had problems with my legs at night.  It seems that around 9 pm (when I am either in bed or lounging on the sofa), I get a dull ache that sometimes feels like bugs crawling on the inside of my leg bones.  My only relief seems to be 1000 + mgs of Ibuprofen and sleeping on the floor for the relief that the pressure of a hard surface brings.  I think I have only slept through the night once in the past several years.  My husband complains that I twitch throughout the night when I am in bed (interrupting his sleep), so I usually start off in bed and the first time I wake up...I am on the floor the balance of the night.

More recently I find that about 7pm every night, my legs and sometimes my arms start to itch, much like I have hives.  I have tried changing soaps, detergents, everything, and the only thing that stops the itching is Benadryl, which does help me initially get to sleep.   I recently found out my Grandmother suffers with RLS and is taking some kind of depression medication.  I was wondering if RLS might be my problem too. 
About a year ago I went to my Dr. and explained the aching and itching.  I had extensive allergy testing and nothing showed up.  My doctor suggested taking Benadryl for the itching (said it would make me drowsy too) and if that didn't work she would prescribe something stronger.
I have been doing research via the internet on RLS and my symptoms seem very similar (although the itching seems less common).  Today I called called a research clinic that is doing a clinical trial (Healthquest) for RLS and have an appointment in a week to see one of their Drs give them more history, blood work and physical.  Is there any danger in possibly participating in a trial (assuming I am a candidate) or should I cancel the appointment, and try to get an appointment with a neurologist instead?
Cynthia H.
San Diego, CA

Medical Reply

It does sound as if you have RLS and you should get treatment as almost all patients can be successfully treated with proper medication.  There is nothing wrong with entering an RLS trial and in fact I have run 2 RLS studies already in my office.
The only problem is that most studies have 2 groups; the one that gets the real drug and the other that gets the placebo (sugar pills).  The studies are run such that both the doctors and the patients do not know who gets which pills (called a double blind study).  So, if you do not mind a 50% chance of ending up in the group that gets the placebo, then the study would be a good choice.
Unfortunately, most neurologists do not have much experience treating RLS.  I suggest that you find a neurologist (or better yet, a sleep specialist) who treats lots of RLS and are very comfortable and knowledgeable in this field.

Sent: Sunday, April 27, 2003 8:22 AM
Subject: Clonazepam and side effects tapering of the drug?

I was diagnosed with PLMD in '96. I have been on clonazepam since. Recently, I have been seeing a new Dr who is an expert in the field of RLS and PLMS. He said the he doubted I had PLMD and we agreed I should taper off the meds I am on.

I was on 2mg of clonazepam at bedtime and he said to reduce the dosage 1/4 mg per week until I was down to 1/2 mg. I did so and after being on 1/2mg for 2 weeks, he told me to go down to 1/4 for a week and then be completely off. I did that and until I stopped all together, I felt fine. As soon as I stopped completely, I have been feeling very shaky, dizzy, and nauseous.

How long can I expect these symptoms to last? I can't really function very well.

Thank You,

Medical Reply

It is likely that you are suffering from withdrawal from Klonopin (clonazepam) even though you tapered quite slowly.  The last dose of the drug is the most difficult one to taper of off.  It usually takes only a week or two, but some may need 3-4 weeks to feel normal. If it takes longer than that, then something else may be responsible for you symptoms.
The only way to make sure that you do not have significant PLMD affecting your sleep at this time would be a repeat sleep study.

Sent: Monday, April 28, 2003 7:36 AM
Subject: Mirapex problems?

I was diagnosed with PLMD/Restless Legs Syndrome 2 yrs ago.  I sleep approx. 3 hrs per night.  The only meds I've taken for it so far are various benzodiazepines.  My doctor had prescribed Mirapex last year and I took it for 3 days but started to twitch during the day - which I never do, only at night, so I stopped taking it. 

My question is; when you start taking Mirapex how long should it take before it begins to work if it is going to?  I am very desperate for sleep and am considering trying it again.

Ariel R.

Medical Reply

Mirapex will work immediately (within one to hours of taking it).  You may have started with too high a dose.  I always start with the lowest dose (.125 mg) which has the least chance of causing side effects.  If this dose does not help, then after each 3-5 days, you can increase it by one tablet.

A Reply from Ariel

Sent: Monday, May 05, 2003 10:34 AM
Subject: Mirapex

Thank you so much for your quick response to my last question and I now have another! I took .125 mg of Mirapex last night for my PLMD.  It did not help at all, it may have actually made my sleep even worse. It was almost as though even though I felt very tired,  I could not sleep. 

I usually have no problem falling asleep but wake up at least 40 times per night.  I could not fall asleep on the Mirapex.  Should I continue taking it and does it need more time to work or is one night enough?  I now don't know what to do.  I guess I will go back to the benzodiazepines, temazepam specifically.  I do not really like temazepam as I know they are addictive and cause severe daytime sleepiness. 

I don't know what to do.  Any suggestions??

Thank you very much.
Ariel R.

Medical Reply

Some people get insomnia with Mirapex (the more common side effect, strangely enough, is increased sleepiness which may limit its use in the daytime).  Sometimes, Requip may not cause this problem, so it is probably worth a try.
If not, then the shorter acting benzodiazepines are best as they should allow you to sleep but not cause daytime sleepiness.  Ambien is also a very good choice as it is not addictive and rarely causes daytime sleepiness.

Sent: Monday, April 28, 2003 6:53 AM
Subject: PLMD and Klonopin?

I was diagnosed with PLMD last week (saw a neurologist) and she prescribed clonazepam.  In reading your replies to the letters, should I be worried about taking this medication - I understand that it is addictive and that's just one more thing I don't really need at this point.  Should I ask my doctor to prescribe something like Zaleplon instead? 

I went to the sleep institute on Friday and although I don't have the official results, the tech said I have mild sleep apnea.  It isn't bad enough to have to use CPAP. Is there foods I should avoid for the sleep apnea (and the snoring).  I do not drink coffee after 10 am.


Medical Reply

I do not like using Klonopin (clonazepam) for almost any reason as it is an addictive medication and causes daytime sleepiness due to its very long half-life.  There are however, other RLS specialists who use this drug extensively, but I am clearly not one of them.  Sonata (zaleplon) or Ambien (zolpidem) are much better choices, although Sonata is very short acting (half-life of 1 hour) so it may not control your PLMD throughout the night.
The other concern is that benzodiazepine sedatives like Klonopin, may worsen sleep apnea turning mild sleep apnea into a moderate or worse problem.  They are therefore not recommended for sleep apnea patients.
Food and caffeine does not affect sleep apnea, but alcohol makes snoring and apnea worse.

Sent: Wednesday, April 17, 2002 11:51 PM
Subject: Best Antihistamine for RLS (?)

Thanks to your web-pages, so many of us are now aware that antihistamines worsen RLS. Are there some that work best in relation to not worsening RLS?  If so, can you give prescription types and over the counter types.

All of us fellow "NIGHTWALKERS" thank you in advance.
Martin A., NYC

Medical Reply

Almost all the antihistamines are trouble for RLS sufferers.  The 3 non-sedating antihistamines, Claritin (now non-prescription), Clarinex and Allegra, have a reasonable chance (in my experience, about 50/50) of being tolerated by RLS patients.

Sent: Sunday, May 04, 2003 6:30 PM
Subject: my restless leg & Ultram questions
I just happened on this website for the first time. I am a 53 year old female who suffers horribly from RLS. For the past 2 years I have been using Ultram.  For the past year I had increased to 4 pills a day to control it to the point I usually did not have any symptoms.

However in that last year, I have also experienced hair thinning to the point now where I fear if it continues  I will eventually have very little hair. My doctors have checked my scalp, checked my thyroid and have concluded either it is just naturally thinning or it may be the result of the Ultram. I am trying to take less Ultram, 3 a day currently, because I tried to go down to 1 or 2 just at bedtime and I was miserable and had very little sleep for about a week. I'm just not sure what to do.


Medical Reply

Hair loss is not even listed as one of the side effects of Ultram (tramadol), so it is quite likely that this drug has nothing to do with your problem (although, certainly less is a very miniscule possibility that it could be causing this side effect as one can never be 100% sure when it comes to drugs).
Ultram is a good RLS drug but it is much better to treat your RLS with Mirapex or Requip and only use Ultram if necessary.  Once you get up to 4 Ultram per day, there is a small possibility of addiction/tolerance occurring so it would be nice to be able to decrease this drug by using other ones that work differently.  If Requip or Mirapex do not work for you, then alternating Ultram and a narcotic (such as Vicodin) may be helpful.

Sent: Monday, May 05, 2003 10:25 AM
Subject: What about methadone for RLS?

I have tried many things for severe RLS; from relaxation techniques to health food and herbs, electro-stimulation, massage, from benzodiazepines to dopaminergic drugs as well as opiates (both legal and illegal). You name it, I've tried it. The only thing I have ever gotten relief from (and I mean ongoing with no rebound and no augmentation) is a low dose of methadone in the 25 to 35 mg range depending upon body size and tolerance.

What puzzles me is the reluctance of people to use methadone even when they are suffering horribly from sleep derivation! Stigma? Fear of addiction? With medical supervision and a little knowledge, methadone could and should help countless sleepless people. You do not have to stand in line at a clinic with addicts waiting to be dosed. Your doctor can give you a prescription to take to Walgreens. I fear to imagine where I would be without it.

Walter W., Milwaukee, WI

Medical Reply

You are right about methadone being one of the best drugs available for RLS, especially severe RLS.  Most physicians are very concerned about prescribing narcotics on a chronic basis, especially a potent one like methadone.  The other problem is that methadone requires a triplicate DEA prescription in most states which makes most doctors feel like big brother is watching what they do.
As I see many severe RLS patients, I prescribe methadone very often with excellent results and no problems with side effects, addiction or tolerance if used correctly.

Sent: Tuesday, May 06, 2003 10:04 AM
Subject: Mirapex
I took Sinemet 100/25 for the last month and was quite well rested.  I had no RLS while falling asleep but I was still jerking awake.  I felt relatively refreshed in the mornings and had a considerable, positive change in mood and motivation. 
I decided to try Mirapex so I started last night with .125 mg (half a tab).  It was terrible.  Couldn't fall asleep for about four hours and then when I did I had crazy dreams and lots of twitching.  My question is...should I stick it out and see if I adjust or go right for the Requip?  Does anyone get over the insomnia?
Also, in your opinion, if Requip doesn't work, would I be better off going back to Sinemet or moving on and trying something like Methadone?
Thanks again, this website has already helped me make a positive change in my life.

Medical Reply

Sinemet is not a problem if you stay less than 3 of the 25/100 mg tablets per day.  If you start to have trouble (augmentation or rebound) despite keeping the dose low, then a change would be in order.
Mirapex can cause insomnia, but it is hard to tell whether the low dose that you took caused the problem or getting off of Sinemet suddenly and not replacing it with a higher dose of Mirapex was the problem.  Requip would be worth trying if Mirapex does indeed cause insomnia.  Methadone is an alternative (more appropriate for severe RLS), but Neurontin is also worth considering.

Sent: Wednesday, May 07, 2003 9:14 AM
Subject: RLS Question about Gabitril for RLS

In reading the letters, I see that Mirapex and Sinemet (dopamine agonists) are the most frequently recommended medications. I recently saw a sleep disorder specialist who suggested I stop Permax and start Gabitril. What is  your experience with using Gabitril for RLS?

Thank you,
Jane L.

Medical Reply

I have tried Gabitril for a small group of my RLS patients with very limited success.  I still suggest that Mirapex or Requip are much better choices as we have a lot of experience with these drugs and they have both a very good track record and support in the medical literature for their benefits in RLS.

Sent: Thursday, May 08, 2003 3:17 AM
Subject: Pantyhose for RLS?

I stumbled across your site after reading an old copy of Prevention magazine with a story on Restless Leg Syndrome. I never knew what this was and never heard of it or PLMD before but I have all those symptoms for years. I never knew what it was that caused my problems.

I've had the restless legs, crawling skins, electric shock-y feeling and pain in my legs for over 25 years (I'm 41). When I was younger, my mom and her sisters called it "jumpy legs" or "jimmy legs." It was more annoying than anything else but as I've gotten older, the pain become more intense and the need to keep them moving became worse. The twitching or jumping in my legs was always written off as "muscle spasms" with no other investigation.

10 years ago I got married and the nightly leg moving and arm twitching was affecting my wife's sleep. 5 years ago, I decided to get help. I had a number of check-ups and tests and my flat feet were diagnosed and orthotics were made. After the break-in period, the pain in my legs did seriously diminish but not the jumping, twitching and crawling skin. Going back for further checks of the orthotics, my doctor mentioned that a lot of her patients with leg pain and discomfort wear support hose (pantyhose) and suggested I try them. I talked with my wife and she said it couldn't hurt. So I did. After getting over my awkwardness, I found they helped immensely.

On certain days when my legs are really bothering me, I'll even sleep in them and it has really helped, especially in reducing the jumpiness of my legs and that has really helped me stay asleep, and more importantly, my wife. Its been four years now and I wear hose almost every day.

I have another symptom that happens during the leg events; the backs of my arms, from elbow to the shoulder, burn or feel crawly too.

Has anyone else tried support hose/pantyhose? Has anyone else reported these arm symptoms? How do I approach my doctor and ask him to look into RLS and PLMD? Support pantyhose has helped but the pain is still there, along with some nights (and days) when even they won't help the crawling skin and burning sensations.

Thank you,

Medical Reply

Other RLS sufferers have noted that using stockings or wrappings which cause compression of the legs seem to help their RLS (usually only moldy, but some can get considerable relief).
For RLS that is more of problem such as yours, Requip or Mirapex would be the drugs of choice.  If your doctor does not feel comfortable prescribing these drugs, then ask for a referral to a sleep specialist (or a neurologist if a sleep specialist is not available) who can help you. 
There should be no problem approaching your doctor for help, just tell him your symptoms and diagnosis and if he does not help you as above, then you need a new doctor.

Sent: Wednesday, May 14, 2003 3:42 PM
Subject: Restless arms

HI there found your page and looking for some answers.  I am having troubles with my arms feeling restless with I try to go to sleep.  Its doesn't happen every time but when it does I feel terrible. Is restless arms as common as restless legs ? Sometimes I do get just a little of the restless legs.

I am on  Ultram for arthritis pain.  Could the restless arms be  from my arthritis ?  I am scared to mention this to my doctor as he will think me crazy.  I really need some help and not sure where to turn.  What type of doctor would be the best to talks to about this problem ?   

Thanks so much for any information,

Sheila, Knoxville, TN

Medical Reply

Restless arms usually occur with restless legs and most often indicate worsening of RLS.  There is a smaller group of RLS patients that have RLS mostly in their arms (as in your case) and this can occur in the milder stages of RLS.
There is no association between RLS and arthritis.  You should have no fear to discuss anything with your doctor (or you have the wrong doctor), let alone a legitimate condition like RLS which causes so much distress.  If your doctor will not take your condition seriously and treat it or refer you to someone who can, then you need to get another doctor.
Sleep specialists or neurologists are generally the best doctors to treat RLS but any doctor who is willing to spend a little time to learn about this disease can treat RLS.

Sent: Friday, May 16, 2003 7:18 PM
Subject: surgery and RLS

I'm considering going ahead with surgery to replace my hip.  I'm 65 and  have a severe case of RLS and am quite concerned about what this will be like.  My regular doctor is going out of the country for 3 months.  I've heard horror stories about RLS patients after surgery. 

How best can I prepare?  Do I need to wait until he returns so he can help me manage medicine?  I'm on OxyContin, .375 mg Mirapex, .5 mg. Alprazolam, 5 mg. Ambien and not sleeping through the night now.  

Medical Reply

There should be no problem in the immediate post-operative period as you will get lots of narcotic pain medication (which is standard for any patient).  The problem usually occurs 3-5 days after surgery when your orthopedist will want to reduce or eliminate your narcotic medication. 

RLS tends to get worse after major orthopedic surgery due to the immobility of the patient.  The increased RLS can be managed by taking Mirapex (perhaps at mildly increased doses) and adding narcotic medication as needed.  Your orthopedist has to educated as to your RLS needs and there is no reason that your post operative time should not be an RLS nightmare. 

If he is not willing or able to treat your RLS (even after your primary care doctor speaks to him about your RLS needs), then it may be prudent to wait until your primary care doctor returns from vacation (or find another orthopedist who will take care of your post operative RLS).

Sent: Saturday, May 17, 2003 8:39 AM
Subject: Progressing to intermediate now
I have had off and on RLS since childhood, then just a few times a year or so. About five years ago it became more frequent and I noticed it worsened when taking Tylenol PM (my old remedy).  All the over the counter stuff with a sleep aid so far seem to make it worse. I have tried many of my own little remedies with nice but brief success.
Melatonin worked for about a month. Increased Calcium for about three months. Magnetic insoles inside a pair of large socks for about 3 months, and still seems to lessen it to some degree. Hot bath immediately before bed works if I can get to sleep right away, but I also have insomnia and usually takes a while to go to sleep.
Anyway three weeks ago I noticed constant numbness in my right foot and loss of some motion in that foot. It is not painful but seems to tingle a lot and I have little small electric like tinges every now and then in that area (not the RLS type these are more like little shocks). Could this be related to the RLS or probably something entirely different.
I am seeing my doctor on this and a X-ray revealed low bone density in my ankle and lower leg area (previous compound fracture there 20 years ago). He has put me on high calcium, magnesium and a multi vitamin for it for now. I still have to have a bone density study done and a neurological test done on my leg. Just wondering if anyone else had similar experience with RLS or like I think its probably a unrelated matter.
Also I have noticed a strange thing with my RLS, I never seem to have it if I am away from home. Whenever I sleep in a strange bed I am OK. I spent a month in Europe in many different Hotels and not once in that month did I have RLS.  Also mine usually never starts until I turn the TV off and actually start to try and sleep. Been in bed a few hours watching TV no problem as soon as I turn it off it starts in about 5 minutes.
There must be something associated with different mind activities and moods that affect this syndrome. Just wondering if anyone else had similar experience.  I will see doctor next week and ask him about RLS, I have never mentioned it before as it was more intermittent.

Medical Reply

Osteoporosis (low bone density) or previous leg fractures and RLS have nothing to do with each other.  It is well known that mental activity (such as playing video games) can prevent RLS symptoms.  It may be more difficult to explain why your RLS was better in Europe, but changes in time zones, climate, etc., can sometimes affect RLS (for better or for worse).
The painful symptoms that you are having may be a neuropathy that occurs in a minority of RLS sufferers.  It may respond to Neurontin, Mirapex or need narcotic medication to get better. 
Stay away from drugs like Tylenol PM that contains antihistamines that worsen RLS.

A Reply from above letter

Sent: Sunday, May 18, 2003 11:56 AM
Subject: Thanks for response

I started back on Wellbutrin ten days ago. Two days ago I began a multivitamin  and a large dose of Calcium with Vitamin D at the urging of my Dr. to address the bone density issue.
Yesterday I noticed the RLS feeling in my left arm. It is the same type of strange sensation as my normal Leg RLS, but it is more constant and does not make me have the same actual feeling of having to move it. It does feel better if I move the arm. It is very annoying.

It occasionally seems to also involve my neck and jaw area but that is more sporadic and not patterned. The strange part to me is the fact that it doesn't come and go like my normal leg RLS (in waves every few seconds), it is also less intense.

Could this be something entirely different and have anything to do with the medication and vitamins?

Medical Reply

It is possible that Wellbutrin is bothering your RLS (although it seems to be one of the better antidepressant drugs for most RLS patients), but you would need to stop it for at least a week or two before you can be sure that going off it is the reason that you are getting better.  You would thus loose the antidepressant effect which most often takes a few weeks to become active. 
It is also unlikely that your RLS has much to do with vitamins.  Unless you are on other medications that worsen RLS (see our list), that is likely also not the problem.

Sent: Saturday, May 17, 2003 9:13 PM
Subject: Thanks for the advice. (see previous letter Friday, April 25, 2003 1:30 PM)

Thanks so much for your advice.  Two weeks ago (after hearing from you)  I made an appointment with a neurologist (sleep specialist) here in San Diego. Bad news was he was booked until August/September for new patients .  Good news was he had a last minute cancellation and I was able to see him today.

He said the symptoms were classic and the familial connection supported the diagnosis, he ordered blood tests for iron/ferritin, and started me on 15 mg of Restoril at bedtime and Tylenol #3 when the symptoms flare up (though suggested not taking them too close together). 

We will see what least I have hope now. He indicated that I should take the Restoril every night (since I never sleep through the night) and then in 2 months he will see me again (unless I have a problem earlier).  Are there any issues with taking it every night?  I had read somewhere that it shouldn't be taken for more than 2 weeks at a time?

Thanks again,

Cynthia H.,
San Diego

Medical Reply

There is some controversy about taking benzodiazepines (Restoril/temazepam is in this class) on a daily basis for more than a few weeks as they can be addictive in some individuals.  Many patients can take them daily for years without any tolerance or addiction but others do get into trouble.  If a daily sedative/hypnotic is need for sleep, I suggest Ambien, as it is not addictive and tolerance rarely occurs.
In addition, I find that Mirapex or Requip take care of the evening RLS problem very well and then bedtime sleeping pills are needed only occasionally if at all.  This is my preferred way to treat RLS that needs daily medication.

Sent: Saturday, May 17, 2003 10:43 PM
Subject: Any new research?

I have a question for my favorite expert on RLS/PLMD.  Have they found any correlation between RLS and the cerebellum?  It's been over 6 months since I had a meningioma removed from the lower right region of my cerebellum.  It was against the sinus but was totally excised. 

I am a life-long sufferer but my symptoms increased dramatically in the time frame that the tumor was believed to have been growing.  Words cannot describe how bad the RLS was!  Now I am still taking a small amount of Ultram since it hasn't totally gone away, in fact, my RLS is more like it was when I was in my 30s; much more manageable.  The only difference in my life was the removal of the tumor. 

I'm pretty sure you'll email me back and say there's no evidence the cerebellum is involved, but I can't ignore what has happened to me.  Maybe my experience could help researchers in a new direction.  

Medical Reply

There is some evidence that the cerebellum may be involved in generating RLS symptoms but there is also a lot of conflicting evidence that other areas of the nervous system are more important.  It is still quite difficult to figure out.

Sent: Sunday, May 18, 2003 7:13 AM
Subject: RLS constantly in feet
The most discomfort I feel is in my feet They are extremely sensitive, but particularly to being confined in shoes.  I can feel seams in my socks or stockings and am constantly taking off my shoes to stretch my feet and massage the pain. 

The balls of my feet suffer the most.  They burn and feel swollen. It is very difficult to drive any distance. I start to have numbness, so I do this without shoes on to keep better control.  My feet are never totally relieved with Sinemet 25/250 X6 tablets a day. 

I also have difficulty with my eyes .Many times I feel my vision is blurred when the meds start wearing off.  They become very itchy.  Recently I did a survey for an RLS study at Hopkins.. I was invited to partake in a six day study which included an MRI and sleep study.  I really felt this might give me some answers. 

However, to participate I must be drug free for the 5 days preceding the tests  plus the six days of the test. I really don't think I could tolerate this cold turkey approach.  I would probably end up on the Psych ward.

So do you have any solutions to my problems?  I'm very frustrated...HELP! 

Mary Ann 58/Teacher/Frederick MD

Medical Reply

The major problem that I see with your RLS treatment is that you are taking a high dose of Sinemet which causes RLS to worsen.  Discuss with your doctor about stopping Sinemet and replacing it with Mirapex or Requip. That might solve a good part of your problem.
The pain that you have in your feet sound like the neuropathy that some RLS patients experience. Neurontin or pain medication often helps this (if not made better by the change to Mirapex or Requip).
Research is very important to help us find out about RLS but it is extremely unlikely that entering the six day RLS study will shed any light on your RLS problem.  If you feel that you cannot tolerate the drug washout period then you are clearly not a candidate for this study.

Sent: Monday, May 19, 2003 5:35 PM
Subject: Sick of Drugs....

I am 39, And have narcolepsy, continual RLS, and kidney problems. I take pills to wake up, pills to Help my legs, Pills to help me sleep, and pills so I wont get depressed from taking all these pills. From what I have read on all these subjects, they seem to be related in some form. Most people have some kind of sleep or kidney problems also, the kidney problems are probably from the pills, but the sleep disorders do seem to be related to the RLS.

I have had all kinds of blood work, EEG, brain scans, EKG. Every thing comes back great ,"Which is wonderful" Except of course that if someone could find the cause, then there would be a greater chance of finding a cure. I think the guy that said vascular is on to something so that is my next avenue. I read in an old medical book that is has to do with the blood pooling up in your legs. I don't know!

I can tell you that Lortab has been the best I have tried yet, and I have tried a lot. With drugs like Xanax, I slept but the flipping and flopping still went on all night, same thing with drugs like Permax and Klonopin which are all a different class of drugs. By the way it started in my legs but 4 years ago I started feeling it all over. Got to go.

Thanks for sharing your stores it helps to know I am not alone.

Medical Reply

Sounds like you are having a tough time of it.  Your problems are not really related other than they all make your life worse.  I still favor Mirapex or Requip which really helps RLS and you can still add smaller doses of Lortab if necessary. 
We are still far from finding out the cause of RLS, let alone a cure.
Sent: Wednesday, May 21, 2003 10:44 AM
Subject: HELP

I have developed what I believe is RLS.  My lower legs feel trembly and weak almost all the time.  I cannot sleep at night because my legs hurt and jerk and move on their own.  I was in a car accident 2 months, had broken ribs, torn spleen and torn diaphragm.  I was given Darvocet N-100 for pain. 

Although the rib pain is no longer a problem, I've noticed that when I take 2 Darvocet tablets at night, I have less symptoms with my legs.  I was also prescribed Ambien for sleep which does not seem to help with my legs.  It just makes me very sleepy but I cannot sleep because of my legs.  MISERY. 

I'm on PremPro and Dyazide.  Is the Ambien, Prempro or Dyazide causing the problems with my legs?  I have severely cut back on caffeine with no results.  I've tried warm baths.  I've tried to relax.  Nothing is helping me.

Medical Reply

It does sound as if you have RLS.  Nothing you are taking should be affecting your RLS, so I would not worry about your current pills.
Narcotic pain pills (of which Darvocet is one of the weakest) are very effective for treating RLS symptoms.  A better choice for treatment is Mirapex or Requip which should give you excellent relief.

Sent: Wednesday, May 21, 2003 1:36 PM
Subject: Restless Legs in Alabama

My name is Sallie and I live in central Alabama.  I've been suffering from RLS since about 1995.  However, it took about a year before I was properly diagnosed.  My family doctor put me on Skelaxin and referred me to a neurologist who found nothing wrong with me.  As far as I know, I do not have the jerky legs--at least no one has told me that.  I have the just deep pain in my calves. 

Before I was diagnosed, I would get up in the middle of the night and rub my legs down with whatever kind of muscle rub I could find and wrap ace bandages around my calves. Then one day I had to see my regular doctor's partner because he was on vacation.  She immediately diagnosed me with RLS and put me on Klonopin.  It was a miracle for me for years.  As a matter of fact, about a year ago I was able to start taking it on an as needed basis. 

Then all of a sudden, the RLS returned with a vengeance.  Instead of one .5 mg, I was having to take two.  And sometimes I would have to add three ibuprofen to the regimen. I do know of some things that will "set off" (that's what I call it) my RLS.  I cannot take any kind of anti nausea medication (Phenergan in particular); most antidepressants (although Celexa and Lexapro don't seem to bother it); any over the counter antihistamines. 

Antihistamine can set off RLS in a major way.  I work for a pharmacy company that services nursing homes and a pharmacist helped me determine what all of these medications had in common that was causing my legs to hurt so bad I wanted to chop them off.  I'm sure many of you have felt the same way.

Anyway, it was apparent that the Klonopin was no longer working.  I was recently changed to Neurontin.  It's only been two nights, but I have been better.  The pharmacists I work with had suggested this over most of the other medications used to treat RLS because it has minimal side effects.  I have been a little dizzy when I wake up in the morning, but at least I'm not groggy all day.

I would like to know if there's any kind of foods, drinks (e.g. caffeine), I should add to or delete from my diet that may help me with RLS.


Medical Reply

Antihistamines are one of the most potent drugs for worsening RLS. Caffeine is the most common food substance to avoid.  For other drugs and foods to avoid, please see our RLS Treatment Page.
Skelaxin has no role for treating RLS.  Klonopin helps most RLS initially, but tolerance and addiction occur very often. Neurontin is a reasonable drug if you do not experience side effects (usually sleepiness during the daytime).  If the Neurontin does not help adequately, then consider Mirapex or Requip, which help most RLS sufferers.


The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.


Click to go to the RLS HomepageRLS Treatment Page