Patient letters on RLS symptoms and remedies- Page 24

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Sent: Friday, November 05, 1999 12:04 AM
Subject: Chlordiazepoxide/Bromazepam, Clonazepam, Ropinirole (Requip) and PLMD (see previous letter, page 23, Oct. 15, 1999)

You asked why my doctor advised me in the past to take a first dose of Requip at 6.00 p.m. That was to seize upon the twinkling in my calves I experienced in the late afternoon, evening.

On your advice by mail of October 15, I started to take the total dose of 1 mg Ropinirole at bedtime. The twinkling feeling has disappeared almost completely, so I had the best stable situation in two years. Nevertheless at October 29, on your advice and after consulting my doctor, I switched from Clonazepam (1.0 mg. every second day) to Xanax (0.5 mg each day to take for 12 days and afterwards a drug-holiday of two days). The first night I had no problems at all. Then 6 nights it took about 1 to 2 hours to get asleep. As you know I used to get asleep very quickly after 0.5 hour. On the average I  awake 4-5 times each night, while sleep is very light.

This experience remembered me of withdrawal symptoms in the past. In the daytime I am very tired and the twinkling in the calves in the late afternoon and evening came back. Is it correct that a switch from a benzodiazepine with a long half-life to a benzodiazepine with a short half-life is the cause of withdrawal symptoms? If so, how long will it take for a better sleep? If not, what is bothering me and what can I do about it? As you will understand the desire to switch back to Clonazepam is very high for the moment.

Thanks very much in advance for an answer.

Toon t.H. E.

Medical Reply

Generally, substituting Xanax (a short acting sedative) for clonazepam (a long acting one) should not be a problem. However, every person is different, and you may not do as well with Xanax. You have 2 choices. You can stay on the clonazepam 1 mg every other night, and if you have done well on this for a long time already without much trouble, then hopefully you will do well in the future.

If you do really want to get off of clonazepam (due to the sleepiness on the second day when not taking it), then maybe taper off it very slowly (by .25 mg every week or so) and try other sedatives such as Halcion, Ativan or even Ambien to help you get to sleep instead.

A reply form Toon E.

Sent: Friday, November 05, 1999 1:43 AM
Subject: Re: chlordiazepoxide etc.

Thank you very much for the quick answer. As I wrote once I had a bad experience with Ambien: I got very angry sometimes. So I will never take that drug again. Halcion has a very bad reputation in Holland, in the sense that people reacted violently in public. A few years ago it was in the papers. So I hesitate to go that way. Before switching back to clonazepam, I will explore Ativan.

Thanks again,
Toon t.H. E.

There have been different types of problems with Halcion, although quite a few people still do well with this drug. If the Requip has taken care of your RLS problems, then you should actually not need any sleeping at all. You may slowly try to wean off of clonazepam or Ativan (if you use that to replace clonazepam) completely.

Sent: Friday, November 05, 1999 12:18 PM
Subject: RLS problems

I'm not sure if what I am experiencing qualifies as RLS. I am able to go to sleep okay, but I am awakened after a few hours by a burning, rushing uncomfortable sensation in my right leg and going up my whole body to the right side of my head. Also feel some nausea. It dissipates after about ten minutes, but I am left with a residual discomfort in my right leg. I had similar problems in 1996 and used Voltaren to help the pain.

Now it has returned! What is this strange feeling I get? Does it seem to fit the pattern of RLS or what? My doctor usually looks bewildered when I describe the symptoms.

Thanks,
Flo S., age 66

Medical Reply

Whatever you have it is somewhat strange. RLS usually occurs at rest and especially when you go to bed. It is also associated with an almost uncontrollable urge to move the affected limb. It can occur also when you wake up at night, but it would be very unusual (but not impossible) for you to have the problem only when you wake up at night.

It might be worth a trial of low dose Mirapex, and if that works well, then you have your diagnosis and treatment. If Mirapex does not help your problem it does not mean for sure that you do not have RLS.

Sent: Saturday, November 06, 1999 10:09 PM
Subject: Severe RLS

Sent: Monday, November 08, 1999 6:23 AM
Subject: NSAID's or muscle relaxants for RLS? (see previous letter, 5/7/99)

I hope that you will once again be able to give me some help. A short background before I begin: I am currently on Mirapex (0.125 mg at 8am and 3pm and 10pm): Ultram (16.66mg taken at 8am, 3pm and 10pm); and Xanax (1mg per day taken at bedtime).

I have been on this program for the past eight months and am doing quite well. I take a drug holiday from Ultram every 3 weeks and although I manage, the two days are very difficult and I experience quite a lot of pain as well as the withdrawal symptoms form Ultram that I may have described to you before.

I recently heard about a new drug called Vioxx . It is a Cox 2 inhibitor made by Merck that I understand is quite a good for pain management. As my RLS symptoms are mainly pain in my legs when I am on the Ultram drug holiday, I was thinking that it may be worthwhile to try to get off the Ultram completely by using Vioxx in its place. I would think that I would have to gradually get off the Ultram over perhaps a week or so, by gradually cutting down the dosage while at the same time using Vioxx in its place. I am not sure of the dose of Vioxx that I might require but a friend who suffers from back pain takes 25 mg once each day. Please let me have your thoughts on this. Of course I will be checking with my doctor before I make any changes.

One other matter that you may be able to help me with, is the suggestion that I use chlorzoxazone 500 mg three times a day instead of Ultram during my drug holiday. Have you any thoughts on this

As always, I look forward to your counsel.

Best regards,
Leon K.

Medical Reply

My first question is why you are not taking a narcotic (such as Vicodin, codeine, etc.) for your drug holidays from Ultram? This is what many RLS sufferers do when they cannot tolerate the drug holidays from this drug (although it is theoretically better to be on no pain killer, it seems like it does not make a difference in this case).

Another thought would be to increase your dose of Mirapex by .125 for each dose that you take, and see if this helps to get you through the drug holiday. In fact, with enough Mirapex, you might not even need Ultram on a regular basis.

The information that you have about Vioxx and Parafon Forte (chlorzoxazone) is not applicable to RLS. Vioxx is a new anti-inflammatory drug which spares the stomach (COX 1 receptors) by only inhibiting the COX 2 receptors which are responsible for arthritic pain. The older NSAID's (Non-Steroidal Anti-Inflammatory Drugs, such as Naprosyn, Motrin, etc.) inhibit both COX 1 and 2 receptors and therefore lead to stomach problems while helping arthritic pain. The NSAID's do not seem to have any benefit (for the vast majority of RLS sufferers) for RLS pain/discomfort.

Parafon Forte (chlorzoxazone) is a muscle relaxant. I have heard of a few scattered cases where it has given some marginal benefit for RLS, but as mentioned above, this is not a medication that is useful in the majority of RLS sufferers. In addition, this drug tends to make people quite sleepy (quite good if you have severe back muscle pain/spasm).

Sent: Tuesday, November 09, 1999 5:46 AM
Subject: Re: Vioxx instead of Ultram for RLS?

The reason I have not been taking a narcotic during my drug holiday has been my presumption that Ultram, while not classed as a narcotic, has similar attributes. I therefore drew the conclusion that to use a narcotic during a drug holiday would negate the benefits of the drug holiday. From your e-mail it seems that this presumption was incorrect and that I should in fact try either Vicodin or codeine.

Frankly, I find that Ultram appears to be somewhat addictive and the reason I have been looking at Vioxx is that I would like to stop taking Ultram if I can find a substitute. Do you at least think Vioxx is worth a try?

Leon K.

Medical Reply

Ultram works on different receptors than the narcotics, which is why it seems to work as a substitute for the narcotics on drug holidays. Although Ultram has a very small addictive potential, it certainly can become addictive (although it is much less likely, but not impossible at even the low doses that you are taking).

Anything is worth a try, but the chances of Vioxx helping you are extremely slim.

Let me know how it works, and remember that you can even increase your Mirapex and see if you even need a pain killer at all.

Sent: Wednesday, November 10, 1999 4:45
PM Subject: Drug holiday if alternating Darvocet and Restoril?

Thank you so much for your site, it has helped me so much. I have RLS and PLMD. I am writing to ask you a few questions. I am taking Neurontin 1200 mg at night, and 300 mg twice a day as needed, and then a alternate nights between Darvocet 100 and Restoril 15mg. I was wondering if it is necessary to take drug vacations with the Restoril and Darvocet, and if so how long and how often.

Also what about the Neuron?  Recently I have been having problems with the RLS at night so my doctor prescribed Mirapex. How long does it take to work?

Thank you very much for your help,
R.R.

Medical Reply

If you are taking Darvocet and Restoril on alternate nights, then there is no need for a drug holiday. Restoril generally takes about 46-60 minutes to become effective and may cause some morning sleepiness. If these are problems that are occurring with you, then you might want to have your doctor change you to Ambien or Xanax.

Mirapex works immediately. If the .125 mg does not help you, then it should be increased every 5 days or so by another 1/2 or one tablet until it does help you. Most RLS patients find that it works better than Neurontin, and that they can decrease or even eliminate Neurontin when they have reached the correct dose.

Sent: Thursday, November 11, 1999 2:26 PM
Subject: Drug holiday on Mirapex?

I've had severe RLS/PLMD since college. I am now 36, and have found your treatment page very helpful. I have been on Codeine, Ultram, Ambien, Klonopin, and Xanax in various combinations for several years. My neurologist started me on Mirapex last May. I thought it was a godsend! I am currently taking .125mg at 2:00, and 6:00 p.m., and .25mg at bedtime.

In the past month, however, I am noticing worsening symptoms, and more daytime occurrences. I am reluctant to increase my dosage by much, as I am trying to conceive, and am aware there are no studies on the effect of Mirapex on a fetus. Believe me, if I didn't need to take medications for this condition, I wouldn't!

My question is: should I be taking a drug holiday from Mirapex, and if so, can you recommend a medication that I can take that will be safe during the day? I drive quite a bit and feel uncomfortable taking narcotics, or sedatives in the daytime.

Thank you so much for your invaluable service!
Laura P.

Medical Reply

It is possible that you are getting tolerant of Mirapex. Permax works much the same as Mirapex (a few more possible side effects) and there is no cross tolerance to Mirapex. I have several patients who alternate (every several months) between Mirapex and Permax. Generally speaking, Permax .05 mg = Mirapex .125 mg.

The only drugs that are approved for pregnancy are the benzodiazepines. Mirapex, Permax and the Parkinson's disease drugs are not supposed to be taken during pregnancy. Unfortunately, pregnancy usually causes significant worsening of RLS.

Sent: Thursday, November 11, 1999 7:21 PM
Subject: Mirapex relieves all symptoms of RLS

My husband has had a bad case of RLS for many years. I read an article in Health magazine about using very low doses of Mirapex for RLS. His doctor prescribed .125mg tablets. Two of these tablets relieve all of his symptoms with no side effects. I'm so happy they work because now I can sleep!

I read several of the messages and noticed there had been some success with Mirapex. It's kind of scary to see all the drugs people are taking for RLS. The only thing my husband has used for the last two years is valerian root capsules. Helped him relax enough to get to sleep fairly quickly and then he slept fine. There was still a lot of movement that kept me awake!

Sounds like for some of these folks the drugs and their side effects have created a whole new set of problems that are probably unrelated to the RLS. My husband's doctor said he had many patients who would be interested in Mirapex. Apparently a common problem, but he had never heard of this as a treatment.

How long has Mirapex been prescribed for RLS? Is it an off-label use and can't be marketed to the doc's as a treatment for RLS?

Laura

Medical Reply

Mirapex has been used for RLS shortly after it was available (by doctors on the cutting edge of RLS treatment) for Parkinson's disease (about 1 1/2 - 2 years ago). It does not have approval for treating RLS and is thus definitely off label for this condition and as you have stated, it can not be marketed for RLS.

Doctors do have latitude to prescribe medication if there is a rational reason for doing so. There have now been several studies confirming its use and safety for RLS.

Sent: Friday, November 12, 1999 3:21 AM
Subject: Ultram and Soma for RLS

I have been having problems with RLS for years. It started with just my legs twitching and jerking at night and now it has moved to my arms.I am taking Ultram and soma both for RLS and back problems. I take Ultram 50mg 4 times a day and soma 350 3 times a day.

My doctor is putting me on Sinemet CR 50/200 one tablet before bed. Is this combination good for me, or will I have problems with it ? I wake up in the mornings feeling like I have been beat with a stick. Some times can't get to sleep untill 4 or 5 am. any help will be appreciated

Thanks,
Steve S.

Medical Reply

Ultram is a good agent for RLS and back pain. However, if you take it regularly four times a day for months, there is a possibility of getting tolerant to the drug for both RLS and for back pain. Soma may help back muscle spasm for the short term, but it has not been shown to be effective for chronic back pain problems (despite the fact that it is widely used and prescribed for chronic back pain). It can make you sleepy during the daytime.

Sinemet does not seem to be helping you and it is no longer recommended for treating RLS. Mirapex or Requip are now the treatments of choice in the Parkinson's disease class of drugs. Get on one of these and you should do a lot better.

Sent: Saturday, November 13, 1999 10:48 PM
Subject: Vioxx for RLS (see previous letter above, November 8, 1999)

Thanks again for the message. I think I will give Vioxx a try. I had been of a dose of Mirapex of .75 mg per day compared with my current dose of .375 per day and I still had a bad time during my drug holiday from Ultram. I'll give Vioxx a try and let you know the results.

Many thanks.
Leon K.

Medical Reply

Go ahead and try Vioxx and let us know how it works for you. As I stated before, it is very unlikely that it will help you. If it does not help you, then consider Vicodin or Tylenol with codeine in the future for your Ultram drug holiday.

Sent: Sunday, November 14, 1999 10:16 AM
Subject: Restoril and Darvocet for RLS? (see previous letter above, November 10, 1999)

Thank you for replying so quickly before, it is really really appreciated. I have a question. 4 nights ago I added Mirapex to what I take. I take Neurontin and alternate nights between Darvocet and Restoril. I noticed that I slept well on the nights I took Restoril, but not well at all one the nights I took Darvocet.

I am going to contact my doctor and tell him this, but I want to ask him to prescribe something else instead of Darvocet.  What do you recommend? And how should I take something else? Still alternating nights or some other way?

Thank you so much for your help.
R. R.

Medical Reply

The real goal is to get your Mirapex dose at the right level which should permit you to use Restoril or Darvocet on an as needed basis. If this is not the case and you want to know how to avoid getting tolerant of your sedative, Restoril, then you have to substitute a different type of sedative.

Right now there are 2 non-benzodiazepine sedatives, Ambien and Sonata. It is possible that substituting one of these for a benzodiazepine (Restoril, Halcion, Valium, etc.) may work on different enough receptors that tolerance to the benzodiazepine will be avoided. Practically, this has seemed to work well, but there are no studies to verify this theory.

You could alternate Restoril and Ambien on a daily basis or take Restoril on weekdays and Ambien on weekends. We always recommend taking at least a 2 day drug holiday from any sedative drug every 2 weeks to help assure that tolerance does not develop.

The narcotics (Darvocet) may only help you get to sleep by decreasing your RLS symptoms, but may not help you sleep well. You are likely to do better with the above treatment.

Sent: Sunday, November 14, 1999 11:31 PM
Subject: Do I have RLS?

Amazing. I have been experiencing the symptoms of RLS for several years and chalked them up to being tired muscles. For years I have experienced these restless sensations in my calves (especially when I am the passenger on long car rides). The only solution has been to literally punch my legs until I can move around.

For the past several years I have also experienced sleep disturbances (waking up again and again and again during the night and assuming it was apnea since I had no idea what was causing it). Does it seem likely that the two are related? Lately I have experienced a kind of remission, no daytime symptoms. But I still wake up throughout the night. I never even thought to alert a doctor to these symptoms even when it got bad, For a time I had these same symptoms in my arms and shoulders. I don't know if I really have RLS or of it's something else?

I would greatly appreciate any advice or information.
E. Wells

Medical Reply

Your symptoms do sound like RLS. If, when you are at rest, you feel you must move your legs, and at the same time there is an associated discomfort, then there is a very strong possibility that RLS is the right diagnosis.

The arousals at nighttime could be from PLMD, but you would need a sleep study to prove it. Discuss the situation with your doctor.

Sent: Monday, November 15, 1999 11:40 AM
Subject: Percocet or Ultram for RLS Treatment

I am 37 years old and have had RLS for about eight years. My mom has it too although not as severe as me. I have been seeing a sleep specialist who has tried all sorts of treatments on me, some helping and others making it worse. For the past year I have been taking two Percocet at night and that completely relieves the symptoms. The only problem with that is I am constantly tired and at times can't hardly drag myself out of bed. I am worried about the possibility of becoming addicted so I keep trying other treatments.

My mom had a prescription for Ultram and I asked her if I could try a few. They have really helped a lot and I'm about to replace the Percocet with them. My pharmacist tells me that they work on the same part of the brain as Percocet but they are not a narcotic and not addicting. I also bought a hot tub and that helps a lot too, I have to get in it just before I go to bed though. Ultram seems to be a good non narcotic alternative for me!

Duane B.

Medical Reply

If Ultram helps you, it is better to use it in place of Percodan. You should still take regular drug holidays (2 days off every 2 weeks) even from the Ultram to assure no addiction or tolerance (possible even with Ultram, but much less so). Percodan (or a less potent narcotic such as Tylenol # 3 or Vicodin) can be used for your Ultram drug holidays if you become desperate.

Your daytime fatigue could be from PLMD causing arousals during your sleep. The narcotics or Ultram do not help this problem. Discuss trying Mirapex with your doctor, as it can eliminate the need for Ultram or narcotics and also take care of the PLMD problem if it is present.

Sent: Monday, November 15, 1999 8:51 PM
Subject: Sleep Study

I'm excited to be having a sleep study started the first of January by a wonderful sleep specialist in my area. I just finished filling out a questionnaire (very long) for them and I have a question for you.

Why do they ask these questions: Age when you walked, difficult birth, infections such as meningitis, scarlet fever, and mononucleosis. There were other questions but I was able to answer yes to these. Do you know of any correlation in your studies between these things and a rip-roaring case of RLS?

Also, they want me to do a two week sleep study of my sleep before I come in. Of course, I will have to not take my 5mg of Oxycodone on those nights to make the study valid. How will I do this? I will not be able to calm my RLS down enough to ever get to sleep on those nights. Do I just tough it out? I'm sure they will do a sleep (overnight) study at the clinic also.

Anyway, I'm a little nervous about all this, but I'll do what I have to do.

Thanks for your answer,
Pat

Medical Reply

The sleep questionnaire is not specific to RLS but general for all sleep disorders. Just because you have RLS, does not mean that you cannot have sleep apnea or any of the many other sleep problems in addition. The survey helps point out other areas of potential concern.

It is best to be off RLS medication before a sleep study to get a "pure" study. This however is not always possible, so we only expect the best the patient can do. Just do your best and do not worry.

A sleep study is not necessary for RLS, but is very helpful to diagnose arousals from PLMS.

Sent: Wednesday, November 17, 1999 8:10 AM
Subject: Wellbutrin and RLS

I began Wellbutrin with 100 mg for several weeks; frankly I just felt a little calmer, but nothing else. Then, about 12 days ago I went up to 150 mg, and for the last 5 days or so my sleep has gotten much worse--increasingly more frequent breakthroughs of my RLS.

My question is, can I go back down to 100 mg to see if I sleep any better? This move would tell me if it's the Wellbutrin or something else. (I doubt seriously if it's the Mirapex. I take 4 .125 mg tablets 1 hr before bedtime and maybe 2 more at 3 or 4 am. if I'm wide awake, as lately I have been. Is this scheme ok?)

Thanks as always,
Anne G.

Medical Reply

The Wellbutrin could easily be the cause of your worsening RLS, but as there are lots of other possible causes, it can be difficult to decide. The best way is to decrease (or better discontinue completely) the Wellbutrin and see if you get better, then worse again with restarting it. Please do not do this without the supervision of your own doctor.

Remeron is another choice if Wellbutrin turns out to be the culprit that is worsening your RLS.

Sent: Wednesday, November 17, 1999 3:43 PM
Subject: PLMS

After a year or more of awakening about every half hour every night, I have been diagnosed with PLMS (by sleep study). I also have RLS, but only mildly. The RLS during waking hours doesn't really bother me. My sleep is usually better about four hours after I have gone to bed and I can sometimes get a few hours of undisturbed sleep then, but I still move around quite a bit during sleep (not just twitches - one roommate said it looks to her as though I am repeatedly trying to get out of bed even though I am asleep). My bed sheets are usually off the bed in the morning and one night I even knocked over the bedside lamp in my sleep. During my frequent awakenings I often feel a compulsion to eat and I have gained a lot of weight.

I take Celexa for chronic relapsing depression. I have been tried on Permax and Neurontin. The Permax didn't work. The Neurontin worked for about two weeks. Now I have been switched to Sinemet and Klonopin which I see are your two least favorite medications. I slept five hours last night which is excellent for me, but I feel very tired today. I am getting very frustrated.

Any suggestions?
Nancy E. M.

Medical Reply

Sinemet and Klonopin are chosen by doctors who know more than the average doctor about RLS, but are not as up to date as the RLS experts. Sinemet can cause horrible problems of augmentation and rebound (you definitely do not want to experience these problems) and should not be used any longer for RLS (except in rare cases by experts who really understand the drug in RLS).

Klonopin is a too long acting benzodiazepine that tends to cause daytime sleepiness and other problems. My choice is Ambien or Xanax. Start at the lowest dose and increase only if necessary. These drugs generally do not eliminate the PLMS, but only decrease the arousals from the PLMS.

Mirapex and Requip are the best drugs for PLMS. They usually decrease the actual PLMS. The drug should be started at low doses, then gradually increased until the problem is resolved. With adequate Mirapex/Requip, you should not even need a sedative such as Klonopin, Ambien or Xanax for sleep.

Sent: Thursday, November 18, 1999 6:08 AM
Subject: Drug holiday on Mirapex? (see previous letter above, November 11, 1999)

Thank you for your speedy reply. One more quick question: how long should I stay off the Mirapex during a holiday, and how often should I take a holiday?

Thanks once again.
Laura P.

Medical Reply

This is a very poorly defined area. I generally take the patient off Mirapex for a few months. A few weeks or less might be adequate, but I am not sure about this (I doubt there is anyone who knows this for sure). Since most everyone who I change to Permax does well, I have not had much opportunity to experiment with this.

Sent: Friday, November 19, 1999 5:11
AM Subject: RLS

I am sitting here at work crying after reading some of your letters from other sufferers and realizing I'm NOT the only one fighting this weird syndrome! I've been very lucky to have a doctor who did some research and put me on clonazepam. One-quarter of a .5 mg tablet seems to be sufficient.

I do have a question: My beautician says I have more static electricity in my hair than anyone he has ever dealt with in his 25 years of cutting hair. Does anyone else have this problem? The reason I ask is, my RLS feels like tiny electrical "pinpricks". Could there be a correlation?

Thanks!
Connie M.

Medical Reply

There is no correlation between static electricity in your hair and the "electric" feeling of your RLS (the only connection is the use of the word electric for both conditions).

Even though you are taking a very small dose of Klonopin, you still need regular drug holidays (5 days off the drug every 2 weeks or so). Xanax or Ambien (at low dose) would be a much better treatment with shorter drug holidays needed (2 days every 2 weeks).

If you need the medication every day, you should consider having your doctor prescribe Mirapex on a regular basis. You would then likely not need any bedtime sedative.

Sent: Friday, November 19, 1999 6:32 AM
Subject: RLS in one leg only?

I'm 39 years old and have had minor bouts with RLS of and on since I was a kid. In the past year, however, I've had increasing achiness in the left leg when I lie down, but not the right leg. Is it common for RLS to affect only one leg?

Jon D.

Medical Reply

It is much more common to have RLS in both legs, but a small percentage (there are no numbers known, but I will guess that it must be 2-10%) who have it only in one leg. There are some RLS sufferers who have it only in one arm.

Sent: Saturday, November 20, 1999 11:13 AM
Subject: Restless feet

I am a 53 years old male, having this problem for over 30 years, and appears to be getting worse, especially with stressful days. This started with sudden appearance of varicose veins on top of  both feet. During initial bed time, there are symptoms of restless feet and no sleep. Some relief gained when I put my feet on pillows. Cold water spray gives additional relief.

During office meetings my feet do ache and bother me. The removal of my shoes is necessary with frequent feet movement. I always thought it was due to low blood pressure and dismissed the problem. The onset of aching and a feeling of swelling of the feet occurs when I sit. Movement relieves the pain. Shoes are unbearable and wearing them is bothersome.

This week I decided to seek medical help and my doctor suspected that it is due to my LDL cholesterol level which is  slightly high and possibly due to  blocked arteries around the feet. He prescribed Lipitor (atorvastatin), multi-vitamin B and suggested that I place magnets around the feet during the sleep. I don't have any chronic disease. I don't have high blood pressure and diabetes, and my family history is negative.

Since this problem started when I was young, I doubt the recent  boderline LDL cholesterol is the reason which causes my feet problem. Please reply if the medication is appropriate and any medical information that can relief this horrible sensation. It deprives me of sleep and concentration of work.

Thanks,
George A.

Medical Reply

Your problem has nothing to do with your high cholesterol or your varicose veins (both of which are very common problems). You have RLS and need treatment specifically for this condition. Forget about magnets!! They do not help RLS at all.

Please check out our RLS Treatment Page and discuss starting one or more of these therapies with your doctor.

A Reply from George

Thank you for your letter about RLS.

Recently, I tried the ' DEEP COLD THERAPY" with menthol analgesic gel. The pain and tingling has relieved instantly( rubbing between the toes). I can go to sleep better. I would like to share this experience with other suffers.

Thank you very much,
George A.

Sent: Sunday, November 21, 1999 10:44 AM
Subject: Percodan

I have been taking Ultram for RLS and it has been fairly successful. When I take the drug holiday I've had less success. I've tried Ambien,Vicodin, Tylenol with codeine and trazadone, but am awakened with pain, and difficulty going back to sleep. Now I'm trying the generic Percodan. I used it last night and it was helpful although I'm still tired today; however, I can deal with that.

I'm wondering if you think this is good to take, and hoping that it doesn't work on the same brain sites (or whatever it is) as Ultram; thereby deleting its purpose.

Thanks again for your help.
Sue H.

Medical Reply

We are not sure if Ultram works on different receptors in the brain compared to the narcotic medications. It is presumed that it does hit different receptors and therefore seems likely that there will be no cross reactions and that you can use one as a drug holiday from the other. Practically speaking, alternating narcotics and Ultram seems to work well for most RLS patients.

More importantly, you probably should be on Mirapex, and then you might not need any pain killer medication for your RLS.

Sent: Monday, November 22, 1999 12:36 PM
Subject: RLS in children

I heard about RLS on Good Morning America recently. I had no idea that such a thing existed. I have a son who sometimes complains about his legs hurting and he has a really hard time sleeping. So far it has only occurred at night. I assumed he was having leg cramps or "charley horse" as some call it. Can you tell me the cases of children being diagnosed with RLS? And what should I tell his doctor?

Thank you very much,
Lisa J.

Medical Reply

It is very common for RLS sufferers to admit that their symptoms started at a very young age, often as early as they can remember. Almost none of these cases were diagnosed until many years later.

It is obviously much more difficult to diagnose a child, especially for a disease that is very difficult even for an adult to describe (and get help for from most doctors). If your son gets this feeling in his legs predictably when he is at rest (and especially when he tries to go to sleep), and the feeling is associated with an almost irresistible desire to move his legs, then he may have RLS.

You must then discuss this with your son's doctor. If this does not get treatment for your son, then please try to see a sleep specialist.

Sent: Tuesday, November 23, 1999 10:07 AM
Subject: Sinemet CR

Am taking Sinemet CR 25/100, two pills 1/2 hr. before bedtime. Still have excessive daytime sleepiness. I don't think my legs twitch so I don't know why I am still tired. I was recommended to switch meds to Mirapex or Requip. I have been diagnosed also with mild sleep apnea. So, could I take a mild sedative also? I wake up frequently during the night. I will be seeing my sleep doctor Dec.10th. Just wanted to bring some options to him.

Medical Reply

This is a difficult question as sedatives make sleep apnea worse. Generally what we do is a trial of Mirapex without a sedative and see if that resolves your daytime sleepiness (at the correct titrated dose of Mirapex). If that does not help, then you can try a sedative for a few nights to see if your daytime sleepiness gets worse (from the sedative worsening the apnea) or better (the sedative not affecting the apnea but helping the PLMS). If you do use a sedative, you should probably have a repeat sleep study to see if the apnea is really not worse and the PLMS arousals are being controlled.

Sent: Tuesday, November 23, 1999 5:03 PM
Subject: Severe RLS

My name is John and I would like to express my gratitude for this web page. To anyone reading my story, I sincerely share and empathize with your suffering, as I know millions of others do. I am a thirty-nine year old male who has put up with this problem for as long as I can remember. When I was a kid, I used to toss and turn at night for hours in bed at night, until I would pass out from sheer exhaustion. I didn't learn until recently that there was such a thing called restless legs syndrome, and even though I don't have all of the facts (does anyone have all the facts?).

I can tell you with the utmost certainty that this is a hereditary disorder. Both of my parents had it, some of my siblings have it, a few cousins, and me. My biggest fear at this point is that I have passed it on to my young four-year-old son and our unborn child whom my wife is expected to deliver in December. This is not a legacy that I want to leave, but unfortunately, it happens. My RLS has intensified over the past six years to coincide with the short time I've been married. Needless to say, it's put a strain on our time together and I end up resorting to sleeping on the couch most nights. I average four to five hours sleep at night. I get so restless lying there that through my frustration in trying to fall asleep, I've broken out the sides of the couch from a constant barrage of kicking.

I'm sorry to say that I haven't found a magic pill yet. I've been recently seeing a specialist in neurology who took me off of the Klonopin I was using, and had me taking Sinemet instead. I have not seen any benefit from the Sinemet and stopped using it altogether. Complicating the issue is the fact that I am using Zoloft for depression which works great, but according to the doctor, promotes or aggravates my restlessness. Occasionally, I use non-caffeine herbal teas, Valerian root, melatonin supplements, Ambien, and over the counter sleeping aids to facilitate getting to sleep. These rarely work for me. So it looks like yet another trip to the doctor and trying something new.

I plan to get involved with discussion groups and read as much as I can on the subject. Anybody that would like to correspond with me may do so at: skinner@hirschelectronics.com. Sweet Dreams to those that are able to dream at night.

Sincerely,
John S.,
Tustin, CA

Medical Reply

You probably should be given a trial of Mirapex or Requip. It works better than Sinemet, and failure with Sinemet does not mean that the other Parkinson's disease medications will not help. Pain killers may also help (Vicodan or the non-narcotic Ultram). It often requires a combination of medication taken judicially to control severe RLS symptoms.

The anti-depressants can make RLS better or worse. Remeron and Wellbutrin may have a slight advantage over the SSRI's (Zoloft, Prozac, etc.) for treating RLS patients.

Sent: Tuesday, November 23, 1999 8:02 PM
Subject: Drugs and RLS

I am the leader of a support group in Scottsdale, AZ, and one of the members is having quite a problem. Her original medication for RLS was Klonopin, but after 3 years it seemed to lose it's ability to keep back the RLS, so she was put on various medications - the ones common to most RLS people - Neurontin, Permax, Mirapex, Requip, and Sinemet. At least these are all the ones I recall her telling me about. She began having problems with speaking. At first her speech was just slurred a little. But now it is almost impossible to understand what she says. You can see her struggle to get the words out. She doesn't seem to be mentally affected, merely unable to voice the words.

She has gone back on Klonopin for the RLS, at .5 mg, but the speech struggle continues. Her doctor, who admittedly knows nothing about RLS, has seen that she has had cat scans, MRI, and all the various tests of that nature, but nothing shows up as being problematical. She is 85, and her husband is 86, and he is about to lose his mind trying to figure out how to help his wife.

Have you any suggestions? This is a new symptom to me and our group, and I don't know how to advise her.

Thanks so much for any help you can give.

Lynne G.,
Scottsdale, AZ

Medical Reply

I doubt the speech problem has anything to do with RLS or her RLS treatment. The problem is most likely neurological in nature. Not every neurological deficit can be associated with an abnormal CT and MRI scan, especially in an 85 year old. My only advice is to change the Klonopin to Ambien which is much shorter acting and will not result in daytime sleepiness or other problems.

Sent: Sunday, November 28, 1999 12:07 AM
Subject: Mirapex

Thank you for the website, it has been gratifying for me to know that this is in reality a condition that other people have. I have suffered from restless legs for the last 20 years and had no relief, other than masturbation. I started taking clonazepam about 2 years ago, and because it seemed to be losing its ability to curb the dreaded 'shpilkes' (Yiddish word for not being able to be still), I decided to take a drug vacation.

After a lot of talk with my doctor and finding out that many of the drugs listed on the net are not available in Canada, my doctor has finally recommended Mirapex, .25 mg. I started taking it this week and am weaning myself off of clonazepam by cutting it down to half a mg (half the dose). I have been experiencing dizziness, stomach upset (have a history of heartburn, etc and I do not eat wheat, other types of gluten because of it). So now I'm not sure what to do. I am taking only a half of the .25 Mg at night.

The dizziness and the heartburn are worrying me but the restless legs are tamed.   What should I do?

Annie W.
Victoria, BC, Canada

Medical Reply

It is difficult to be sure whether the new problems that you are experiencing are from your new medication, Mirapex, or from possible withdrawal symptoms from your clonazepam. A quick test would be to discontinue Mirapex for a few days while maintaining your clonazepam dose and see if the symptoms go away (an alternate way would be to raise the clonazepam while keeping the Mirapex dose the same). If it does turn out that Mirapex is the source of your new trouble, then you have a few choices.

1) You could lower the dose of Mirapex by changing to the .125 mg tablets and taking only a half of a tablet. If this works well, then increase by only a half a tablet every week or so, if a higher dose is needed.
2) You can stay on the same dose and there is a reasonable chance that your body will adjust (try this choice only if you cannot get the lower strength tablets as detailed above).
3) You can change to Requip or Permax (Requip is the better choice as far as side effects are concerned), but start at 1/2 of the lowest dose available (.25 mg and .05 mg respectively).

You are right to get of off clonazepam. Xanax or Ambien (not available in Canada) are better drugs which can be used on an as needed basis if a sedative is needed.

Hopefully with the right therapy you should not be bothered by the dreaded 'shpilkes' again (note that we already have this term for RLS on our list of "You Name It - Other names people use for RLS" on our homepage).

Sent: Saturday, December 04, 1999 8:36 PM
Subject: RLS

I was wondering if you have had any reports of Ultram making RLS worse. It seemed to have happened with me. I took 50 mg with 900 mg Neurontin and .5 mg Mirapex, and it was the worst night I had since starting new meds regime.

Thanks for your help,
R. R.

Medical Reply

Usually Ultram either helps or does nothing. As anything is possible with RLS, it is certainly possible that Ultram can worsen RLS (but very uncommon). I have seen many cases of the other RLS medications paradoxically cause worsening of RLS.

Sent: Tuesday, December 07, 1999 9:17 AM
Subject: Electricity and RLS

I have a new theory and wanted to run it past you. I recall reading a letter in this website from a woman who thought RLS sufferers were more sensitive to electricity than normal people. Well, I had an interesting experience. I don't think it's all coincidence. The other night, I was decorating the Christmas tree with what turned out to be 500 little lights. Then for fun, I was dancing around with a strand of 70 lights (plugged in. The lights, not me) for a few minutes.

Now, after you get that ridiculous vision out of your mind, this is what happened. My RLS is controllable at bedtime with Oxycodone. It works every time. Last night, I ended up taking a total of 10 mg during the entire night. That's twice as much as usual. It still didn't work and I was awake all night. That's how I came up with this theory. I was up for it, so to speak.

I realize what a stretch this is, but RLS is so mysterious. It seems to me that if it involves the cerebellum, spinal cord and central nervous system as they say, then electricity (which naturally occurs in your body anyway, right?) could play a part in aggravating it. I'm not saying it's the cause of RLS, just an aggravating factor.

I do recall that some of my quieter RLS years were when I had a job that didn't have computers. A little electricity there staring us in the face every day.

Anyway, maybe if we all put our heads together someday we will figure this out. As for me, NO MORE dancing with Christmas lights on !

Thanks, Pat

Medical Reply

Your theory about electricity worsening RLS is as good as any other, as we really know very little about the pathophysiological causes of RLS. From my experience with patients, I would bet that the exercise of dancing around the tree had more to do with the worsening of your RLS that night than did the tree lights.

Sent: Wednesday, December 08, 1999 2:47 AM
Subject: RLS

I am a 47 year old female in Canada with what is diagnosed as severe RLS. It occurs every time I am sitting still or trying to sleep and has spread to my arms. Torture, is the way I describe it, yet I get some relief from Mirapex, a new drug the doc gave me last week. I've had RLS since I was 40 and feel lucky I haven't had it all my life.

Much sympathy to those of you who have RLS, especially for much longer than I. It is really depressing that there is no cure and that it doesn't go away, at least not that I've heard.

If any one of you know differently, please message me back.

Yours in suffering (but still trying to smile),
Teresa

Medical Reply

You are right in that there is no real cure for RLS, but there is now excellent treatment available. Mirapex is one of the best drugs for treating RLS. Have your doctor titrate the dose (according to our RLS Treatment Page ) and most, if not all of your RLS symptoms should be relieved.

RLS generally does not go away, although I have seen several cases where it does seem to disappear forever. Mostly, it does get slowly worse with age.

Sent: Wednesday, December 08, 1999 8:53 AM
Subject: Mirapex

If you remember me, here's yet another question. Thanks for all your help. Anyway since starting to take Mirapex I have experienced slight tremors in my hands, mostly in my left hand. And a partial loss of the ability to control my pinky on my left hand. These symptoms occurred after being on Mirapex for a while--probably after more than 2 weeks. The symptoms were intermittent. Upon increasing the dose 2 days ago, they got worse. Thanks for your help, it is deeply appreciated,

R. R.

Medical Reply

Your problem is very unusual for a side effect from a medication as usually side effects that cause muscle-skeletal/nervous system problems do so more generally, not just one finger on one hand. Mirapex occasionally does cause some nervous system or muscle weakness problems, but the reports are not similar to yours. This does not mean that Mirapex is not responsible for the complaints in your left pinky, but there may be other problems causing it.

I good test is to stop Mirapex and see if the symptoms go away, then come back with restarting it. If Mirapex is causing this problem, then you may want to change to Requip.

Sent: Wednesday, December 08, 1999 2:44 PM
Subject: Re: mothers restless legs

Thank you so much for replying to all my e-mails. Mother did go to the Neurologist yesterday and he is starting her on Neurontin, 300 mg 3 times a day. I have not seen this listed for Restless Leg. Do you know anything about it? I read it is used for epilepsy and seizures. She is a little afraid to take it and thinks 900 mg is too much. She is getting pretty worked up over the side effects she has read.

Thanks,
Claudia B.

Medical Reply

None of the RLS drugs are officially listed for use in this disease. They are all drugs that are used for other disorders and have been "borrowed" for use in treating RLS. You can find Neurontin listed on our RLS Treatment Page with information on how to use it. It is one of the better medications to use when the 3 major classes are not sufficient (sedatives, Parkinson's disease drugs, and narcotics).

This drug can cause side effects, so I generally start low and work up to higher doses. For younger patients, I start with 300 mg at bedtime, then add doses during the daytime if necessary. For elderly (over 70-75 years), I often will start at 100 to 200 mg at bedtime, then increase slowly. Check with your neurologist to see if he will decrease the dose to start with, then increase as necessary and as tolerated.

Sent: Friday, December 10, 1999 9:18 PM
Subject: Permax

My doctor just switched my meds from Sinemet CR 25/100 2 pills, to Permax..05 mg, 1 pill to start. He said I could increase every three days as necessary. I am very concerned with side effects. Nasal stuffiness, which I already suffer from and nausea?

My doctor said he preferred Permax to Mirapex. He talked about sleep episodes reported with Mirapex. So tonight I will start the Permax.

Any suggestions?
Debby

Medical Reply

Permax does work well for many RLS sufferers if taken correctly. We generally recommend to increase the dose every 5 days instead of every three days. You can even increase by only 1/2 of .05 mg tablet if you have concerns about side effects (the slower you increase, the better chance the body has to get used to the drug).

RLS specialists still consider Mirapex the best RLS drug. It tends to work better than Permax (for most, but not all RLS sufferers) and has significantly fewer side effects. The newly reported daytime sleepiness occurs only at doses above 1.5 mg, which equals 12 of the .125 mg tablets (.125 Mirapex = .05 Permax) per day. That is a very high dose for RLS, and over 95% of RLS sufferers do not even get close to that dose.

A Reply from Debby

Sent: Saturday, December 11, 1999 10:18 AM
Subject: Permax

I started Permax last night,  one of the .05 mg tablet before bed. For about four hours I had nausea, stomach pains and gas. Even today I am still queasy. Would you recommend cutting the pill in 1/2? And how many days should I let go by before increasing the dosage. My doctor said 3, maybe it should be more? Also, would taking the pill with a glass of milk help?

Thank you. Am very nervous about taking the Permax again!
Debby

Medical Reply

As per my previous email, try cutting the pill in half and increase at 5-7 days intervals. If you can't tolerate it, discuss Mirapex with your doctor again. Some patients have found that taking Permax with a little food may help diminish the nausea.

Sent: Tuesday, December 14, 1999 11:56 AM
Subject: Vioxx for RLS

I thought you would be interested to know the very good reaction to Vioxx that I recently experienced during my drug holiday from Ultram.

Following are the details:

I am currently on Mirapex (0.125 mg at 8am and 3pm and 10pm): Ultram (16.66mg taken at 8am, 3pm and 10pm); and Xanax (1mg per day taken at bedtime). I have been on this program for the past eight months and am doing quite well. I take a drug holiday from Ultram every 3 weeks and although I manage, the two days are very difficult and I experience quite a lot of pain as well as the withdrawal symptoms form Ultram that I previously described to you.

I took my last dose of Ultram on Sunday November 28 at about 8pm. On Monday morning I took 25mg of Vioxx when I first started to feel some pain in my legs. The pain was gone about an hour after taking the Vioxx and I was pain free for all day Monday. I did however feel some restlessness in my legs at about 9pm and had difficulty sleeping. At about 12.30 am on Tuesday morning I was again having some pain in my legs and I took another 25 mg of Vioxx. An hour later the pain was gone and I was able to get to sleep and slept well until about 7am For the remainder of my drug holiday on Tuesday I had virtually no pain in my legs. I still had some of the slight withdrawal symptoms from Ultram, but not nearly as severe as on previous drug holidays. Without doubt this was the easiest drug holiday from Ultram that I have experienced.

In summary, my first experience in using Vioxx during my drug holiday from Ultram was very successful and I plan to use it again on my next Ultram drug holiday. Based on my experience I plan to take 25 mg of Vioxx every 12 hours during the drug holiday.

I very much appreciate your ongoing help in finding a combination of medications, which is now very successfully treating my RLS. I hope that my recent experience with Vioxx may be helpful to others.

Leon J. K.

Medical Reply

Thanks for your letter about Vioxx helping you. I have not heard of many RLS sufferers getting relief from anti-inflammatory medications, so it is quite interesting that this drug helps you. I will put this on our web page and we will see if others can benefit from this therapy. Vioxx is the second of the new specific COX II inhibitor anti-inflammatory drugs, but there does not seem any reason why the older (and much cheaper) anti-inflammatory medications (such as Motrin, Naprosyn, etc.) should not work as well.

Sent: Monday, December 20, 1999 5:08 AM
Subject: Birth Control Pills & RLS

I was wondering if there was any evidence that birth control pills can make RLS worse. Thanks for your help,

R. R.

Medical Reply

There is no real evidence that birth control pills affect RLS. We have gotten letters from women who start hormone pills or have gone into menopause that their RLS may get better or worse. There are even many accounts of RLS being affected by changes in a women's menstrual cycle. The mechanism of any hormonal influence (or why only a few RLS sufferers experience this) is not understood.

Sent: Monday, December 20, 1999 7:24 PM
Subject: Mirapex (see previous letter Dec. 7, 1999)

Hooray ! I finally had my appointment with the neurologist/sleep specialist in my community. I was impressed with her knowledge. She gave me a choice between Permax and Mirapex. I went with the Mirapex after paying such good attention to this website ! I'm taking half of .125 at 6 P.M. and again at bedtime. Does that sound normal? The first dose has certainly calmed down my RLS but my brain feels a little looped. It shouldn't present a problem at bedtime.

I'll be having an overnight sleep study done. Also, I gave blood for testing and am having a nerve test in a week. She wants to make sure that my RLS/PLMD is not secondary to some other problem.

We discontinued to Oxycodone for now. She doesn't like the potential for addiction and said she has RLS patients who absolutely will not take any other drug EVER and she worries about them. So now it is 5 mg of Hydrocodone at bedtime with the Mirapex.

I felt like I knew exactly what to ask at the appointment because of this great website and all the information I've gotten here.

Thank you so much,
Pat

Medical Reply

It is alright to start at a low dose with Mirapex and increase slowly (by 1/2 of a .125 mg tablet). You legs should settle down completely when you reach the right dose of Mirapex.

A Reply from Pat

Sent: Sunday, December 26, 1999 1:55 PM
Subject: Mirapex

I know I'm repeating myself, but I am so happy with Mirapex. It took me a long time to get on it because I was working with my GP and he wasn't interested in doing anything beyond painkillers. (And he wasn't too helpful there either!) I am taking such a small dose of the Mirapex and my severe RLS has gone off to some corner of my body to cower. The only side effect I've noticed is achiness. The muscles and bones that used to suffer the restlessness are now achy. I don't mind trading achy for restlessness AT ALL ! I find that my 5mg of Hydrocodone at bedtime really helps the aches.

Continue getting the word out on Mirapex. For me, it is a true wonder drug.

Pat

Medical Reply

You might try (with the supervision of your doctor) a slightly higher dose of Mirapex. Often increasing by 1/2 or 1 pill (of the smallest .125 mg dose) may eliminate even the residual achiness that you are experiencing.

Sent: Sunday, December 26, 1999 5:56 PM
Subject: RLS made better by urinating?

My name is Jeanne. I am a 49 year old female. Looking back, I realize that my RLS started about 20 years ago when I was pregnant. I also was severely depressed at this time, and after the 2nd trimester of the pregnancy my doctors advised me to begin taking Elavil. Since that time, I have been on several different antidepressants and am now on Serzone and amitriptyline (Elavil). I do not know for sure if either the pregnancy or the antidepressants may have caused the RLS.

I have the discomfort behind the kneecap and cramping in my calf at night or if I sit for a long period of time. I also have just been diagnosed with spondylosis. I wonder if this doesn't have something to do with it-- a pinched nerve or something? A pinched nerve and bone spurs are causing pain and numbness in my left arm and hand . Any way, I find that when the symptoms start, If I get up and go urinate I have relief from the RLS. I often don't even feel like I need to urinate, but am able to empty my bladder and this seems to relieve the pressure that aggravates the RLS. Does this make sense to anyone else? I also get some relief by taking an aspirin and a vitamin E. I hope these suggestions help someone else out there. It is a miserable affliction to have. It does help to know you are not crazy or alone though.

Best wishes to all of you and God Bless, Jeanne M.

Medical Reply

We do not know what causes RLS, but drugs (such as anti-depressants) and pinched nerves merely triggers or worsens RLS. Pregnancy is a trigger of RLS and is often the first time that a female RLS sufferer will experience their RLS symptoms.

I have no idea why urinating or taking an aspirin or vitamin E helps your RLS, as very few, if any RLS sufferers get relief from those treatments. If your RLS gets worse, and does not respond to your unique treatments any longer, consider therapy with Mirapex or Requip.

Sent: Monday, December 27, 1999 10:33 AM
Subject: What to say

I, too, am very pleased to discover so many other people with the same illness. Mirapex is helping me, but my doctors are unwilling to give me any sedatives for my chronic insomnia.

My question is, what is the best way to let friends know about what it means to have this illness? I need to keep to a regular sleep schedule (no evenings out as a consequence) and even good friends keep trying to get me to stay out later; not so good friends think I'm really weak for not being able to go without sleep. Medical people, especially, are really disdainful of others being bothered by lack of sleep. I've begun to think about lying, telling people I have to get home early to "do something" that they would find more acceptable than going to bed!

Mary C.

Medical Reply

Doctors are reluctant to prescribe sedatives for sleep as there is a very high amount of addiction to these pills. If you can convince your doctor to give you enough pills for one every other day (3 to 4 per week) the likelihood of getting dependant on sleeping pills is reduced to almost nothing.

Although a regular sleep wake schedule is important, the wake time is the more important of the two. If you do have to stay out late from time to time, just remember to take up at the same early time the next day. That should minimize the trauma from attending some social obligations.

Sent: Monday, December 27, 1999 11:14 AM
Subject: RLS relief

In my own lifelong experience with RLS (since I was a young boy,  I am now 51), I have noticed a few things that help me that I haven't seen mentioned elsewhere.

1. Beta-blockers. I have taken various meds for mild hypertension since my mid-20s. I have noticed that the beta-blockers provide partial relief for RLS. The two beta-blockers I have tried are LoPressor (the generic is metoprolol, which also caused an ugly depression for me) and Corgard (generic name Nadalol). I have taken Corgard (one 40 mg tablet nightly before bed)for approximately 15 years, and I can tell when I forget to take it because my RLS symptoms are especially bad.

2. My other "trick" is a just a special form of exercise. My usual routine is that I go to bed, immediately fall asleep and then wake up within 30 minutes with RLS symptoms that last for 1-4 hours. For relief, I get up and do a single knee bend in which I bend until my thighs are approximately parallel to the floor, and then remain in this position until I can no longer stand the strain (approximately 45 - 60 seconds, I would estimate). When I stand up, my legs are so wobbly from fatigue that I cannot walk normally. If I go immediately back to bed, I may get an hour's relief, which often is enough for me. I should also point out that I never turn the lights on (that makes me wide awake), and that this exercise is better than doing regular knee bends to exhaustion, because that would make me hot and breathless compared to the more modest exertion as in the described method.

The main drawback to the knee bend is that it has a training effect, and after a while, it seems to lose some effectiveness.

It's just one man's experience, but I hope it can help someone.

Bill D.

Medical Reply

Thanks for your letter with your tricks to help treat your RLS symptoms. These are often helpful for many other RLS sufferers. It has already been shown that beta-blockers can help RLS. There are a few studies with Inderal (propranolol, the oldest and original beta-blocker) which demonstrate that it alleviates RLS.

Many RLS sufferers have special exercises that help their RLS symptoms. Yours is a little different and may benefit others.

Sent: Monday, December 27, 1999 9:42 PM
Subject: Quinine for RLS?

I have had RLS for over 25 years and only recently found out this disorder has a name and others sufferers, too. My question is this...my doctor prescribed quinine tablets for my leg cramps....I also take (daily) Prilosec for reflux, Zocor for high cholesterol and Zoloft for depression. I read about the meds you listed on your page but did not see any reference to quinine.  Should I continue? Are there long term side effects? Can you recommend another medication?

I would be eternally grateful for any help you can give.

Many thanks,
Russ C.

Medical Reply

The reason that quinine is not listed on our RLS Treatment Page is that it is not a treatment for RLS (except in a few rare cases). Doctors who are not familiar with RLS very often will prescribe quinine because the only condition that will come to their mind when they hear a patient's description of RLS symptoms is leg muscle cramps, and quinine is the correct treatment for leg muscle cramps. Unfortunately, quinine very rarely helps any RLS sufferers.

The correct treatment for RLS is Mirapex or Requip. These are currently the first choice of drugs by most RLS specialists. Unfortunately, most doctors (and likely your doctor) know very little about using this drug in general, and for RLS in specific. You may have considerable difficulty convincing him or other doctors to prescribe this medication for you (even when armed with the several medical articles supporting the use of these drugs for RLS). Sometimes you have to see an sleep specialist before you can get this treatment.

By the way, anti-depressants such as Zoloft, may make RLS worse (more often) or better.

Sent: Tuesday, December 28, 1999 1:00 AM
Subject: RLS and Klonopin

I discovered your very informative and relevant website a few weeks ago. Thank you for being there. I call my sleep problem having "legs" or "legitis". I believe that I have had it for a long time but have had treatment of Klonopin 0.5 mg for about 7 years. At first, this medication was very helpful and is still effective in relieving the disturbing sensations in my body but I get only a few hours of consecutive sleep. I often go to sleep for about an hour or two without meds and then awake and must deal with the legs and start with 1/2 pill and on rare occasions have taken as many as 4 pills.

I have taken many of the antidepressants that have been mentioned in your letters and I do so badly on them that I fear to experiment with any more of them. Lithium seemed to be a definite major trigger to my problem. I get very depressed at night being up and restless. But once I do get back to sleep usually the next day the depression and the "legs" are gone. I have lost the ability to concentrate and can't enjoy reading or other quite activities and have not worked for a few years. I take naps during the day and have been told that I should not but I must because that is when I catch up on the dreaming that I seem to need to do.

Most of the time I do not experience severe movement, but I am up every night for 1 to 4 hours. Also, I am wondering if the transition from one type of drug such as Klonopin to another is difficult, what is the best way to accomplish this? I had never heard of drug holidays before reading your material. Tomorrow I am going to see a sleep specialist from the list at your website I hope for some improvement.

Thanks for listening,
Patricia E. R.

Medical Reply

It can be relatively easy to transition from one benzodiazepine (Klonopin) to another. You could change to Xanax, which is a shorter acting benzodiazepine and is much easier to be off of for drug holidays. Ambien is another choice of a non-benzodiazepine drug that can be used instead of Klonopin. The Klonopin can be tapered (take 1/2 a pill for a few days, then even a 1/4 for a few days) when changing over to another medication.

Speak to your doctor about starting Mirapex or Requip. This type of medication may eliminate your RLS symptoms and even avoid the need for any of the above sedative medication.

Sent: Tuesday, December 28, 1999 8:23 PM
Subject: Two questions re RLS and narcolepsy/cataplexy

1. Is there any indication that Mirapex does the same thing as Sinemet CR? I have been taking Mirapex for nearly a year and for the past month or so I have had an increasing problem with my RLS, which in me is a 24/7 disease. At first a milligram every 24 to 30 hours kept me almost free of RLS but now it takes 2 to 4 a day and I'm not really sure if it is helping.

2. Could the fact that I take Vivactil for my cataplexy and Mirapex for my RLS be causing me problems? I don't think the Vivactil does a whole lot of good, although I thought it did when first prescribed about 10 years ago. The cataplexy has gotten so uncontrollable lately that I am seriously considering a wheelchair for use when I leave the house because of the frequent episodes that impose such a burden on my wife, daughter and/or a few friends that tolerate me. I can't even THINK of a wisecrack or humorous retort, or anything else that triggers the cataplexy anymore. (The narcolepsy is worse too. I can't drive to the mailbox a block away without catnapping, and in 1991 and 92 I could double up on my 20 mg of Ritalin and drive to a relative's home 750 miles away).

Medical Reply

Vivactil is in the class of anti-depressants (tricyclics) that very commonly makes RLS worse. Since it is not helping your cataplexy problem, it would be reasonable to discontinue the medication. If your RLS gets better, then nothing else needs to be done with your Mirapex, except possibly to lower the dose if possible.

If stopping your Vivactil does not help, then the problem could be that you are becoming tolerant to Mirapex. This is somewhat different than Sinemet, as there is generally no associated rebound or augmentation. Since there is no cross tolerance of Mirapex to Permax (the older dopamine agonist), a change from Mirapex to Permax may resolve your RLS. I have a few patients that switch over from one to the other every several months and are doing very well.

Sent: Wednesday, December 29, 1999 2:47 AM
Subject: RLS not better with Neurontin

My name is Sarah, I am 15 years old, I have had RLS since I was about 5. My grandfather had it, my aunt has it, most of the people in my family have it to some degree,  my aunt and I are the worst. About a year ago I talked to my doctor about it and he put me on 100 mg of Neurontin, it doesn't work. I need something stronger to keep the urge to move and stretch constantly away!

The one thing that works temporarily, although a pain in the butt, is keeping my legs elevated above my heart, also sleeping in a cooler than usual room seems to be slightly effective. Are there any drugs I can take that are non-addictive, but will cease the need to move? Please help!

Medical Reply

Neurontin is helpful for many RLS sufferers, but most will need a higher dose than you are taking. It is very unlikely that 100 mg of Neurontin will bring relief to anyone with moderate to severe RLS.

Mirapex is a much better drug for RLS with a much higher success rate at controlling RLS symptoms. It is not addicting and generally well tolerated. Have your doctor give you a trial on this drug or its cousin, Requip.

Sent: Saturday, January 01, 2000 3:01 PM
Subject: RLS in pregnancy and Baclofen

I have suffered with RLS for many years but very badly during my 3 pregnancies. My gynecologist found a drug called BACLOFEN which is used to help Multiple Sclerosis sufferers. It was brilliant and eased if not cleared the restless legs and caused no problems at all to my three very healthy babies. I still get RLS but only if I get run down/tired , recently I have had hormonal problems and RLS has reappeared more frequently. Is RLS hormone based, do you think?

Alison H.

Medical Reply

Baclofen is a drug that is used to relax the muscles in patients with MS. It has had only very modest success in treating RLS symptoms, but some patients, such as yourself, have noted significant relief of RLS symptoms with Baclofen.

RLS is very common during pregnancy and usually leaves after the baby is delivered. There is however, a very good chance that you may get RLS later in life. Many women notice that there is a hormonal influence to their RLS symptoms. The problem is that there does not seem to be a reproducible pattern. Some get better with starting hormone pills or with menses, other get worse. Hormones definitely seem to interact with RLS, but how and why are not yet understood.

Sent: Sunday, January 02, 2000 6:24 PM
Subject: RLS, PLMS and multiple sclerosis

It is interesting and helpful to read other people's experiences. Thanks for the page!

Perhaps you can help me. I am a 52 year old female who has had relatively benign MS for more than 30 years. The MS has resulted in visual impairment in the left eye and some bladder dysfunction (have to self-catheterize) but am otherwise OK and have an active professional life, and am happy personally.

I started experiencing what I now know to be RLS and PLMS symptoms in late 98. At the time I thought these symptoms were an exacerbation of the MS and went back to my neurologist at the suggestion of my partner who was finding interrupted sleep hard to manage. The neurologist. suggested a sleep study which confirmed the PLMS (movements every 20 seconds for periods of time) and recommended Sinemet and Sinemet CR.. This worked for three months and then I had problems with augmentation.

Then I moved to Permax and am currently taking 500 mg just prior to bed time. The RLS symptoms are quite bad from 5.00 p.m. so I also take one 250 mg Sinemet tablet when these symptoms occur and this gives temporary relief. However, the PLMS are now returning with force and both my partner and I are finding it hard to manage. Tonight I am going to increase the Permax to see what happens. The neurologist said he thought somewhere between 500 mg and 1000 mg might be an effective dosage. However, the Permax makes me feel nauseous in the mornings and sometimes sleepless in the evening. I also seem to be putting on weight, but have started a moderate program of exercise and have revised my diet with the aim of dealing with this.

Sometimes I am so tired in the late afternoon/early evening that it I'm almost compelled to have a nap. The need to sleep is so great that it it is almost a disability as it is often not possible professionally to sleep then.

What other options might I have? There is not so much awareness in Australia about RLS and PLMS as sleep disorders. I have made an appointment to see a specialist in Chinese medicine in mid January, and am thinking seriously about consulting the neurologist who specializes in sleep disorders at the Alfred Hospital in Melbourne, who initially diagnosed these disorders in me. He felt, as did my MS neurologist (whom I really like) that the RLS and PLMS were not related to the MS, but I am beginning to wonder about this.

Would appreciate any suggestions you might have regarding medication regimes and the possible relationship of both disorders.

Many thanks,
Kate S.

Medical Reply

I am a little confused about the dose of Permax that you are taking. It comes in .05 mg (which is = 50 micrograms) and .25 mg (which is = 250 micrograms). RLS patients usually need between 2-8 of the .05 mg tablets per day (100-400 micrograms), so your dose (which I am assuming is in micrograms, not mg) is much higher than most RLS sufferers and may help account for the side effects that you are experiencing.

Mirapex and Requip are the newer dopamine agonist medications that have replaced Permax for RLS. They are more effective and have less side effects than Permax (in general). If you can obtain either of these medications in Australia, they should be able to take care of your RLS problems without significant side effects.

Baclofen is an MS medication that has helped some RLS sufferers, so it may perform a double service for you. Neurontin may also be helpful.

As far as we can tell, there does not seem to be any relationship between RLS and MS.

Sent: Monday, January 03, 2000 1:03 PM
Subject: RLS not better with Neurontin

My father has RLS. He is 75 years old and also has was diagnosed with a peripheral neuropathy at the age of 58. The RLS syndrome was diagnosed 2 years ago. He took Neurontin for 2 years. It was effective in reducing his leg kicking at night and he was able to sleep fairly well. It is no longer effective. His doctor had him try three other drugs, for 10 days each last September. They were not effective.

His neurologist only suggestion is to increase the Neurontin but so far that hasn't been effective. Do you think that Mirapex would be? He kicks all night and there is also movement during the day but not as severe as at night. He is also experiencing a lot of pain in his thighs. The neuropathy continues to progress. He can walk with a walker. He recently came down with pneumonia, became dehydrated and is sleep deprived. I am anxious to get dad's past drug history and forward it to you. But for now, would you have any suggestions? Would you recommend the Mirapex?

Thanks in advance. Your site contains a wealth of info and I am hoping we will be able to find some answers.
Sherri H.

Medical Reply

You do not mention the names of the three other drugs that he tried last September, but Mirapex (and its cousin, Requip) is the best RLS drug at this time. There should be no reason why he should not try this drug, but just make sure that he starts at a low dose (1/2 of the .125 mg tablet).

Sent: Tuesday, January 04, 2000 12:13 PM
Subject: symptoms after head injury

I have noticed these symptoms of leg pain and restlessness after I received a head injury one year ago. I have bilateral vestibular damage and have an abnormal balance test with visual and vestibular abnormalities. I find that when I stand I have to constantly shift my weight from heel to toe to stay in one place.

I have noticed at night that my legs to ache, have a tingling feeling, and at times I want to keep moving them to get comfortable. Some nights I am up most of the night due to the symptoms. I attributed this to the loss of balance but could it be something else, or caused by the head injury? thanks

Edna B.

Medical Reply

It sounds as if you have your leg complaints are due to RLS. We cannot say that your RLS problems are not caused by your original head injury since we do not know the cause of RLS itself. It is very unlikely that the balance problem is in any way associated with RLS. If the problem gets bad enough, ask your doctor for Mirapex to treat the RLS symptoms.

Sent: Tuesday, January 04, 2000 9:30 AM
Subject: Problems with Feet and Legs in Daytime

Thanks for your site. I've had RLS for the past five years and am taking Klonopin and Sinemet at night and rest very well. During the past two years, I've developed problems with my feet and legs during the day. I have extreme pain and burning in my left heel and outer foot area. Also have tingling/pins and needles in the entire foot area that sometimes extends up into my calf. Also have a heavy feeling in both legs.

I've been to a foot doctor, orthopedic surgeon, physical therapist and two neurologists. I'm scheduled for an EMG later this month for possible pinched or compressed nerve. Was wondering if my daytime leg problems could be related to the RLS?

Appreciate your help,
Audrey

Medical Reply

It is difficult to say for sure if you daytime foot/leg complaints are due to RLS, but we have heard similar symptoms in other RLS sufferers. Rebound problems (RLS problems occurring when the dose of Sinemet wears off) occur with Sinemet, which is why it is not used very much for RLS these days.

A trial of Mirapex instead of Sinemet may treat your bedtime RLS just as effectively and may have a chance of resolving your morning problems (if they are related to RLS rebound from Sinemet). Additionally, you could try a small dose of Mirapex in the morning to see if helps your new daytime problems.

Sent: Tuesday, January 04, 2000 1:07 PM
Subject: RLS? and is Ultram addictive?

I think I have RLS but am not quite sure. I am 26 years old and have had achy legs constantly for about 5 years and the past 2 have been worse and it is much worse due to lack of sleep, shopping and cold weather. Other symptoms include being tired all the time and I am constantly having to swing my legs back & forth and rub them across the bed to fall asleep When I was a kid I would wake up in the middle of the night with what I thought was "growing pains" and my 8 year old has done this a few times too. I remember my parents rubbing my legs to help with the pain and that is what I have done to my daughter.

I know that there have been times that I have twitched in my sleep. I have also had on occasion the achiness in my arms (mostly my right arm). One time when I was pregnant (about 4 1/2 years ago) I had taken a nap on the floor and when I woke my grandmother said you have "jumpy legs" just like her. I know many of family members including my sister who was diagnosed with RLS have similar experiences. I have been diagnosed with arthritis but have always felt it was more than that.

I have been prescribed many types of muscle relaxers and anti inflammatory drugs which helped none. But a year or so ago I was prescribed Ultram for back pain and found it helped tremendously for my achy legs. I think Ultram is great and I strongly believe RLS is hereditary. I think your site is great and I really feel sorry for the people who have it a lot worse than myself (if that's what I have). I am scared that it will get worse with age as it already has. I always tell people if I feel this bad now I hate to see how bad I feel when I get older!

I have 2 questions for you.

1. Does it sound like I have RLS to you?
2. Is Ultram addictive?

Please Advise,
Juli

Medical Reply

Your description is quite classic of RLS. Ultram is quite helpful for RLS, but can be addictive (although much, much less than narcotic pain killers). Have you doctor prescribe Mirapex or Requip, and then you may only need an occasional Ultram, instead of using it regularly.

Sent: Tuesday, January 04, 2000 7:11 PM
Subject: Need Advice on Medications

I have had RLS for many years on and off, but it has significantly worsened over the last 2 years, affecting my day-to-day activity. I was prescribed Permax in May by a neurologist, and for about 2 months it worked perfectly, with no side effect except slight nausea and nasal congestion. At that point it became much less effective, and the nasal congestion bothered me to the point where it became a bigger impediment to good sleep!

I have recently been diagnosed with Fibromyalgia, and am seeing a rheumatologist. She prescribed clonazepam, which gave me terrible Restless Legs and overall aches and pains - needless to say, no sleep. Then I tried Elavil, with again, an increase in Restless Legs and no sleep, though not with aches and pains. She had also wanted me to get on Neurontin once we get going with the clonazepam; at that point, I took 100 mg for 2 weeks with no noticeable effect, then stopped to try the Elavil.

What with the holidays and a busy time at work, I didn't want to risk more totally sleepless nights, so stopped everything - I had a nice period of about 6 days where I slept well - now the long nights seem to be back. Can you give me any suggestions for when I next see my rheumatologist in 2 weeks?

Thank-you very much,
Tracey

Medical Reply

Forget about clonazepam and Elavil. If a sedative is needed, then a shorter acting one such as Ambien or Xanax is much preferred. If Permax helped, then Mirapex or Requip should work very well with much less chance of side effects. If you need occasional extra help, then Ultram or Tylenol with codeine/Vicodin may be of great benefit.

Sent: Thursday, December 30, 1999 6:55 PM Subject: RLS

Has anyone had any success with taking thiamin (vitamin B 1) for RLS?

This was suggested to me by an MD from India about 20 years ago. It offers me some relief. However, I now need about 800mg for effect. Quitting coffee drinking, has also been beneficial. I have had this disease since I was about 8 years old, off and on. I was so glad to hear I was not alone.

Good luck and a good cure for all,
Virginia D.

Medical Reply

Many RLS patients have had success with various vitamins. There are no medical reports of Vitamin B1 being helpful for RLS, but in individual cases, anything is possible. Unfortunately, many of the treatments like Vitamin B1 only seem to help a small minority of RLS sufferers.

Sent: Wednesday, January 05, 2000 8:41 AM
Subject: Sleep study for RLS?  (see previous letter, December 28,1999)

I had written you previously and decided to go to a sleep clinic. They insist upon a sleep study diagnosis and will not talk about medication until after it is done. Also, I was told that I need to exercise more, to lose weight, to take no naps and being unemployed, my lack of regular schedule was part of the problem. The visit left me depressed and not knowing if I should go elsewhere or if I should do the sleep study.

Thanks for listening Patricia R.

Medical Reply

If your problem is only RLS (unpleasant sensation in your legs associated with motor restlessness) then there is no reason for a sleep study. If your doctors are worried that you have PLMS that might be causing multiple nighttime arousals (and thus resulting in significant daytime sleepiness), then a sleep study would be very helpful.

Sent: Wednesday, January 05, 2000 3:46 PM
Subject: What to take on Xanax drug holidays?

First of all I would like to thank you for maintaining this site. I have taken Xanax (1mg.) at bedtime for the past two years. I take regular drug holidays for two days every two weeks. Xanax eliminates my RLS symptoms 99% of the time. Although I'm worried about the long term effects it could have, I find that it has been a lifesaver for me.

My problem comes on the drug holidays...which I dread. I first tried Vicodan but found that it made me feel anxious and did not produce sleep. At that point I just quit taking anything on drug holidays and gave up two nights of sleep. When Sonata (zaleplon) was released, my Doctor prescribed 10mg. for me to take on drug holidays. It acted much like the Vicodan did and I had terrible headaches the next day. Needless to say, I'm back to square one!

Is Ambien a choice for drug holidays or is it in the same drug class as Xanax? If so, what are my choices? Also, should I worry about the long-term continued use of Xanax even with regular drug holidays? I would appreciate any help that you can give me.

Medical Reply

Theoretically, you should not take even the non-benzodiazepine medications (Ambien and Sonata) for drug holidays from the benzodiazepines (Xanax, Valium, etc.). Practically, I have found that Ambien affords a good replacement for benzodiazepine drug holiday without risking tolerance developing to either drug. You might want to give Ambien a try and hope that it does not cause problems like the other non-benzodiazepine sleeping pill, Sonata (these side effects can be very quirky and may not occur in one because it did in the other one).

If Ambien does not help, then consider Ultram, a synthetic non-narcotic pain killer for you drug holidays. Alternatively, you may consider using Mirapex in general, in which case you may need a sleeping pill only occasionally. This is likely the best way to go.

The only risk of using Xanax for the long term is developing tolerance/addiction to the drug. One mg of Xanax is a relatively high dose, and you may want to see if less will do (you can decrease to .75 mg by getting the .25 mg tablets).

Sent: Thursday, January 06, 2000 2:20 PM
Subject: Re: RLS - treatment

The doctor has said my dad could take Mirapex instead of Sinemet for his RLS. In the meantime he increased the amount of Neurontin and Sinemet. I sent the doctor the info from your website. The larger doses of Sinemet have been effective in stopping the kicking but I still think we should switch.

Here is my question: my dad's speech is slurred. It uses to be slurred every once in awhile. In recent months it has been more evident. Do you think that the medication could cause that? He was moved to a rehab center yesterday and the admitting nurse noticed that he smacks his lips. She thought this was due to drugs. He has also done this for over a year. It seems to come and go. Do you think it was related to the drugs?

Sherri H.

Medical Reply

The smacking of lips (dyskinesia) might be a side effect of Sinemet therapy. It is much better to decrease or better yet eliminate the Sinemet and use Mirapex instead.

Sent: Thursday, January 06, 2000 10:58 AM
Subject: RLS and Sinemet

I recently was diagnosed with RLS. I have been complaining about this jittering, unnerving sensation in my legs for 19 years to doctor after doctor.  All of which until now looked at me as though I was completely nuts. Basically I had resolved myself to believing it was all in my head, only I knew it could not be so as I remember clearly when I did not have this terrible affliction.

There have been evenings when I thought I wanted to just die so I would not have to ever suffer another episode. I have had to beg my husband to massage legs for most nights. I get up and jump on them there have been times when I would have liked to have cut off my calves to stop this horrible unnerving sensation in my lower legs.

The same doctor that diagnosed me also missed it three weeks ago when I told him about it. It has prescribed to me Sinemet, but after reading all the side effects and the possible risk of augmentation there is NO WAY I will even consider this medication to be suitable or an alternative to treating my condition.

I have very frustrated with the Medical field today as it seems as though there is extreme fear to give any medications that have been known to be used on the streets. I am not sure if this is a Government control fear, a stigma fear, pure concern or a phobia that has been formed since so many Americans do seem to have addictive personalities. All I know is that physicians today seem to prefer for persons to be in pain and suffering rather than prescribe and medication that can be habit forming. I know that I am a very high strung, hyper individual and a medicine like Xanax would probably do me more good than any harm. Everyone that knows me tells me I need to be on tranquilizers of some kind to tone down my hyper, over sensitive tendencies.

At any rate I will go to Whole Foods and get Kava Kava and valerian, before I will ever consider a medicine like Sinemet, which in the long run only worsened my Grandmother's Parkinson's disease. Also of all the medicines used for RLS, which ones are the cheapest if one had no insurance and suddenly had very little income or money for medications. The last thing I want is to start taking an expensive medication I could in no way afford without a job and insurance.

By the way I do have epilepsy and prior to be pregnant with my daughter I was given with very high success 5 mg valium. Why could I just not use this as a dual purpose? Of course these are things to ask my doctor, but I do feel a bit uncomfortable questioning his professional decisions.

Thanks in advance for any advice and assistance you can give me with this.

Kind regards,
Gwen W.

Medical Reply

The best treatment for your RLS is Mirapex (or Requip). It is not addictive and is the most effective medication to take care of the RLS symptoms. It is much better and safer to use than Sinemet. Unfortunately, it is reasonably expensive and no generic is available as it is a fairly new medication. The reason that doctors do not like to use addictive drugs is that with the addiction comes tolerance. Once you get tolerant to the drug, you need higher and higher doses, until even the highest doses have only a limited effect.

Xanax would be a reasonable drug to use at bedtime to treat your RLS so that you can sleep. It is better than Valium (it is in the same benzodiazepine family) and just as inexpensive as it comes in a generic formulation. To avoid getting addicted/tolerant to this medication, take the lowest dose that does the trick, and take regular drug holidays of at least 2 days of the drug every 2 weeks.

Sent: Thursday, January 06, 2000 4:45 PM
Subject: RLS/PLMD Question

I was recently diagnosed as having Nocturnal Myoclonous (Periodic Leg Movement Disorder). My doctor also referred to it as Restless Leg Syndrome. However I see in the RLS Support Group web site that RLS and PLMD are related, but different. Much more was said in the web site about RLS. Is the RLS information equally applicable to PLMD, or is there more information to look for?

Thanks!
Peter J. L.

Medical Reply

All the drugs listed on our site are primarily for use in RLS. PLMD only needs treatment if the leg (or other limb) jerks cause enough arousals during sleep that the patient is excessively sleepy during the daytime due to lack of good quality sleep (this can usually only be determined by a sleep study).

If PLMD alone needs to be treated (no associated RLS), then the drug of first choice is one of the Parkinson's disease drugs (Sinemet, Mirapex, Requip, Permax, etc.) which actually abolish the PLMD (leg jerks). Sedatives (such as Xanax, Halcion, Dalmane and other sleeping pills) sometimes decrease the amount of PLMD, but are more effective at decreasing the arousals from the PLMD (thus improving the quality of sleep).

None of the other classes of medications on our site are as good for PLMD as they are for RLS.

A Reply from Peter

Sent: Friday, January 07, 2000 6:49 AM
Subject: RE: RLS/PLMD Question

Thank you for the clarification. The Sleep Study I had indicated my "leg movement index" at 25, where the benchmark is 5, indicating the need for treatment as this is a possible contributor to the "almost no stage 3 or stage 4 sleep" finding. I also have fibromyalgia, so the sleep stages problem was not a surprise. The PLMD was a surprise.

Have you ever heard of PLMD being helped by a CPAP machine? The sleep study also recommended that I try CPAP because I have "mild sleep apnea" (no drop in oxygen level, just very slow breathing). I was wondering if this machine might also help with the PLMD problem.

Thanks again!
Peter J. Lee

Medical Reply

The leg movement index (amount of leg movements per hour) only indicate how many leg jerks are occurring on the average. An index of 25 is a moderate amount of leg jerks, but that is really not the important number. The important parameter to measure is how many arousals are caused by the leg jerks. This is measured by the PLMD arousal index. It does not make a difference if you have lots of PLMD, as long as they do not cause arousals.

PLMD has nothing to do with sleep apnea or CPAP. The arousals caused by sleep apnea are additive to the arousals caused by PLMD, but otherwise they have nothing in common.

DISCLAIMER

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.

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