Patient letters on RLS symptoms and remedies- Page 43


Kicking RLS/PLMD Patient

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



Sent: Saturday, September 07, 2002 12:04 AM
Subject: RLS

I have had RLS since the age of 6.  After many misdiagnosis over the  years I had the great advantage of getting a job in a sleep lab as a  technician.  I soon realized from my patients and delving into information on  the subject that I indeed had been suffering from severe RLS most of my life.        

I have been treated fairly successfully for the last 4 years on a  combination of Mirapex and Ativan.  Currently I am on 1.25 mg of Mirapex and  4 mg. of Ativan which is all taken at bedtime.  I have no insomnia from the  Mirapex but I did develop severe dry eye syndrome.        

Recently I am having much more problems with the RLS.  Symptoms are  constant all day, sleep deprivation has returned and also experiencing lower  leg cramps, something I never had before.  My primary physician says I cannot  increase the Ativan and my sleep specialist says I can increase my Mirapex to  1.50 but no higher than that.        

I am wondering what route would be best to try next as far as  medication.  I am leery of Requip as my stepfather is on it for Parkinson's  and he has very bad hallucinations with it.  Is there any medication that  would work without further drying out of my eyes?  Would increasing the  Mirapex up more continue to cause more problems with the eyes?        

I am 44 years old and I know the RLS will worsen with age.  I am  worried about continuing to keep it in control.        

Thank you for any suggestions.  
KM,  Arizona

Medical Reply

The dose of Ativan that you are taking is very high and it is likely that you are getting tolerant to the dose.  Once your RLS is under control, you may want to consider tapering off of the drug and using Ambien on a as needed basis only. You are getting to a high dose of Mirapex and sometimes a change to Requip might be helpful (you need double the dose of Requip in mg compared to Mirapex).  If that does not work then adding a pain killer (a narcotic or Ultram, or even alternating the two) can be very effective and safe if done correctly.

Sent: Saturday, September 07, 2002 2:02 PM
Subject: Restless legs

You gave me some advise a few years ago regarding RLS.  I have a bad affliction of this malady and it is in my arms now.  I have been taking Mirapex for several years and it was doing good but now I have many nights that I hardly sleep and some nights not at all.  I have been taking one pill at 5 p.m.; one at 8 p.m. and 2 at 10 p.m. They are 0.125 mg.  I wanted to try Requip but my doctor didn't want to prescribe it for me (He doesn't seem to know too much about RLS).  I have taken Sinemet and Permax in the past.
Any suggestions?  Thanks for your help in this matter.
Evelyn K.

Medical Reply

Speak to your doctor about increasing your Mirapex dose.  It sounds as if your RLS is getting worse with time (which is quite usual) and this is generally improved by increasing the Mirapex (in your case an increase in each dose to 11/2 or 2 tablets will likely help).  Until the higher doses of Mirapex do not work, there is no reason to change to Requip.

Sent: Saturday, September 07, 2002 6:11 PM
Subject: Codeine and RLS  

I have taken Sinemet and am not impressed.  It helps sometimes and sometimes  not.  A few weeks ago, I had a nagging cough and my doctor prescribed a  cough medicine with codeine.  After taking the cough medicine about a week I  noticed I didn't have the RLS and when I stopped it came back.  Is codeine  good to take indefinitely?

Medical Reply

Narcotics help RLS in almost all RLS sufferers.  It is an addictive drug so we prescribe it only when the other drugs do not help.  My suggestion would be to have your doctor prescribe Mirapex or Requip (increase to the lowest dose that eliminates your RLS problems). 

If you are still having problems with your RLS, then adding a narcotic would be appropriate. Codeine (Vicodin is better) can be used and alternated with the non-narcotic pain killer Ultram.
Sent: Sunday, September 08, 2002 7:10 PM
Subject: Mirapex & Weight Gain

I have been on Mirapex for just over a year. It's great!  But, I've also  gained thirty pounds I can't seem to get off.  Has anyone else had problems  with weight gain and Mirapex?  I am also hypothyroid and take Synthroid.

Thank you,
Kenna H.

Medical Reply

Weight gain has been seen very occasionally with Mirapex.  If increased exercise (which should be possible with you sleeping better) and decreased food intake does not help, then a change to Requip possibly might help.
Sent: Monday, September 09, 2002 4:38 PM
Subject: Drug Holiday
The time is approaching when I need a drug holiday from 1 MG of Mirapex and 400 MG of Neurontin...daily;  I am only sleeping 4 or 5 hrs per night. \
My holiday plan is to take Ambien and Requip.  I need advice as to how much I should take of these two drugs.  . and for how long I should take a holiday before return to Mirapex and Neurontin.  Appreciate your ans. to this question.  Thank you kindly,
Bon Slade

Medical Reply

No drug holiday is necessary from Mirapex or Neurontin.  If you feel that the Mirapex is not working well, then a change to Requip is occasionally helpful.  The dose of Requip is double that of Mirapex .125 mg = Requip .25 mg).

Sent: Monday, September 09, 2002 9:22 PM
Subject: Nicotine and RLS

I was wondering if nicotine had any effects similar to alcohol or caffeine.  The other obvious health aspects aside,  does a cigar after dinner exacerbate RLS symptoms? 


Medical Reply

This is a very individual response that varies from patient to patient.

Sent: Monday, September 09, 2002 10:51 PM
Subject: Questions about RLS and its cause

I have never communicated prior about RLS to other than medical doctors.  However, doctors from local to the National Health Institute in Bethesda have not been responsive to the following questions:

1.  Have any RLS individuals expressed a strong desire to eat when bothered by pain during the night?
2.  Is there data which represent categorical areas such as morose feelings, weight gain or loss, divorce, other blood related family RLS members, etc.?
3.  Has any person tried, suggested, written on marijuana as a reduction of nighttime pain?
4.  Have MRI's and X-Rays (spinal chord) been done or used in the study of RLS?

Thank you for any assistance and answers you may be able to provide.

Jim L.

Medical Reply

1) Many RLS sufferers have gained weight as the RLS keeps them up at night and eating is one of the few activities available.
2) RLS is a genetic disease in most (at least 60%).  There are no other correlations as you have asked.
3) Marijuana seems to work very well for RLS discomfort but is of course illegal.
4) MRI's, PET scans and other diagnostic imaging have been used to asses RLS patients with conflicting results which have not really yielded any information about the origins of the disorder.

Sent: Wednesday, September 11, 2002 9:29 PM
Subject: Drug Holiday  

First of all, thank you for maintaining this web site.  For years I had  "jumpy joints" without knowing what it was.  It can drive a person  crazy!  Your site has helped me in two ways.  First, it proves that RLS  is real and that many people have it, many worse than me,  Second, it  shows that RLS can be treated. 

Given other people's experiences I  believe my case of RLS to be moderate - not severe, but not mild.  I have had RLS since my teen years.  My mother, who also has it, calls  it "jumpy joints."  To get to sleep, usually I can contort myself in  such a way that enough relief comes to get to sleep.  

Additionally, I have Acid Reflux and have worked with doctors about  thirteen years to solve the problem.  I've tried lifestyle changes,  numerous drugs, and even the Nissen surgery.  While experiencing  some improvement, I have found nothing to solve the problem like  GRAVITY.  Sleeping sitting up or at an angle is the only real cure. 

The  problem is that when sleeping sitting up or at an angle, I cannot get  into a position to relieve my RLS.  After some experimentation with Ultram, I have found it to be a great  cure.  It relieves the RLS enough to sleep sitting up.  Some nights the RLS is completely gone!  I have been taking 100 mg an hour or so before  bed.  

My question has to do with drug holidays.  How long do they need to be?  You say two days.  Is that 48 hours or skip two nights?  I have been  going 5 nights on, two nights off.  Quite honestly, since starting this, the RLS seems worse than ever during the drug holidays.  I sleep, but  fitfully, waking often, and worse, my stomach hurts greatly. 

I am 37,  male and have a fast metabolism.   Thank you so much for what you are doing.  It is a real service to many people.  God bless you!

Medical Reply

Ultram is a very good RLS medication for many patients.  Drug holidays with this drug (or any drug for that matter) are not well defined.  I generally suggest 2 consecutive days off (usually the weekend as not sleeping as well on your own time is not as bad for most). 

Other strategies include alternating Ultram with a narcotic (which can be done every few days or weeks). Another better idea is to try Mirapex or Requip which would eliminate the need for Ultram or narcotics and avoid the need for drug holidays.

Sent: Friday, September 13, 2002 10:57 PM
Subject: Equivalent Ratio: Requip/Mirapex

I have PLMD without RLS, have been taking Mirapex for several years, and began to suspect that I might be one of those individuals who can develop augmentation with Mirapex.  I decided to switch to Requip and asked how much I should take to get equal results.  The guidance I got was to take 2X-3X that which I had been taking with Mirapex, which would have been 1.0 mg-1.5 mg, taken 2-3 hrs before bedtime, plus half that amount mid morning and again mid afternoon if I had my jerks while at rest. 

To make a long story short, I tried 2X for 3 nights, then 3X for 3 more nights, then 4X (2mg) for 2 more nights before giving up.  During none of those 8 nights did I get more than 3 hrs sleep!  Now I have read in your Treatment Page that one can titrate up to 3mg, 3 times a day AND even up to a total of 24mg per day!  At the most I had taken 2+1+1= 4mg total, MUCH less than what you state. 

QUESTION:  At some future time I want to try Requip again and I am frightened to go too far without your advice. Forget about 4X !! Where should I start and what would you feel would be enough without going too far?  The advice I had this time came from qualified medical personnel, which must go to prove that there is too little known about the Mirapex/Requip relationship.

Let me add that, since I have gone back to my 0.5 mg at night, I have gotten almost complete relief from PLMD, with no problems during the day and very little at night.  Apparently my trial paid off -- I had indeed experienced augmentation with Mirapex, and a drug holiday paid off!  That in itself is worth knowing.

Newt H,
in Oregon

Medical Reply

For most RLS/PLMD sufferers, Requip .25 mg will work the same as Mirapex .125 mg.  If you need to use much more than this 2 to 1 ratio of the drugs, then it is likely that Requip is not the right drug for you.
I do have patients who get tolerance to Mirapex or Requip (or both) and then alternating drugs/drug holidays will sometimes be an effective tool to return potency to the drug.

Sent: Saturday, September 14, 2002 10:54 AM
generic medications

I am writing of my experience this past week in hopes that it will help someone else. I have been taking Dilaudid successfully for over a year for my severe Restless Legs Syndrome.  I have taken the regular Dilaudid as well as two different generic brands in the past.  Last week the pharmacy gave me a third generic brand.  It did not work at all. 

I tried alternating with a few tablets of regular Dilaudid that I had left until it became obvious that THIS generic was useless.  Either I have forgotten how bad my RLS was or it has since gotten much worse because I had two nights of pure torture.... and finally just lost it for several hours.

So, be careful with generics!

My other real problem was that the pharmacies apparently cannot take back ANY medications - at least not in this state.  So, seeing as I was on a controlled substance, and they would not take it back, I obviously could not trade in my pills.  It took two days, eventually contacting two different doctors, in two states, before a solution was finally worked out.  I took the pills to my family doctor and he gave me a new prescription that said "no substitution".

Now my question is:  Seeing as I have taken other generics of this drug without problems, is it me that the drug doesn't agree with or is there something wrong with that form of the medication?  Seeing as the pharmacy will take NOTHING back - how do the drug companies ever find out that they are manufacturing a mistake?  Obviously, the drug companies and pharmacies do not have to PAY for the mistakes when they occur - the patient has to pay to replace the pills.  Where is the quality control?


Medical Reply

No medication, once dispensed can be taken back anywhere in the USA due to tampering laws (this medication can only be discarded once it gets out of the hand of the pharmacist).
Generic medication by law must be equal to the original medication.  I have heard from many patients that different generic drugs (and there does not appear to be a pattern to this) do not seem as potent as the trade name drugs.  I have no explanation for this but it certainly does happen.
The recourse that you have is to report the problem to the FDA who can then investigate the problem.  You might also want to inform the generic drug company who may consider reimbursing you for medication.

Sent: Monday, September 16, 2002 11:01 AM
Subject: RLS Treatment

I am 59  and have had RLS for over twenty five years. I started taking medication for RLS about 12 years ago. I started with Sinemet which worked wonderfully at first but I than suffered from augmentation.
My doctor then switched me to Permax which I stayed on for years but began to build up a resistance to Permax. At one point I took 1-2 Sinemet CR (left over) with the Permax and that seemed to work well at bedtime. I ran out of Sinemet and my doctor would not prescribe both Permax and Sinemet.
He switched me to Mirapex about 3 years ago. I now take three .25MG pills per day (sometimes 4). I was taking 1.5 Pills about 2 hours before bedtime, 1 pill at bedtime and 1/2 a pill if I couldn't fall asleep. This worked for the first 1 1/2 years but does not seem to be working any more. I have tried taking 1.5 pills earlier in the evening and 1 pill about 1 hour before bedtime and 1/2 pill at bedtime. I go to bed at 11:00PM and typically cannot fall asleep, because of RLS, before 2:00AM. My RLS is also starting to kick in during the evening where in the past it only affected me at bedtime. The 1.5 pills I now take during the evening does not seem to help.
I am wondering what I should try next. Should I increase the dosage of Mirapex, should I add another drug like Sinemet, Ambien or Xanax or should I switch to Requip. Any help or advice would be appreciated. My doctor is great but does not has much experience with RLS. He always listens to my suggestions for treatment which I typically get from your website.
Thank you,
Bob S.

Medical Reply

There is no one answer for your problem.  You may be getting tolerance and augmentation from Mirapex or your RLS may be naturally getting worse (I suspect the former).  Treatment plans would include a switch to Requip which may help for several months (in which case often switching back to Mirapex may even help) or may help you indefinitely.
If that does not work, then adding Neurontin or a pain killer (a narcotic or Ultram) may be very helpful.  Ambien can be used as needed in addition.

Sent: Monday, September 16, 2002 7:58 PM
Subject: RLS Treatment

I have decided to keep this support memo short and to the point.  I have been taking MIRAPEX for 3 years now for RLS.  When my legs begin their aggravating symptoms, I immediately take MIRAPEX (start low and work up to what you  need - it shouldn't take much).  My understanding is that MIRAPEX is used by Parkinson's patients - which intimidated me at first. 

Then I realized a lot of medicines eventually are found to help many different ailments.  You need a prescription to get Mirapex, but if you want to sleep tonight - all night - then PLEASE try this medicine.

Carla J.  

Sent: Friday, September 20, 2002 8:46 AM
Subject: RLS and car travel
I have RLS and PLMD. I take Sinemet every 12  hours. I get 6 hours of sleep and become slightly restless 7 hours  after taking my bedtime dose, but can usually lull myself into a half sleep for the next 2-3 hours. my morning dose works into the early evening hours, then wears off. my question is about car travel. we will be traveling 12 hours by car on vacation each way. 

Is there any treatment. or anything I can  do or add to my Sinemet treatment to make this trip bearable?

Medical Reply

You are likely starting to have augmentation and rebound from the Sinemet and should consider changing to Mirapex or Requip. You can take daytime doses of these medications to relieve any RLS that may occur between doses, if necessary.

Sent: Tuesday, September 24, 2002 9:34 AM
Subject: RLS
I have been suffering from RLS for at least 50 years and Mirapex has been helping for about 3 years or so. I take .05 mgs. but it is not efficient lately so plan to ask my doctor to 'up my dosage'. He does not know anything about RLS other than what I have tried to explain to him. I am 84yrs. old, belong to an HMO so don't have the freedom to look for doctors that could be more helpful.

My husband and I have a very tranquil lifestyle and I have found when that becomes disrupted ... such as stress due to too much company, perhaps a disagreement with someone etc. my RLS is worse. Do you think emotions can 'trigger' the problem? I attended a RLS support group in Portland, Oregon for awhile but don't feel comfortable driving in heavy traffic any longer so had to give that up.

Thank you,
Marilyn W.

Medical Reply

Check with your doctor about increasing your dose.  Most RLS patients need between .25 mg and .75 mg per day, but some need significantly more than that.  The dose should be adjusted so that you find the lowest dose that relieves all of your RLS symptoms.  If your own doctor cannot take care of your RLS, you still have the right to see a specialist who will (even in an HMO, you just need to demand to see one if they refuse).
Emotions or other stresses can easily worsen RLS.
Sent: Tuesday, September 24, 2002 10:49 AM
Subject: Sinemet causing trouble with RLS

Its a relief to read all those letters on RLS and realize that more people have this syndrome.

I'm being treated with Sinemet for the last 2 years now and doing great. It took a long time before getting treatments because I was afraid to tell my doctor about my symptoms thinking they would think I was crazy...I'm 41 yrs old and had RLS now for at least 10 years. But the last 2 years before taking Sinemet was hell on earth. In the evenings after sitting for an hour of so, the legs jerking and twitching started and had to move and walk to relieve the creepy crawling sensations in my legs.

I could never watch a movie, or sit long enough with company .I would dread visiting in the evenings. Did anybody ever watched television walking around the living room....And sleeping was next to impossible, I would fall asleep and wake up after only an hour of rest and pace the hallway (and even thinking of going outside for a walk) for the rest of the night... I would only get 2 to 3 hours of sleep every night....

I'm glad to have found your web site . I have a daughter that I'm sure will probably inherit RLS. But at least now we have some  help and it is recognized.  It brought tears to my eyes just reading the letters. I could relate so well to all those people. My dad has RLS and he is being treated also.

I'm happy to sleep and to enjoy life once more...

Just hoping that the medication I'm taking will continue to have the same effect.


Medical Reply

Sinemet is alright as long as you do not exceed 2 tablets per day of the 25/100 dose.  Augmentation and rebound will then likely occur (in over 85% of RLS sufferers).  You may want to discuss changing to Mirapex or Requip which work better than Sinemet and do not share this unwanted side effect.

Sent: Wednesday, September 25, 2002 7:38 PM
Subject: Mirapex and gastritis

I have been taking .5mg Mirapex for the past year with good results for RLS. but it has been giving me gastritis all during that time. I am now taking Prevacid and it is helping. Is this a common problem with Mirapex?  Will I probably need to continue the Prevacid while I am taking Mirapex or might the problem go away?

It is very discouraging to have this and also the Mirapex makes my muscles ache sometimes. I am exercising, taking Tums and Prevacid. then when I stop Mirapex for a few days I feel twenty years younger.  But I suffer for it at night.  Someone also suggested in the RLS support group at that Prevacid can cause RLS or make it worse. Is this true?  

D. Thomas, age 51

Medical Reply

To the best of my knowledge, Prevacid does not cause any RLS problems.  If Mirapex is causing you problems, discuss changing to Requip to see if this similar to Mirapex drug does not share the same side effects (you have a good chance of doing well with this drug despite your experience with Mirapex).

Sent: Friday, September 27, 2002 2:54 PM
Subject: RLS

I'm a 37 year old female who has been struggling with RLS since childhood.  Although it seems to be getting worse with age.  I've never been formally diagnosed, but I know I have it. (How couldn't you?)  I also have MS.  I wondered whether the neurological mess that I am contributes to RLS. 

In any case, I have to get up and walk around my house.  It's the only thing that works.  Shaking my legs, tensing the muscles, both are pretty much a waste of time and energy.  I recently started taking B complex, vitamin E and soy with calcium.  I'm thinking about trying valerian,  Does anyone have anything good to say about it? 

Thanks for being here.  I was beginning to think I was absolutely wacky.


Medical Reply

There is no known link between MS (or any other neurological disease) and RLS.  Valerian root has helped a rare RLS patient (placebo effect or real??), but there is no evidence that it has any role in RLS.

Sent: Friday, September 27, 2002 4:06 PM

I was taking Sinemet for RLS. I stopped taking it when I became pregnant. I am now breast feeding. I have had very little sleep and I work full time. I am concerned about being sleepy while driving and at work. Is it safe to take anything while I breastfeed. I would like to wean my baby but he takes very little formula from a bottle and is in 5th percentile for weight and 95th for height.

I take iron and am not anemic. I don't really kick much but I twitch and just can not make to that deep sleep. I sleep for maybe 20 min at a time. The rest of the night I just lay there and rest


Medical Reply

There is nothing that is considered safe for breastfeeding that works well for RLS.  You can check with your child's pediatrician about Mirapex, Requip, etc., but the odds are that they will know very little about the medication or will sanction using it during breastfeeding.

Sent: Friday, September 27, 2002 7:31 PM
Subject: RLS & Sleep Apnea

 I am a 45 year old female with a family history of  RLS.  I have suffered from this for as long as I can  remember.  When I was young it would occur from time  to time, but now that I am older it plagues me every  night and some times during the day.  I have asked doctors about this problem at different  times and have been looked at like I was not all  there, been put on Quinine and Klonopin?).

A few years back my husband started complaining about  my snoring. He has been very patient about my RLS.  The snoring has been getting worse and both of us have  been suffering from lack of sleep now.  At a doctor's visit for my yearly examine I told the  doc. just how exhausted I have been. (I did not  complain to him about my RLS as he was the one who put  me on Quinine.).  He sent me to a sleep disorder clinic and I had a  sleep study done in August 2002.  

My initial visit was in July 2002 and the doctor confirmed my RLS, and put me on Mirapex?) 0.25 mg. What a miracle!  It lasted for a month and then I had  symptoms again.  He increased my dose to .5 mg before  bedtime and so far so good.  My sleep study in August 2002 confirmed the RLS but I  also have moderate sleep apnea and am awaiting another  sleep study to see if a CPAP machine will help.  Also had a Ferritin test and my Iron was at 30 and  the doctor said it should be at least 50.

I am on Iron now and will be tested again in  6 months.  Please excuse my spelling of the drugs and the test.  Is it common to have more than one sleep disorder?  Also do you know from experience if I will have to  increase my Mirapex again?  

Thanks for your help,  
Lynn, Arab, AL.

Medical Reply

Both sleep apnea and RLS are common enough disorders so it is not too uncommon for them to overlap in the same patient.  I have many patients with both disorders at the same time. Tolerance to Mirapex does occur, in which case increasing the dose usually does the trick.  If however, you need to keep increasing the dose at short intervals, then a change to Requip or other class of RLS drug may be necessary.

Sent: Saturday, September 28, 2002 12:44 AM
Subject: RLS

I was just recently diagnosed with RLS.  I have been disabled for three years from Degenerative Disk Disease,  Arthritis ( of the spine ), and also stenosis.  I am 52 years old.  I  had pain in the right leg, down the thigh following along the path of  the femoral nerve.  I would, on and off, get those , what I call excited feelings ( or butterflies in my legs. )  The pain in the right leg is  from my spinal problems. 

About three months ago I started to get a lot  of pain in the left leg from the knee to my toes.  This is a burning sort  of pain.  I am on several medications for my back pain, muscle relaxers,  Percocet, Elavil, to name a few.  The Percocet helped some, but didn't  relieve it for long.  The pain and excited feeling wake me a lot at night. 

My neurologist has put me on Mirapex.  I am starting to get  relief.  I may have to go up with the dosage a bit, per doctor's orders  From articles I have read, RLS can be caused by spinal problems  I too sometimes experience those same strange exciting feelings in my arms and  on my chest. I hope other people can find a good doctor to work with them,  and help them find medication that is right for them.  

Medical Reply

Trauma to the body (and especially the spine) can trigger or worsen RLS, but there is no known link between your spinal stenosis and RLS.  Mirapex does work very well for RLS and the dose should be titrated to the lowest dose that relieves all the RLS symptoms.

Sent: Saturday, September 28, 2002 4:29 AM
Subject: Mirapex side effects

Even after two years, Mirapex continues to be a Godsend.  After "tweaking" the dosage over this time period,  I now take .5 mg at 5:00 pm then another .25 mg when actually going to bed.  The results are that all my RLS symptoms are completely gone.  In fact, I find myself actually falling asleep on the couch while watching TV,  something I haven't done in decades.

However, it also appears that one of the known side effects has appeared as well.   If I do fall asleep somewhere other that bed,  I find that when I wake up and go to bed, I am nauseated.  And in rare occasions - like this morning - I am still slightly nauseated in the morning.  However, merely putting something in my stomach will cure my "morning sickness".

Being that this has now been fairly consistent at this new dosage level, I wanted to check with you and see if I should be concerned.   Certainly this is better than RLS symptoms, so I am definitely not complaining, but I do have a couple of questions.

1.  Based on everything I've read here,  it appears that a total of .75mg of Mirapex daily is not excessive by any means.  Is that correct?

2.  Is the nausea unusual at this dosage level?  Is it a concern?

3.  Should I just try taking my bedtime dose with something like 7-Up or Sprite?

As always, many thanks for a wonderful website and service.

Dave R.

Medical Reply

1)    The "average" dose for RLS is between .25 mg and .75 mg per day (2-6 of the .125 tablets per day).  However, severe RLS cases may go up to 3-6 mg per day, so your dose is considered a relatively low dose.
2)    Nausea is not a very common side effect with Mirapex but does happen.  If easily controlled, it should not be a significant problem.
3)    The Mirapex can be taken up to 2 hours before bed which may be a better time to take it with food or soda (to prevent gastric reflux while in bed).
If the side effects of Mirapex do become too troublesome then a change to Requip may be helpful.

Sent: Saturday, September 28, 2002 9:14 AM
Subject: RLS

 I think I have Restless Legs Syndrome, I get a sensation in my legs to move,  this usually happens late at night, but it has happened after a long walk  and while sitting down and watching a long movie at a theater.  When this  happens I have to get up and walk and stretch my legs. 

The symptoms did not  begin until I was in my mid-teens, I am 39 now.  My mother has the same  problem and my 19 year old daughter is starting to have the same sensations.  I live in Germany and the U.S. military have been prescribing Clonazepam, 1  mg. I have been taking this medication, usually two pills every night along  with a prescribed muscle relaxant. 

Does my symptoms sound like RLS and if  so do you think I am taking the right medications?  On the average I get  about 4 hours of sleep a night.  

Elaine M.

Medical Reply

Your description is very compatible with RLS.

Although Klonopin (clonazepam) is listed as one of the drugs of choice for RLS, it is one of my least favorite drugs.  It does work well initially for mild RLS, but it tends to cause daytime sleepiness in most patients and may end up causing tolerance and addiction. 

Your dose of Klonopin is already on the high side. Mirapex or Requip work much better and then you do not need a sedative pill (Klonopin) to put you to sleep.

Sent: Sunday, September 29, 2002 9:04 PM
Subject: My RLS will come and go..

A few things I have noticed is that while it will be gone for months, when a storm comes (or the barometer drops) my symptoms will come on. They don't seem to go away until more storms come. I live in Northern California an we only get about 10 inches of rain a year. I have noticed the symptoms are there when the barometer changes.

Two other observations I have found: If I go to sleep on an empty stomach I will sleep well. I got diarrhea one day so I didn't eat anything from 3:30 PM on. On a empty stomach, in the middle of an a two week bout of RLS, I slept like a baby.

Second, I have noticed that if I exercise in a specific way my RLS will be relieved. Walking or running won't work for me. Sports where I push off from the side with my legs tend to help more; basketball, tennis, racquetball, aerobics (especially the high impact) all seem to help. I will have less symptoms, they are still there, only more manageable.

Medical Reply

Many RLS sufferers have noted that the weather affects their symptoms. It is often hot weather, but some RLS patients find the winter worse. Food can also affect RLS and perhaps not eating just eliminates a particular food which affects your RLS.

RLS sufferers also have different activities such as stretching which help their symptoms. Light to moderate exercise usually helps, but vigorous exercise worsens RLS.

Sent: Sunday, September 29, 2002 10:24 PM
Subject: RLS medication while hospitalized

I'm having surgery for a meningioma in a week.  What should I do about the RLS medication I take?  I take 100mg of Ultram per day spread out over my RLS hours.  Should I alert my neurologist who takes care of my RLS to let the neurosurgeon know I might need Ultram while I'm in the hospital? 

I wonder if being on painkillers while I'm there will cancel out the need for the Ultram.  Guess we'll find out!  I'm just worried about a severe attack of RLS while I'm hospitalized and not being able to convince anyone that I need Ultram. 

What is your advice? 


Medical Reply

You should not have much problem as the narcotic pain killers given after surgery generally are as potent (or even more potent) as Ultram for RLS.  It should be no problem for them to substitute Ultram (if you ask them) for the narcotics (once you can take oral medication) for pain and RLS relief.
It might be a better idea to eventually change to Mirapex or Requip (unless you have had problems with these drugs in the past) to control your RLS rather than use Ultram or other pain killers.

Sent: Monday, September 30, 2002 8:03 PM
Subject: Soap for RLS

I know this sounds insane but I swear it works. I read an article in a magazine (can't remember which one) about RLS and this lady claimed that she placed a bar of hotel soap in her bed and did not experience any more painful symptoms. I questioned why she would ever put soap in bed with her, but knew I had to try it - nothing to lose. I have been "sleeping with soap" since the first of August. I have slept through the night ever since. I know people must think I am as crazy as I thought that woman in the article was, but I'm still willing to share this information. I hope this will also be effective for others.

Medical Reply

We have heard this before but can only say that the only benefit that we can see from sleeping with soap is that you will likely be more clean than other RLS sufferers.
Sent: Tuesday, October 01, 2002 7:45 AM
Subject: Requip

I have been taking Mirapex for RLS  .5mg  day taken before dinner and .5 mg taken at bedtime. It worked well for years but began losing its effectiveness recently. I recently switched to Requip and started taking the same dose as I was with Mirapex.

I have now increased my dose to .75 mg before dinner and at bedtime. So far it has not been working well. My legs bother me after dinner and throughout the night. Sometimes Requip seems to activate my RLS at other time it seems to have no effect. Should I increase my dosage and how high should I go?

Thank you for any advice you can provide,
Robert S.

Medical Reply

Generally, you need twice the dose of Requip (in mg) compared to Mirapex.  Therefore, the equivalent dose would be 1 mg of Requip to equal the effect of Mirapex.  It is possible that a slightly higher dose may actually be needed, but only trial and error can ascertain this.
If the dose of Requip exceeds about 1.5 to 2 mg without resolving your RLS problems then it is likely that this medication is not for you.

Sent: Wednesday, October 02, 2002 8:24 AM
Subject: ADHD/RLS

I thank you for the response you have recently given me on a couple of issues concerning my RLS. I do not mean to over utilize your assistance however I am on a journey to battle this illness and I do not want to leave any stone unturned.

My question has to do with RLS and ADHD, I believe I suffered from ADHD most of my life and some have mentioned that being treated for ADHD actually relieved some of their RLS symptoms.

Could you tell me which medications could be used to treat ADHD and if you have had any success in reducing rls symptoms after treating ADHD.

I currently take either Mirapex usually .5 mg. or Ultram 100mg.

I find the Ultram works wonders for helping me concentrate, I am becoming overwhelmed by even the most simple tasks. I am a pastor of a church and concentrating is a must for me.

Thanks for your help
Randy, 42, IL

Medical Reply

RLS experts feel that ADHD may be caused by RLS as RLS when active certainly makes it hard to concentrate or sit still.  Thus, treating the RLS problem may resolve the apparent ADHD.  It does not work the other way around.  In fact, the stimulant drugs used to treat ADHD will usually worsen the RLS symptoms.

Sent: Wednesday, October 02, 2002 3:26 PM
Subject: RLS, Mirapex, and sinus trouble link
I want to thank everyone associated with this website and RLS.  For those of us (most, I suspect) who face the disheartening and inevitable dismissal of the condition by local, uninformed Physicians, it is encouraging to be validated by others having this unfortunate malady and the physicians who have taken the time to understand and treat it. 
My restless leg syndrome accelerated about 5 years ago in earnest, although there are memories of it from early childhood.  Life-threatening digestive disorders requiring five major surgeries (last one 1.5 years ago: hopefully the last) and attendent hospital-administered drugs either helped develop it or masked it: I'm not sure of what to make of it.  I have been taking Mirapex (1.5 mg/day - tinkered with the dose but this is the minimum that does anything positive) for years to control this, and although it is very effective compared to nothing (life would be intolerable without), I certainly continue to suffer from at least moderate sleep deprivation.  My symptoms also include arm movement.  Also, most of the flying around involves the left leg and right arm, whatever that means.  An employment complication dictated from federal requirements prohibits my taking any narcotic or even potential mood-altering drug, so the choices are more limited than most. Three questions:
1.    Can anyone else link severe onset or change in their condition to trauma / surgery / narcotic drug regimens / intense life-saving antibiotic IV treatments?
2.     Like clockwork, the Mirapex causes fairly severe sinus congestion within 30 minutes of taking it.  Trying to trick this by taking it at different times doesn't fool it a bit.
3.    Any thoughts about switching off  of Mirapex or rotating with something else, given the drug class restrictions?  I'm not familiar with any of the other medications in this class like Requip.  I have tried Sinemet with little success. I have also briefly tried Neurontin, but can't see a lot of difference.   I also have Mysoline for "breakthrough" RLS if the Mirapex doesn't work, and this has been quite successful.  Is this a candidate for regular daily dosing?
Any thoughts would be appreciated.
Thanks again,
Randy M.

Medical Reply

1)    Most of this list has been associated with RLS.  Generally, trauma to the body (accidental or surgical, especially to the spine) will often trigger or worsen RLS.
2)    Nasal congestion has been a problem with dopamine agonists and can be a problem for some users of this class of drug.  It may not occur with Requip.
2)    Mysoline has not been studied for RLS (as has the other anti-seizure drug, Neurontin) but if it is working then there is no reason not to use it even more regularly for your RLS.  A change to Requip from Mirapex may also be helpful for some RLS sufferers.

Sent: Wednesday, October 02, 2002 3:49 PM
Subject: RLS and Motrin?

Yesterday, I was diagnosed with RLS.  Reading through your website, I see  that that is exactly what I have.  While I was sad to discover there is no  cure, it's better to know than to wonder for the rest of my life about what  is wrong with me.  It's been going on for 2 years. 

I had concluded that it  was an injury from running.  Apparently not.  My doctor prescribed Motrin for inflammation in fairly high doses (2400  mg/day) and Klonopin.  While I see that Klonopin is prescribed fairly  regularly for RLS, I have not seen any mention of treating inflammation with  Motrin. 

Is my doctor on the right track or might I be taking something that  won't provide any relief?  

Ensen M. from Rancho Palos Verdes, CA,
33 years old male.

Medical Reply

There is no role for Motrin (or any other anti-inflammatory medication) in the treatment of RLS.  This is not an inflammatory disease so this type of treatment can only cause trouble.

Klonopin is listed as one of the drugs of choice, but I rarely if ever use the drug for RLS.  It causes daytime sleepiness in a very high percentage of patients and addiction and tolerance occur in most with time.  I have many RLS patients who need to be tapered off this drug, which is a difficult and painful procedure.

Although RLS cannot be cured, in almost all cases it can be treated effectively with medications that should not cause you any trouble (although this sometimes takes a little trial and error as RLS patients can respond very differently to the vast array of good RLS drugs).

Sent: Saturday, October 05, 2002 5:13 AM

I have had RLS for many years but not as bad as some of my fellow sufferers describe.  I take Mirapex .25mg 3 or 4 times a day (my RLS starts about noon) but I have it at night also. When I am bothered at night I take a Sinemet 25-100 and it really works well.   

My main problem at present is that I am becoming very paranoid and am terribly depressed.  I am 77 years old.  I have tried Effexor twice but each time it made the RLS very bad at night.  I know you have repeatedly said antidepressants usually complicate RLS but I am wondering if there might be something that you know of that would help this and not worsen the RLS. 

I Would appreciate your comments. I read all of your E-Mail and recommend your website to everyone who has RLS problems. I do so commend you on what you are doing.

Bob T.

Medical Reply

The 3 antidepressants that theoretically are the best for RLS are Serzone, Wellbutrin and Remeron.  There is of course quite a bit of variation and there are many patients who do better with even the older ones that bother most RLS sufferers.  Often it takes trial and error to find the right one for you (that will help your depression and not worsen your RLS).

Sent: Wednesday, October 09, 2002 3:39 AM
Subject: Restless Leg Syndrome  

I feel I am having a mild case of RLS. Last year when I was pregnant my  situation was all the more worse. I have not referred to any doctor, but  have read a lot about it on the net. I am trying to find the root cause of  this problem, which I believe is basically due to wrong sitting posture.

I  often sit with thigh part of my legs tightly pressed on the chair with the  calf part of the leg folded (sometimes crossed which makes it even worse)  beneath the chair. It is a position which puts your leg into extreme tension  with less blood circulation.

Moreover I have an eight hour sitting job which  involves a lot of putting my mind. I am a software engineer.  I am totally against taking any kind of medication for  this ailment.  


Medical Reply

There is no known cause of RLS so far.  Sitting is one of the most common positions that worsens RLS, but so does lying down (this is most often worse than even sitting) which puts little or no pressure on the arteries or nerves in the legs. 

The problem seems to be more with immobility rather than pressure or tension on body parts (it can also occur in the arms). As long as you feel you are doing well then no medication is necessary, but if your symptoms do worsen to the point where you are miserable and can't function well, then please consider medication.

Sent: Thursday, October 10, 2002 5:36 PM
Subject: RLS

I absolutely can't believe others have the same thing.  About a year or so  I've had trouble sleeping, my legs feel like they're vibrating...I feel like  I'm plugged in.  It keeps me awake, but no jerking that I am aware of.  I  usually wait 3 or 4 nights before I take a sleep aid, but by then I'm  exhausted. 

Sometimes I feel a hot streak on the side of each foot, but other  than that, just the buzzing.  I'm in the armed forces, they did an MRI  looking for MS but found no scarring.  My blood tests are good, no vitamin  deficiencies.  Internal medicine had no idea what it was. 

My OB/GYN doctor  suggested RLS, and I will suggest it to my primary care manager.  Is there a  treatment that does not include drugs?  I don't want to take anything that  would affect my work performance.  Also, is this a disabling syndrome or just  a bother?  

 Cathi in NC

Medical Reply

RLS, when mild, may be just a nuisance causing only mild sleep problems.  If it worsens (which it often does as you get older), then medication may be necessary as it may prevent you from sitting and working even in the afternoon (or morning in very severe cases). 

The treatment should not cause any side effects if chosen and used carefully and virtually no RLS sufferer should end up disabled with modern therapy.

Sent: Friday, October 11, 2002 2:48 PM
Subject: RLS with PLMS

 I most definitely have RLS but think it may be an odd secondary condition to  my PLMS.  I was curious what you think (I am a 28-year-old male).  My PLMS comes about as a series of severe body-wide jerks.  My doctor says  they're hypnic jerks, though I never experience the falling/startled  sensation; just the jerk itself.  Also, the PLMS seems very closely tied to  sexual activity. 

I can go for a day without any RLS symptoms, climb into  bed with no symptoms, but if I have sex, I can 99% count on a bunch of  upcoming jerks.  This even seems to hold true if I have sex in the afternoon  (I may not notice RLS symptoms for the day prior or the rest of the day, but  there's a good chance the jerks will get me in the night).  And it is  guaranteed that a night of PLMS, even if I do end up getting several hours  of sleep, means I'll experience RLS the next day.  

I started getting the jerks a little over 2 years ago.  The actual "daytime"  RLS symptoms didn't start until close to a year later.  These symptoms are  all the common ones (ankle flexing, happen often after extremely rigorous  exercise, etc).  Is there any link to testosterone and RLS or PLMS?  What's your take on the  "hypnic jerks" -- do you think those are actually RLS as well, or do you  think my RLS is secondary to this condition?  

Thanks a bunch,

Medical Reply

RLS is not a secondary condition to PLMD.  They both may be caused by the same genetic disorder and have common nerve/metabolic or other links.  If you have RLS symptoms, then it is most likely that the jerks that you are experiencing are PLM's not hypnic jerks (as PLMD and RLS are linked as discussed above).

A Reply from Matt

Sent: Sunday, October 13, 2002 3:59 PM
Subject: Re: RLS with PLMS

Thanks for your reply; this helps & makes sense  One follow up question though. Have you ever heard of my issue with sex/libido/whatever affecting RLS?  I am still trying to determine  everything that positively & negatively affects me,

The question of sex  (i.e. having any at all, and/or when I have it) affecting my symptoms is  something I haven't seen anybody talk about anywhere else.  Like is it my  testosterone level?  Some other level that gets changed by the act?

Thanks again,

Medical Reply

Hormones can affect RLS (usually this is confined to women) but this is an extremely variable phenomenon.  Sometimes the change in hormones can help or worsen RLS. Sexual intercourse is often helpful (more so in women than in men) but the mechanism is unknown.  Only trial and error can tell you what makes your RLS better or worse.

Sent: Saturday, October 12, 2002 6:36 AM
Subject: Oxycodone

Next week I will visit my physician again.  I get leg movement relief  from the Mirapex and iron but I am still not sleeping very well.  I have been  trying 5mg of oxycodone at bedtime and then another when I awaken at 2:30 or  3 am. 

Two out of three nights it does not work the second time and taking  two at bedtime does not seem to lengthen the first sleep stretch either. Am I going to need to try another medication or does biofeedback  help sleep?


Medical Reply

If the Mirapex takes care of your RLS and PLMD then you should not be using the oxycodone just for sleep.  Oxycodone works well for RLS (and less so for PLMD) and should only be used for RLS if high doses of Mirapex are not helping.

 If you need additional help for insomnia not related to RLS or PLMD, then a sleeping pill such as Ambien would be helpful.  Biofeedback and other non-pharmacologic sleep aids are often of benefit.

Sent: Saturday, October 12, 2002 4:48 PM
Subject: restless leg syndrome
I've had RLS for about 10 years.  Taken every medication and tried every trick to sleep.  One morning I decided to go without any processed sugar at all to see what happened.  Guess what?  No more restless legs. 

Also, my overactive bladder is better, and an itchy spot on my leg is completely gone and it's been 2 1/2 weeks.  I pray it continues.



Medical Reply

Some RLS sufferers have done better by decreasing carbohydrates but only a very few seem to get benefit from this treatment.

Sent: Sunday, October 13, 2002 5:49 PM
Subject: RLS

I have had RLS for some years...recently I have started taking Mirtazapine for depression and find that RLS symptoms are severely increased about 1 hour after taking (30mg) mirtazapine. Any comments?


Medical Reply


Mirtazapine or Remeron is supposedly one of the better depression drugs for RLS patients, but unfortunately, all the antidepressant medications can worsen RLS.

Sent: Monday, October 14, 2002 2:58 PM
Subject: RLS
I am a 40 year old mother who is suffering from what I guess is RLS.  My doctor is doing blood test to see if I have a muscle disease.  I have severe aching and cramping legs and arms. My legs are severely restless mostly in the afternoons and nights.  They are beginning to bother me in the day too. 

I am afraid because my mother had Parkinson's disease and also a severe nervousness condition.  My doctor is trying me on Mirapex, but it makes me very drowsy the next morning. And I have 2 children that I have to send to school. 

I feel like running sometimes to get relief from this terrible feeling.  I've never suffered from anything like this before. If it gets any worse I don't know what I'll do.   Is there no relief  ever?  I don't like taking any medication of any kind. Just about everything I take makes me very drowsy to where I cannot function normally. 

Also I have trouble keeping my eyes open at times even though I'm not sleepy.  Is this related to  RLS?                                    

Thanks for this website, it has been very informative.

Medical Reply

Almost all RLS patients can be treated such that their RLS symptoms are taken care of and side effects are not a problem.   In difficult cases such as yours, it does take some expertise with the disorder and drugs, however.
The drowsiness may be from the medication or from PLMD that is often associated with RLS which causes poor quality sleep.  Also, if you are not sleeping well due to insomnia from your RLS being active while you are in bed, you will obviously be tired in the daytime.

Do not worry about the fact that your mother had Parkinson's disease as it has no relationship with RLS.  You will likely need medication of some type for your severe RLS.

Sent: Monday, October 14, 2002 10:45 PM
Subject: RLS
I, as others have had the heebie-jeebies as long as I can remember, I remember being so excited and in tears when I first heard there actually was a name for it while listening to the recordings about sleep disorders. I must have replayed it twenty times, as I could not believe it. I as others had a horrible time during my many pregnancies as doctors thought you were referring to leg cramps. I did take one Parkinson's disease medicine one night as my doctor gave me a script when I took in a little article from the paper (probably 15 years ago).
That kept me up all night with insomnia so I was surprised to know there are many more meds available today, but as it seems everyone is different and reacts differently. Do most people have these every night? I may go two to three weeks with none and then have it for days. I have never established a pattern and why they are so frequent at times and then go away for awhile.
I am 56 and now they are bad and I do believe they worsen with age . I have a stationary bicycle beside my bed and ride it as fast as I can until my calves are real achy and tired feeling, this usually is about a min. or two, jump back in bed, out of breath and usually I only have to do that once and I can go to sleep.
I do have it also a lot in my upper  right arm and that is easiest to get rid of by doing large circular movements one way and then the other for a minute or two. It also seems as if milk sometimes helps.
I am wandering if there is a correlation between RLS and auto-immune diseases, arthritis etc. I also wake up with both arms asleep almost every morning at times and can't remember now if this is when I am having the restless legs at night. If you take the meds you have been referring to are they taken even when you are not having episodes or do most have them every night?

Medical Reply

Most people who have significant RLS such as yours have the symptoms every day.  They may have days when the RLS is worse or better, but it rarely goes away completely.  It is still not clear why it varies, but hormones, foods, weather, etc.
The medications work much better if taken before (one to two hours before) RLS symptoms occur.  Therefore, it is better to take the medications on a regular basis.  In your case, where you may go several weeks without problems, the medications could be taken on an as needed basis, but it may require higher doses of the drugs.

There is no relationship between RLS and auto-immune diseases, or arthritis.

Sent: Wednesday, October 16, 2002 12:20 AM
Subject: RLS, Clonazepam, back surgery, liver cysts--help

I am a 37 yr. old female. I have had RLS for a long time now. I have tried many meds. Right now I take Clonazepam .5mg. I take 2 of them at bedtime. I started out about 2 years ago taking one and now I have increased to two per my doctor as the effect is lessoning. Now it has gone from just my legs to my left arm.

Today, I found out from my gastrointestinal doctor that cysts have shown up on my liver. This was a test done for stomach problems I've been having.

Is it possible that the clonazepam is causing me a liver problem or even the stomach problems as all his stomach tests have shown nothing wrong with my digestive system?  Also, the Clonazepam is becoming less effective. I am suffering from bad insomnia. Should I contact my doctor to increase the dose or should I ask him for a different medicine?

I had back surgery 10 weeks ago on my lower back due to a  disc pushing on a nerve causing me numbness in my left leg. Could this have anything to do with the RLS symptoms worsening? The stretching of my legs to relieve the RLS certainly isn't helping the recovery of my lower back surgery. The RLS symptoms are presently only on my left side (arm and leg). Does one thing have to do with the other?

Any suggestions for my questions?
Thank you,

Medical Reply

Clonazepam (Klonopin) is a drug that I personally do not like to prescribe for RLS.  As in your case, tolerance develops and higher doses are needed often leading to further tolerance and addiction.  Klonopin is not associated with liver problems (also, cysts in the liver are most often benign and not really considered "a liver problem").
RLS occurring in the arms implies that the RLS is getting worse.  Often, trauma (such as surgery) can trigger worsening RLS, especially when the trauma is directed at the spine (such as in your case).
There is likely no relationship between your numbness and RLS but that is an area that in really unknown, so I cannot say anything definitively.
My recommendation is to ask your doctor to treat you with Mirapex or Requip, both of which are much better RLS drugs and should relieve your RLS symptoms so that you do not need any sedative to help you sleep.  If you are to get off Klonopin, it should be done slowly to prevent withdrawal problem.

Sent: Wednesday, October 16, 2002 8:08 PM
Subject: (no subject)
I  have been very depressed with my RLS situation, and think maybe I ought to try an antidepressant.  I'm not sure whether the lack of sleep and constant  fatigue, plus stomach problems are causing my depression or whether the depression is causing my symptoms.  

I plan to see a psychiatrist.  However I understand  antidepressant medication makes RLS worse (heaven forbid!) . Have you found an antidepressant that is helpful to those of us who have Restless Leg Syndrome.  


Medical Reply

Wellbutrin, Serzone and Remeron theoretically are the best antidepressants as they affect the dopamine system the least.  It is however, a very individual response (some even get better with the "bad" antidepressants), so there are no guarantees that you will do well with the above medications.
More importantly, treating your RLS with effective (but safe) RLS medication should let you sleep normally, eliminate your fatigue and let you not have to worry about your RLS problems.  Virtually every RLS patient should get complete relief from their RLS symptoms with proper treatment.  With good RLS treatment, you may not need any antidepressant mediation.

Sent: Wednesday, October 16, 2002 11:22 PM
Subject: RLS and PLMD
My grandmother, mother, sister, uncle and I all have RLS.  My grandmother and I also have PLMD.  Until recently, I didn't see a physician about it as the treatments didn't seem all that effective for my family members.  I've had RLS symptoms since I was a teenager and PLMD symptoms for at least 12 years (am now in my early forties). 
I'm curious about other people's daytime symptoms.  In the past year, I have been very fatigued, unable to do many activities I have always done.  Sometimes I sleep as many as 11-13 hours, yet don't feel refreshed.  I often feel a heaviness or pressure in my head, sort of like the feelings of dehydration from a hangover and often feel "foggy."  When it is at its worst, I am unable to physically get out of my chair and do anything, although I have the desire to do them.  Usually these symptoms lessen throughout the day, so that by the time it comes to go to bed, I actually feel the best I've felt all day. 
Are these consistent with RLS and PLMD?  Or are these possible sign of a non-sleep problem?  I've had many tests run (thyroid, ferritin, B12, CBC, etc.) and according to them, I'm healthy and all values are perfectly within normal parameters.
I joined a clinical trial of a new drug in the same class as Sonata to see if that would help me get to sleep more easily.  Even on the nights where I do not have RLS symptoms, I often can't fall asleep until 2 or 3 AM.  It seems that the above symptoms are worse on the days after I take the drug.  I do fall asleep more easily, and tend to stay asleep longer periods (only waking and getting up 2-4 times instead of 5-15 times).  Is this common with drugs of this class?
I have a sleep study scheduled and see a neurologist after that.  I want to have as much info as possible so I can ask intelligent questions that allow me to get the more appropriate treatment.

Medical Reply

Without knowing exactly which drug you are taking for the trial, it would be impossible to say whether or not the side effects you are experiencing are from the drug.  One would expect if the drug were similar to Sonata (which may not always be the case even if the drug is in the same class), that there would be no next day side effects.
The fatigue and other daytime problems that you are experiencing are likely due to inadequate sleep time (from the RLS causing insomnia) and likely poor sleep quality (the PLMD can cause this, but a sleep study is necessary to see if you are having lots of sleep arousals from PLMD).

Sent: Saturday, October 19, 2002 10:43 AM
Subject: RLS & beta blockers

I have had RLS since teen years (am not 62)  and take Mirapex.  I have been taking Mirapex about 4 years.  After augmentation occurred with  Sinemet, was changed to Mirapex.  I am taking the beta blocker Toprol and my doctor has recently increased the Toprol from 1 morning to 1 morning and 1 at night. 

Since  increasing the Mirapex has not been helping the RLS, so for the past week I have not taken the Toprol at night and my legs have not 'hurt'.  Could the Toprol be keeping the Mirapex from doing its "job".


Medical Reply

To the best of my knowledge, Toprol or any other beta blocking drug should not interfere with Mirapex or affect RLS adversely.  There have been a few studies showing that beta blocking drugs may even be helpful for RLS.

However, if you have noticed a change in your RLS symptoms since increasing Toprol, then it is certainly possible that this drug may have an adverse affect on RLS in your case. With RLS there are often more exceptions rather than rules.

Sent: Sunday, October 20, 2002 8:00 AM
Subject: restess legs and hyperventilation?
Is it possible that RLS can lead to hyperventilation symptoms?  I am almost certain that it does, because I often wake up with a head that is not able to think clearly, to focus for a longer time and tingles and what is also very remarkable is that I want to breathe out all the time. I have been experiencing this since I have RLS and I find it very disturbing. During daytime these symptoms in my head do not disappear. At work this is very bothersome.

On the Internet I have only found one small article from a neurologist, who mentions this. Can you explain this? Just for the record: I am on Mirapex and Xanax.

Thank you very much,
Corrie A., The Netherlands

Medical Reply

RLS can only lead to hyperventilation if it causes anxiety.  hyperventilation is most commonly caused by anxiety and unless you are very stressed due to your RLS, there should be no relationship between RLS and hyperventilation.

Sent: Sunday, October 20, 2002 10:51 AM
Subject: methadone

I just started taking methadone for RLS after having no luck with Neurontin, Permax, Mirapex and Requip.  I'm being given 5 mg. per day.  What is the "average" dose found useful for RLS? and what time(s) are best to take it?  I want to keep the dose at the lowest amount possible to avoid excessive dependence and addiction.    

On the other hand, I want to give the methadone a good try before giving up on it, because there is really not much left for me to try after this.  What do you find is the maximum dose you recommend for RLS, and what's your experience with dependence and tolerance?  

Karen U.

Medical Reply

Methadone is reserved for severe RLS so there is no typical dose.  It takes about 1 hour or so to work, so it should be taken one hour before needed (such as one hour before going to bed or going to a movie, etc.).  For very severe RLS cases who wake up with severe RLS, it may need to be taken upon awakening and repeated every 6-10 hours after that.
The smallest dose is usually 5 mg one hour before bed and the highest dose that I have given is about 10 mg three times per day.  We always try to give the lowest dose that takes care of the RLS.

Sent: Sunday, October 20, 2002 10:27 PM
Subject: After effects of surgery
I've noticed that many times surgery is listed as something that can make RLS/PLMD worse.  It didn't matter to me until I was unfortunate enough to require surgery!  Two weeks ago I had a meningioma removed from the right cerebellum and everything went well.  But my RLS is acting up a bit.

What exactly do you think are the mechanics of why surgery makes RLS worsen?  Is it solely due to stress on the body?  Or maybe anesthesia?  How long before it calms down again? Thanks for your response.   


Medical Reply

We have no idea why trauma such as surgery may worsen or trigger RLS.  Unfortunately, once started, the RLS may continue indefinitely.

Sent: Monday, October 21, 2002 10:03 AM
Subject: RLS

Do you find that people with RLS are very sensitive to medications? For instance, I think I have a mild form of RLS because I get these symptoms occasionally, but I recently tried to take Pravachol to lower my cholesterol and it gave me terrible side effects.

Linda M.

Medical Reply

RLS patients are only sensitive to medications that affect RLS (such as antihistamines) but are otherwise no different from others with respect to medications.
Sent: Wednesday, October 23, 2002 4:36 AM
Subject: 4am. and heeeeere's Shirlee!

I have been reading with great interest, the RLS patient letters to you and I noticed the many similarities that seem to go hand in hand with this condition. As in my own case, my pregnancies brought about the first episodes and they disappeared when my children were born.

I really started having what I consider full blown episodes after having foot surgery that went terribly wrong. During surgery, my blood pressure dropped dangerously low and I was giving something to raise it back up which is turn filled my foot with blood. The pain was excruciating and I was put on morphing as nothing else gave me any relief. Since then I've had many bad nights.

A few months ago after not having any sleep for three  nights, I had my husband take me to ER. I was so depressed and tired I felt if I didn't get any relief I would lose my mind. Of course as far as my insurance was concerned, RLS was not  considered a reason for going to the ER.  I therefore had a $300+  bill to pay and they didn't help me either.

Having said all that, I guess my point is even though each case seems have differences, there are many similarities. Like surgeries, hormonal changes, stress. and of course the heredity thing. I have also been on Ultram for my arthritis, but never took it at night. There is a whole list of medications my doctor has ordered for me. Quinine for my nervous legs, Celebrex for my foot, Valium to calm me down There are many more meds sitting in my cupboard that I can't or won't take.

I'm going to call my doctor tomorrow and would really appreciated you giving me the right words to get his attention. Like what you think I should start out taking. I apologies for taking your time, but I'm sure needing your help right now!

Thanking you in advance,

Shirlee in Michigan

Medical Reply

Ask your doctor about going on Mirapex or Requip.  You may need some Ultram or a narcotic at bedtime in addition, but that depends on how well you do with Requip or Mirapex.  This should take care of your problem and avoid visits to the ER which as you noted are both expensive and useless.


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