Patient letters on RLS symptoms and remedies- Page 81

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

Sent: Tuesday, May 20, 2008 5:38 AM
Subject: RLS Following Surgery

My mother just developed sudden onset RLS 5 days after a full hip replacement done under spinal anesthesia. The RLS did not manifest until she had stopped taking OxyContin for pain for 3 days, followed by 2 days of hydrocodone.

Is sudden onset RLS associated with spinal anesthesia? If so, will it resolve in time? And could the narcotics have masked the RLS until she discontinued them?

What medication would be best for her – she is 80 years old, with high blood pressure, diabetes, thyroid issues and fibromyalgia, taking Diovan, Aldactizide, Calan SR, insulin, Synthroid and Prevacid on an on-going basis; Celebrex and Warfarin temporarily post-surgery.

None of your mother's medications have been associated with RLS.

RLS has not really been associated with spinal anesthesia but rather with trauma (such as surgery). Many patients notice a worsening after a surgical procedure. You are correct about the opioids masking the RLS until they were withdrawn.

If the RLS is a problem, she should consider taking Mirapex or Requip.

Sent: Sunday, May 18, 2008 10:06 AM
Subject: Concerning my RLS

I have severe RLS. I take Mirapex 1mg for relief. What I would like to know is RLS considered a disability? I sometimes have to take clonazepam 0.5 mg if I have a really bad attack. I also have back and neck injuries and disc degeneration and was wondering if that may have worsened the RLS.

My father also had RLS and all four of my children, now grown, have RLS to some degree.

Also I would like to know if RLS is a type of seizure disorder.

Deedra R.

Although the real cause of RLS is not known, it is definitely not a type of seizure disorder. However, RLS symptoms tend to worsen with spine/disc degeneration problems such as you have described.

Although RLS itself does not qualify anyone for disability, when it is severe enough to interfere with your ability to work, you may qualify for disability (however, this is a long and tough road to travel before actually obtaining disability).

Sent: Friday, May 23, 2008 4:31 PM
Subject: Stopping Mirapex?

Sir: Thank you so much for your never ending interest in RLS and answering all this e-mail. I have had RLS forever; been on Mirapex over 8- years. I take 1 MG twice a day. It is no longer helping - I suspect it is worsening the problem. Requip did nothing for me. My question is stopping Mirapex cold-turkey OK????

I am trying Neurontin 300 mg in a.m.; 300mg at night; and possibly 300 mg at noon. The only other medication I take is Nexium in the a.m. plus an occasional Extra Strength Tylenol. Once off Mirapex I can take methadone as needed. Is this a feasible plan to follow. I am 80 years young, sleep deprived and overweight.

Mirapex can be stopped suddenly, but there will be a short-lived (about 2 weeks) but dramatic increase in RLS symptoms. If you can take methadone for those exacerbated symptoms, then you should be fine. You may then need an opioid like methadone at a lower dose on a continuous basis.

Sent: Monday, May 26, 2008 7:59 PM
Subject: RLS medications?

I have been taking Lyrica 50 mg 3 times a day and in the evening about 6 PM I take a Vicodin 5 mg (sometimes more if daytime RLS is worse) and triazolam .25 mg for sleep. This is not working very well now. I am walking the floor most every night and not getting enough sleep.

About 7 or 8 years ago I took Mirapex and it worked for awhile. Do you think it would work again ? I am so tired all the time.

TW

You have two alternate choices if Mirapex or Requip do not help. You can increase the Lyrica (usually to a maximum of 150 twice daily) or increase your opioid (up to 3 times per day but changing to an more potent opioid like oxycodone or methadone that does not contain acetaminophen may be better).

Sent: Tuesday, May 27, 2008 3:51 PM
Subject: RLS worse after spine surgery?

I have always had a real difficult time sitting still. It's always been a joke for my family since I have been older as when I was younger I was tested multiple times for ADD but nobody concluded I had it. Without telling you my entire life story I'll get to the important part. About 2 Years ago I started having constant back pain. My doctor put me on Tramadol and I started physical therapy. That didn't work so I tried a nerve block and steroid epidural and neither of those worked either.

I then settled on fusion surgery and had that about 12 weeks ago. I took the Tramadol up until Surgery about 100mg a day. I then took Vicodin for 2 months after surgery, during my recovery. Since then I went back to the Tramadol because I am still having back pain which my doctor says I will likely have until I get deeper into physical therapy. I have started trying to stop taking the Tramadol and now I have what seems to be seems to be a severe case of RLS. The Tramadol helps but I would really not like to take this the rest of my life.

Am I having withdrawal symptoms from the pain medicine or running into RLS? I have read a lot of cases about RLS showing up more severely after back surgery. My family seems to think I am out of my mind or having withdrawal symptoms. I feel fine walking around and even most of the time sitting down. It's mostly when I lay down flat that I get these crazy restless legs that I cannot handle. Falling asleep is virtually impossible without the Tramadol and I am always tired day and night.

Jeff

As you have already noted, it is very common for patients to first notice RLS symptoms after surgery, especially spine surgery. We do not have any explanation for this phenomenon nor has it been verified by scientific studies.

However, it does sound like you have RLS and as such it should be treated with Mirapex or Requip. Ultram should be reserved for quick treatment for breakthrough RLS symptoms.

I have clinical depression and have been on over 14 anti-depressants and drug cocktails over 10 years. In that 10 years, the best I have ever felt was on 30 mg of Prozac, and .5-1.5 mg of Xanax for what I thought was the insomnia side effect from the Prozac.

I am just now understanding that my anti-depressant is aggravating or causing restless leg, which is not allowing me to sleep. I have been on every FDA approved sleep medications and they don't work for me, I wake up at 2 AM tossing and turning. It all makes sense now. The Xanax was helping my RLS. Of course the Xanax slowly lost it's effectiveness and my RLS-insomnia returned, which magnified depression. I have almost no RLS symptoms when I am off the anti-depressants.

Should I keep my Prozac, as this is the only one that works, and augment with Requip? I read about the Requip, and all I hear are problems with augmentation and reduced effectiveness over time. I am looking for a long term option as I will need to be on anti-depressants for the rest of my life.

Gary W.

Treating RLS with Xanax is similar to treating back pain that prevents you from sleeping with this drug. If the back pain is not that bad, then the Xanax should be sufficient to keep you asleep. However, as the back pain worsens (or you get tolerant to the effects of Xanax which typically happens with time) then your insomnia will not be taken care of by the Xanax.

If you have already tried Wellbutrin (the most RLS friendly antidepressant drug) and it has not helped your depression then you may be stuck with Prozac. Other alternatives include desipramine (an older antidepressant) or trazodone but they may not be as effective as Prozac.

If you do have to stay on Prozac, then Requip or Mirapex are good choices. You do hear a lot about the side effects. However, remember that the vast majority of patients (likely well over 80%) do not have trouble with these medications and do not write in to message boards, forums and websites like this one. You hear disproportionately much more from those who are having trouble or are dissatisfied with these dopamine agonists.

Sent: Monday, June 02, 2008 5:08 AM
Subject: Re: Prozac, RLS and Requip

I did start the Requip and after two days of .25, the restlessness and insomnia got worse. Is this a bad sign?

It is too early to say that. You may need a higher dose (as most do) before you can be sure that this drug is not for you. However, if the insomnia (one of the side effects of dopamine agonists as is sleepiness) persists, then you may want to try Mirapex.

Sent: Thursday, June 19, 2008 9:22 PM
Subject: How Long will I know how I am doing in Requip

I have been on Requip for 20 days, with a ramp up to 1mg. Since starting the drug, I have funny stiffness in my hands, weakness in my legs in the AM, nasal stuffiness and cough, and I still have some restlessness that is keeping me from sleep. Do I keep going at 1mg, or increase? Is 20 days long enough to know I cannot stand the side effects?

Gary W.

Some people need to go as high as 4 mg before achieving full relief of RLS symptoms. However, as side effects seem to be occurring, you may want to consider a change to Mirapex or other therapy. The therapeutic effect of any dose of Requip occurs within the first day or two. We increase slowly to minimize (adapt to) the side effects. It may take as long as a week (or two at the most) to decide if the side effects of any dose are transient or will persist for the long term.

Sent: Thursday, July 24, 2008 8:50 PM
Subject: Re: How Long will I know how I am doing in Requip

Hi, are there any known problems for men and delayed orgasm or reduced sexual urge or feeling with Requip, 2 mg/day?

That would be an unusual side effect for Requip but of course, anything is possible when taking a new drug.

Sent: Tuesday, June 03, 2008 6:57 AM
Subject: Can you get RLS in your arms?

I was recently diagnosed with Carpal Tunnel and I am treating very successfully with a Chiropractor. Everything is going great until several weeks ago when I started to get the “creepy crawlies” in my forearms at night, especially at bedtime.

I have had RLS in the past until I was able to associate it with drinking caffeine in the afternoons. Since I’ve stopped consuming caffeine after 1PM my leg RLS has stopped. (This includes chocolate and soda’s.)

So I know the symptoms of RLS and that is EXACTLY what I feel in my arms. I end up sitting watching TV and flexing my arms and wrists till I’m so tired that I fall asleep in the chair.

Yesterday my GP doctor gave me a sample of Mirapex to try, but he said he had never heard of getting the symptoms in ones arms before, and he’s not sure if the Mirapex will work, but it’s worth a try.

I just wandered if anyone else has had the arms affected before.

Bethany B.

RLS can affect other parts of the body but only after starting in the legs. Typically, the arms are the next site (after the legs) to be bothered by RLS. Your arm symptoms should get better when you move your arms or even when you walk.

In more severe cases, RLS can occur in virtually every other body part including torso, genitals, neck and face. It should respond to Mirapex.

Sent: Tuesday, June 03, 2008 7:58 AM
Subject: Help!

I have had RLS for many years (I am 76 years old) and have been on Sinemet, Permax and now the last years, I have been on Mirapex. I take 50 mg of Mirapex at 5 p.m., 1 mg at 8 p.m. and 1 mg at 10 p.m. plus a Vicodin at 10 p.m.

After I am asleep an hour or so, I wake up kicking and am awake for hours and have to get up and do something to keep my brain busy. My doctor doesn't want to put me on Requip or anything else as he thinks Mirapex is the best. What do you think? After taking Mirapex for many years, can one get used to it and it doesn't do any good any more? My legs are starting to bother me more during the day too. Any suggestions?

Frustrated and tired,
Evelyn K.

It sounds like you are experiencing augmentation from the Mirapex. This is a worsening of RLS (symptoms become more intense, do not respond to current doses of medication, occur earlier in the day and may extend to other body parts like the arms) due to taking the Mirapex.

Sometimes the augmentation may respond to increasing the dose of Mirapex. However, if this helps only temporarily and symptoms get worse after a few weeks or months, the Mirapex should be discontinued. This should be done very carefully as RLS symptoms will dramatically worsen for 1-2 weeks and need to be treated with higher doses of opioids (Vicodin or a more potent opioid).

After the 2 weeks off Mirapex you could try Requip (it is not better or worse than Mirapex) but there is a significant chance that augmentation may occur also with this dopamine agonist (augmentation generally occurs only with dopamine agonists like Mirapex and Requip). Other choices would include Neurontin or Lyrica or staying on a few doses of an opioid.

I then settled on fusion surgery and had that about 12 weeks ago. I took the Tramadol up until Surgery about 100mg a day. I then took vicodin for 2 months after surgery, during my recovery. Since then I went back to the Tramadol because I am still having back pain which my doctor says I will likely have until I get deeper into physical therapy. I have started trying to stop taking the Tramadol and now I have what seems to be seems to be a severe case of RLS. The Tramadol helps but I would really not like to take this the rest of my life.

Sent: Wednesday, June 04, 2008 1:17 AM
Subject: RLS

Three of my older children and myself suffer from this syndrome. I am a qualified Homeopath and to date have been unable to find a remedy for this problem. I personally have found it has increased in severity as I have progressed in years and is not only confined to my legs.

Heat, resting, sleeping are triggers and strong stretching temporarily relieves it. I never get it as a driver but will suffer as a passenger. Going to the movies is a nightmare. Valium has some effect but my G.P. refuses to give me a script.

Valium is not a great treatment for RLS, especially as it causes sedation and may interfere with activities such as driving (even if you fell that you are not being sedated).

Mirapex or Requip are the drugs of choice and should be tried first before considering other drugs.

Sent: Thursday, June 05, 2008 1:31 AM
Subject: RLS. Mirapex and head rushes?

I have been on Mirapex since Jan 2007 with increasing doses, currently .36 mg taken one hour before bed time. I have several side effects, reflux, insomnia and when I do wake up my mind is full of ideas racing round. I tend to wake at 12.30, 3 to 3.30 then regularly there after.

The other problem that started 12 months ago (three months after starting Mirapex) and was put down to a virus at the time is head rushes. This starts at the back right side of my head, runs into the top of the head and right ear. Usually associated with a headache above the right eye.

I saw a consultant neurologist for the first time last week and he is talking of adding to my prescription diazepam and Valium based drugs to help me sleep and stop the head rushes. He also wondered if this might be epilepsy? The head rushes vary in severity and frequency, usually first thing in a morning , less during the day and worse in an evening. Today they are particularly bad.

Have you come across similar symptoms?

Phil H.

Your complaints of insomnia and reflux are not too uncommon with Mirapex. However, I have not really heard any similar stories about "head rushes" so that may not be due to Mirapex or something that is particular to you taking this drug.

Sent: Monday, June 09, 2008 8:38 AM
Subject: Tramadol and RLS?

I started taking tramadol about three months ago, along with nortriptyline. They were prescribed for an unusual cough and have worked well. I've tried to stop the nortriptyline, once about a month ago, and I'm trying again now. The cough was still bad a month ago, and I'm not sure yet what will happen this time.

When I stopped the tramadol last time I had really bad RLS symptoms right away (up all night). I've had symptoms in varying degrees since childhood (I'm 58). Last night I was up all night. When I saw that it was happening again I took the tramadol, but it didn't kick in till around 5 AM. I don't think the symptoms were ever so bad before taking the tramadol. Prior to taking the tramadol it was often enough to take a couple of ibuprofen to stop the 'jumpy legs' as I used to call it.

Does this make any sense? When the medications for RLS first came on the market I was hesitant to try them because the symptoms were not an every day occurrence and I didn't want to over medicate. Now I really don't know what to do.

Donna R.
NYC

The most likely explanation is that the nortripyline has worsened your RLS and the tramadol was simply treating the increased symptoms. Stopping the tramadol then removed the only drug treating the exacerbated RLS symptoms.

It is also possible that you developed RLS symptoms during this time for other reasons (other medications, increased stress, or other factors that may never become apparent).

Sent: Tuesday, June 10, 2008 10:03 AM
Subject: Re: Tramadol

I was taking the nortriptyline for about 8 month prior to this episode for post surgical nerve pain. I believe that it was masking the cough which only became apparent in it's fullness after I stopped taking the nortriptyline, as I felt the nerve pain had healed. It had, but as the cough got worse, nortriptyline was suggested along with the tramadol (for the cough).

Originally, before we landed on nortriptyline for the nerve pain, I was given anitriptyline which did have a dreadful effect on the RLS. The nortriptyline didn't have that effect.

I'm beginning to think that I won't be needing the nortriptyline any more (long story, and yes, there is some stress as well as radiation and (tomorrow) chemotherapy involved)

Is it worth a try to continue with the tramadol for perhaps another month before stopping again to see if the RLS effects have subsided? I like the fact that I don't experience any (obvious) side effects from it.

Many people on the web site spoke of a drug holiday. I've never done that, except for those two disastrous times. I'm taking 50mg, one each morning. How important is the drug holiday and just what is it's purpose?

Donna

Nortriptyline actually is thought to cause less RLS than amitriptyline, so your experience is in line with out thoughts on these drugs.

I use tramadol extensively to treat RLS on a chronic basis with very little downside (for most users). When used at low doses (1-3 per day), there is likely no reason to take a drug holiday to prevent tolerance and dependence (as these problems occur rarely, if ever at those doses).

For higher doses of more potent drugs, taking drug holidays has a possible (but totally unproved) ability to prevent those problems. However, taking drug holidays without having backup drugs to treat your symptoms is very hard on patients and therefore should not be done lightly.

Sent: Monday, June 09, 2008 10:12 AM
Subject: RLS

I am writing you again about my restless leg. I am now taking 1mg twice a day of Mirapex along with1one tablet of Neurontin 300 mg three times a day. Do you think I am taking too much Mirapex ? I seem to be doing much better on this dosage most of the time.

Although most RLS patients do not need more than .5 to .75 mg per day, there are some who need a little more. I do have some patients on higher doses than yours but most do well with lower doses. When tolerated, most RLS patients take more Neurontin than you are taking (when used 3 times per day).

Sent: Tuesday, June 10, 2008 9:34 AM
Subject: PLMS

I was very happy to find your website and I am hoping to find more information about treatment for PLM during sleep. I read about the various drugs on the site and I am wondering if there is any polysomnogram documentation that supports which drugs actually stop the leg movement as opposed to still having arousals but being less aware of them.

I currently take Requip, but respond much better to ambient. I fear overuse of ambient, however. If you could refer me to someone that I can discuss treatment, I would greatly appreciate it.

Nick G.

The sedatives such as Ambien or other sleeping pills decrease arousals from the PLM but do not decrease the amount of them significantly. Generally, most people can take Ambien nightly and not have any problems.

The drugs that reduce the PLM best are the dopamine agonists, Requip and Mirapex. The next best choice would be the anticonvulsant drugs like gabapentin. Opioids are next in line but have a more modest affect on PLM.

There is very little research done on PLM otherwise so there is really no one else to refer to at this point.

Sent: Tuesday, June 10, 2008 8:20 PM
Subject: Requip questions

I’ve only been suffering from RLS for the last 5 years however for the last 12 years I’ve had sciatic issues during and after two pregnancies which seem to occur when I gain weight. I’m curious if there are studies linking the two and if gaining weight is a factor in RLS. I am 5’2” and typically 130 lb., however during pregnancy in both cases I topped out at 190 (I am currently 145 lb. and very athletic/fit).

Last year I finally went to the doctor for medical assistance for my RLS – thankfully advertisements gave me confidence that I wasn’t the only one suffering from this rare physical abnormality – and I am pleased with the medication. I do feel it’s less effective than when I started (when I started I feel asleep in 30 seconds…now 30 minutes) but it gives me the peace of no more sporadic motion and rest I need. Oh, and I wanted to note that I take good care of myself…however when I applied for long term disability this spring and noted that I took Requip I was turned down (and this was noted as the reason why?!)

Can taking Requip affect my birth control pill effectiveness? Or perhaps would it intensify the negative effect an antibiotic might have? Last month I had pneumonia, and my husband took me to the ER. I disclosed my medications (all of them) and was prescribed an antibiotic…The ER doctor did not tell me that taking an antibiotic may alter my birth control (Necon) but since then I’ve read on the internet that it’s possible there could be adjustments to the effectiveness given certain combinations of medications (and as well if I gained 10 lb. and my BMI (Body Mass Index) went up the effectiveness could be decreased?!?)

I’ll admit I’ve had a few odd symptoms – toothaches, feeling I had a large rock in my stomach, sensitivity to smells…And my period the following week after the ER visit lasted only two hours and now I have these odd symptoms…I think it would be too early to take a home test however the internet articles I’ve read also say “stop taking Requip if you’re pregnant? So, I should wait until my annual visit in two weeks and keep taking my Requip??? Or should I stop taking the pill and Requip now?

Karrie

Gaining weight is not a factor in RLS to the best of our knowledge. It is much more likely that the pregnancy alone worsened your RLS as this is a very well known phenomenon (we are not sure why but it may be due to changes in hormones or decreased iron levels).

Requip does not change the effectiveness of your birth control pill but the BCP may increase blood levels of Requip (making a lower dose more effective or similar to a higher dose). Some antibiotics (like Cipro) may also increase Requip levels similar to estrogen.

Insurance companies love to find reasons to turn people down for coverage so that does not reflect on the severity of a disease like RLS which really should not result in a denial of coverage.

Requip is a Category C drug so must be stopped once you become pregnant. The home pregnancy test are very accurate these days so you can continue the drug until the test turns positive.

Sent: Wednesday, January 30, 2008 6:29 AM
Subject: Mirapex and Weight Gain?

I have had great success with Mirapex for about two years. I take two .5 mg tablets every night. However, it has come at a price. I have had significant weight gain during the period, about 30 pounds. Also I am tired all the time. I was wondering if research has shown any connection between weight gain with Mirapex? I did read where you commented weight gain, usually water retention, can happen with Requip.

While I don't like treating side effects with another medication, I am curious what my options are to deal with this weight gain if it is mainly water retention?

Weight gain has been noted with both Requip and Mirapex. However, most do not gain as much weight as you have done. Some of the weight may be due to water retention which could be treated with diuretics but I agree with you that it is not a wise idea to treat side effects of one medication with another drug.

The main option would be to change to another class of RLS medication (anticonvulsants or painkillers).

Sent: Thursday, June 12, 2008 2:07 PM
Subject: Help getting off Requip?

I have edema. I am wondering if it is from Requip and would like to taper off. I have gone off before and right back on because the RLS got 10 times worse, gradually returning to "normal" RLS. Is there a way off of it w/o this occurring?

Tapering off the drug as slowly as possible does help. The other way to do this is to just take a strong opioid (like oxycodone) for a week or so after stopping Requip abruptly.

Sent: Friday, June 13, 2008 3:35 AM
Subject: Hair loss and vision problems with Mirapex?

I have been taking Mirapex for about 7 years. For the past year I have had hair loss above the forehead and now on the sides. It's been gradual, but now I am getting very concerned. At first I thought it was because of the chemicals for color. My salon tech. assured me that their product was very safe and that they were no cause for it. I have also been doctoring for my eyes, which I thought maybe I had glaucoma or even worse, a brain tumor. The ophthalmologist said everything looked good. I still have blurred vision.

The only medication I take is Mirapex, 0.25MG. Could I be having these side effects from this medication? These side effects don't show when I check it on the internet. I take 2 of these pills every evening about 7:30. Do the other medications for RLS cause the same reactions---like Requip and Sinemet? I would love to stop taking it, but I know I would be very miserable. Could you please give me some advice?

Pat J.

Hair loss is a possible but very unlikely side effect of Mirapex. There may be many other reasons (having nothing to do with taking drugs) that may be causing your hair loss. It is possible that changing to Requip (I would not even consider Sinemet for daily use due to it very high rate of RLS augmentation) may help (if Mirapex was really the culprit) but as they both work on dopamine receptors, it is also possible that things may stay the same.

You would have to change to Neurontin or a painkiller to see whether Mirapex is really the cause of your problems.

Sent: Sunday, June 15, 2008 7:06 PM
Subject: Help for RLS not responding to Mirapex?

I'm 40 and I've had RLS for several years now. Before being diagnosed with RLS I didn't know what was going on with me. I took some of my partner's Ativan at bedtime and slept the night through for the first time in months. Once the Ativan were gone, I went to my family physician and told him everything including how well the Ativan worked.

He didn't know much about RLS so he tried me on Mirapex instead. I was on 0.5 mg of Mirapex at bedtime which helped for quite awhile. Then around 1.5 years ago I then was diagnosed with mild Stenosis, Facet Joint Arthritis and two ruptured discs (one of which set my sciatic nerve crazy). I ended up having 3 spinal nerve blocks before eventually having a microdiscectomy last month that took care of one of the ruptured discs and the sciatic nerve. With that pain gone, I felt a lot of pain in my back that my spinal doctor thinks is my arthritis in my facet joints in my back.

I just received 6 injections of nerve blocks into those joints last week. Off & on for over 1.5 years I was on either OxyContin, Vicodin, Percocet, Morphine or Norco for severe pain in my back & leg. I slept excellent the entire time. I'm now off of pain medicines and just back on Mirapex only. The Mirapex doesn't work at all now. The RLS has also moved to my arms. It is extreme every day.

My family doctor is against pain medications and/or Ativan for whatever reason. I've increased my Mirapex dose trying to get some sleep and it doesn't seem to be working. Is there a specific type of physician I should see besides my family doctor that might be able to help me better with RLS? It's a bad thing when I know what helps but cannot get it. I work 10 hours a day and in my spare time run my own business. This is becoming nearly impossible to do because of the lack of sleep and pain in my legs and arms associated with RLS. Any help or suggestions will be greatly appreciated.

Sleep deprivation is a horrible problem that prevents people from functioning normally. It should be treated aggressively!

It sounds as if you are experiencing augmentation (worsening of RLS) due to taking Mirapex. You would most likely be better off this medication (and possibly even the other dopamine agonist, Requip).

Pain medication (opioid or tramadol) are very appropriate at this point in your treatment. Low doses should work well and decrease or eliminate your need for sedatives like Ativan. When taken in low doses, they are also very safe, even on a long term basis.

Another choice is to try Neurontin or other anticonvulsants. They often work well and may help you get to sleep. If you do need additional help sleeping, a non-benzodiazepine (Ambien, Lunesta) are very effective and much safer to use in the long run.

They type of doctor to see would be to see a neurologist (the ones who specialize in movement disorders may be the best ones) or a sleep specialist. First, make sure that they see a lot of RLS patients and feel comfortable treating more advanced cases.

Sent: Monday, June 16, 2008 1:20 AM
Subject: Do I have RLS?

I have recently had a knee arthroscopy and around 4 days after the operation I noticed the bizarre feelings in my legs as described by many of the users here. These feelings are not noticeable when walking or moving around, so again sounds like RLS. The funny feelings start within minutes of sitting down or resting and occur 24 hours a day 7 days a week. It is not noticeably worse in the evening or bedtime other than of course that is when I am at rest. I can't say I'm really sleeping any worse than I have ever done other than perhaps due to anxiety.

There is no history of RLS in my family that I know of and I have never suffered before, I am a 40 year old male. I have been to my local GP, who doesn't think it's related to the operation or even RLS, she requests I wait a few weeks and feels confident these symptoms will subside. I also had the opportunity to discuss my symptoms with an anesthetist/pain specialist and he also didn't think it was RLS or related to the operation. He did offer to try the drug Lyrica but didn't really feel it would achieve anything and the if the systems did go it would be more down to time rather than the drug.

Can you please explain or give any guidance ?
Wayne H. (United Kingdom)

It does sound as if you fulfill 3 of the 4 criteria to diagnose RLS. There is a small percentage of patients who do not have worse RLS in the evening so it is still reasonably likely that RLS may be the correct diagnosis.

The best test would be to try Mirapex or Requip. Over 90% of RLS patients will respond to these drugs. If you don't have RLS, there should be no response.

Lyrica may help RLS but the response rate is markedly lower than with Mirapex or Requip.

Sent: Thursday, June 26, 2008 1:25 AM
Subject: RE: Advice please

My doctor has now agreed to trial me on Mirapex. She seems however to have little understanding of RLS and has simply prescribed 0.125 mg 3 hours before bedtime, then in 1 week if no improvement increase to a second dose taken mid afternoon.

I'm confused as to how this dosing is accurate based on symptoms that are 24 hours. I was led to believe 0.125 mg 3 times a day would be more suitable ?

Wayne H.

Mirapex is only approved by the FDA for once daily use taken 1-3 hours before bedtime. However, specialists frequently use Mirapex up to 3 times daily to cover daytime RLS symptoms. Your doctor simply does not have enough experience with RLS to be comfortable prescribing it at the 3 per day dose.

Requip (similar to Mirapex) will be coming out in July with an XL version (24 hour coverage with one pill) that should work great for RLS such as yours. However, it will have to be prescribed off label as it is only approved for Parkinson's disease (as were Mirapex and Requip for a decade).

Sent: Wednesday, June 18, 2008 7:26 PM
Subject: Requip?

After ramping up and then being on 1mg of Requip for 7 days, I noticed that I developed a cough, stuffy nose and am coughing up a bit of flem. Could this be related to the Requip?

Gary W

Some people do get sinus problems with Requip so the drug may responsible for this problem. A change to Mirapex may help, although that drug can also cause sinus problems.

Sent: Thursday, June 19, 2008 9:22 PM
Subject: How Long will I know how I am doing in Requip?

I have been on Requip for 20 days, with a ramp up to 1mg. Since starting the drug, I have funny stiffness in my hands, weakness in my legs in the AM, nasal stuffiness and cough, and I still have some restlessness that is keeping me from sleep. Do I keep going at 1mg, or increase? Is 20 days long enough to know I cannot stand the side effects?

Gary W

Sent: Thursday, June 19, 2008 8:04 AM
Subject: What kind of doctor?

I think that my 19 year old daughter may have RLS. What type of doctor should I start with? Or should I begin with her GP?

Mary

Start with your GP. If that fails, she should see a neurologist (especially a movement disorder specialist) or sleep specialist.

Sent: Thursday, June 19, 2008 9:25 PM
Subject: Claritromycine (Biaxin) and RLS

For my RLS I use 1 mg Dostinex a day, because other medications like Mirapex and Requip failed.

For a severe bronchial infection I was prescribed Claritromycine-500. I go to bed with zolpidem (Ambien) 10 mg., which keeps me asleep for 3 and a half hours. For the rest of the night RLS worsens so extremely and keeps me up until the morning. Could there be a relationship?

As I cannot stop with Claritromycine, do you think I could use zolpidem a second time in one night?

Lenie V.

The Claritromycine-500 is an antibiotic that should not affect the Dostinex or RLS. I am not sure why you are having your reaction. Although here in the USA, zolpidem (Ambien) is limited to 10 mg per night, in Europe it is approved for up to 20 mg. You should check with your doctor to see if that is suitable for you.

Sent: Sunday, June 22, 2008 3:58 AM
Subject: Switching from Mirapex to Requip?

Thank you for this opportunity to gain your input on a concern I have....I'd ask my neurologist all this, but because of her status in the hospital/medical school's neurologist department, she is hard to get hold of, and even a call to her nurse means a wait of 2-3 days before a response is given....

I have had RLS for about 16 years now (am a 48 years old female).... was really only diagnosed with RLS in 2006 when it began interrupting my sleep and changing my quality of life drastically..... Then the neurologist prescribed Mirapex (WONDERFUL relief!) at .125 mg per day....

This spring, I changed specialists and the new neurologist is on the faculty of our local teaching hospital, and her subspecialty is neuro-muscular diseases.... She ran a series of tests when I first went to see her (nerve conduction study, EEG, etc.). and determined there was no nerve damage, and that my EEG is normal, which prompted her to take me off of Dilantin (which I have taken for 43 years for a seizure disorder)..... am soon to begin being weaned off the phenobarbital I have also taken for 43 years. for the seizure disorder)......

Anyway, at the time I began to drop the Dilantin, I was on 0.5 mg of Mirapex a day, and since coming off the Dilantin (300 mg/day) completely, have had to increase the Mirapex to 1.0 mg/day, but I still have RLS symptoms.,,, if I am more active (I'm pretty sedentary and am about 200 pounds), then I need more (maybe a total of 1.5 mg of Mirapex)

Rather than continue to increase the Mirapex, she wants me to switch to Requip....beginning with 1.0 mg for 3 days, then increase to 2 mg/day in the evening.....

My concern is this.....I tried to begin the switch the other night and it was as if I had not taken any medications for my RLS.... the 1 mg of Requip did NOTHING .... instead, I spent the night in agony, the symptoms so severe I was actually "vocalizing" (involuntary yelling out during the contractions/spasms)..... they only stopped when I took 1 mg of Mirapex!

The monograph from the pharmacy says Requip "can take several weeks to work".... is this still true if you are already on a dopamine agonist (like Mirapex)? if so, how does one survive the switch? Can I continue to take a lesser dose of the Mirapex till the Requip takes effect? can I go directly to the 2mg of Requip without the 1mg for the first three days?

Ann G.

The most likely explanation for the worsening of your RLS is that Dilantin (like many other anticonvulsant drugs) may have been treating some of your symptoms and stopping it may then have caused an increase in your RLS symptoms.

Changing to Requip will be fairly unlikely to change your situation. Mirapex is about 2-4 times more potent than Requip. Therefore, your 1 mg of Mirapex will need about 2-4 mg of Requip to replace it. Once you hit the correct dose (the first of that dose typically), your RLS symptoms should be controlled about the same as the equivalent dose of Mirapex (for the most part). We increase Requip (or Mirapex) slowly to prevent side effects and let your body get used to a given dose.

It may be beneficial to start another anticonvulsant drug (gabapentin, Lyrica) or painkiller (opioids, tramadol) with Mirapex which might be the best combination to treat your RLS.

Sent: Sunday, June 22, 2008 3:46 PM
Subject: Weight loss medications and RLS?

I have increased my exercise level and cut back on eating and am losing weight. Even so, I would like to explore legitimate diet meds as well. (Not the BS over the counter "lose 30 pounds in 15 minutes" stuff)

With the obvious problems that caffeine and other stimulants cause, are there any meds out there that will not have tons of adverse effects for RLS sufferers? My GP is very open to suggestions when it comes to this because frankly he doesn't see that many RLS cases, so we would appreciate any thoughts. Thanks.....

Dave R.
Lexington, KY

The more general answer is that all the available weight reduction products do little or nothing to keep weight off in the long term (there is little use for medications that work for a few weeks). Therefore, with or without RLS, I would suggest your stay away from them.

There is little to no research or information available on how these weight reduction products interact with RLS. Again, my best advice is to avoid them.

Sent: Tuesday, June 24, 2008 11:06 AM
Subject: Requip and Insomnia?

I have had RLS since my teenage years but have been able to deal with it OK. There would actually be weeks or months between episodes so it wasn't a major, continual problem. However, now at age 63, following 2 hip replacement surgeries in one year, I had to begin taking Requip as the symptoms started up with a vengeance following my surgeries. I now take 2 mg of Requip each evening and on bad days need to take 2 mg in early afternoon to enable me to sit and work at my desk all afternoon.

Is my sleeplessness a side effect of taking Requip daily? The Requip works great for my restless legs, but I still wake continually all night long. Is the increase in symptoms (now EVERY day) related to my taking Requip on a daily basis? How potent is this medication? Should I be taking a smaller dose, perhaps 1.5 mg two times a day?

Audrey H. M.

Sleepiness is a possible side effect of Requip and of the other dopamine agonist, Mirapex. If your RLS symptoms started occurring earlier in the day after taking Requip for a few months, then you likely have augmentation (worsening of RLS symptoms due to taking Requip). If so, it may be better to get off the drug and change to opioids or anticonvulsants. You will need strong opioids for a week or two after stopping the Requip as the RLS symptoms will temporarily worsen dramatically.

Sent: Friday, June 27, 2008 5:23 AM
Subject: Lyrica - Extreme side effects

After finding the right dose of Lyrica (150 mg twice a day), I was thrilled to see all my RLS symptoms disappear. Lyrica was helping me sleep like a baby. Then, the trouble started:

Lyrica started to have an inverse effect on sleeping and I developed world-class insomnia, together with other side effects, the worst of which was blurred vision. When I reached the point that I no longer had usable reading vision, my doctor tapered me off Lyrica. However, to my surprise, the side effects lingered for a long time. Today, almost one month after discontinuing Lyrica, my vision has started to clear up but it still has a way to go. The insomnia continues to be horrendous. Some nights I lie awake all night. Other nights, I may fall asleep for a brief time with many awakenings until 5 A.M. or so when I give up trying to sleep.

My doctor started me on Stalevo 50 three weeks ago with instructions to go to Stalevo 100 if necessary. I started Stalevo 100 two days ago and it does not give complete relief. However, if I could only get to sleep I think I could sleep through the remaining symptoms.

I am wondering if it is worthwhile persisting a while longer on Stalevo in the hope that the insomnia situation will get better. What is the alternative? I have already tried Requip and Mirapex with poor results. I am concerned that my doctor may eventually recommend going on opiates. As given for RLS, are the doses of opiates small enough to avoid daytime drowsiness and intoxication while still being effective on the RLS symptoms?

I seem to be coming to the end of the road with the recommended treatments. I am 75 years old.

Many thanks for your previous replies and for the great information your website continues to provide.

David E.

There is little knowledge or experience using Stalevo for RLS. The major concern with Stalevo is that it contain Sinemet (carbidopa/levodopa) which causes augmentation sooner or later in all those RLS patients who use it daily. I would be very careful taking that drug.

It sounds like painkillers (tramadol or opioids) are the next choice for treating your RLS. Most people can tolerate them very well without daytime drowsiness. However, each RLS sufferer must try them to decide if they are right for them.

Sent: Friday, June 27, 2008 6:24 AM
Subject: RLS. PLMD and PMDD (Premenstrual Dysphoric Disorder)

I'm a 43-year old female who is suffering from the above afflictions. I've been reading the e-mails on the website and have some questions about my medications. I'm taking 1 mg of Klonopin nightly for my RLS/PLMD and 20 mg of Prozac daily for my PMDD. Symptoms of all the above get worse about 2 days before my period.

Requip is not yet approved by my insurance but will be in 9/08, and I'm concerned about possible addiction to the Klonopin (I've been taking it for about 3 years) and also the fact that the prozac is exacerbating my RLS symptoms.

Any advice you can give me would be great so I can talk with my doctor about the best treatment for me.

As Requip and Mirapex are the only 2 drugs approved for RLS, it is virtually unheard of to have them not being covered by any insurance company.

Klonopin does not treat the symptoms of RLS but rather helps RLS patients get to sleep. Shorter acting, less addictive drugs (such as Ambien, Lunesta) are much preferred for this purpose.

Prozac does tend to worsen RLS. Wellbutrin (if it works for your depression and/or anxiety problems) is a much better choice.

There are lots of other choices for treating RLS but they should be considered after trying the more accepted ones (Mirapex and Requip). RLS does tend to fluctuate with changes in hormonal levels (such as your menstrual cycle).

Sent: Saturday, June 28, 2008 5:12 AM
Subject: Morning nausea

I have had RLS for years and take Mirapex (can't miss a dose) and Ambien at night. Could either of these be causing me to wake up with nausea and generally feeling bad in the morning. Bad way to start any day…

Ambien rarely causes nausea but Mirapex may produce this side effect. However, this usually occurs when starting the drug or increasing the dose. It is much more peculiar to have this happen long after starting the drug and staying on a stable dose (although anything is possible). I would look for another possible explanation for your nausea.

Sent: Tuesday, July 01, 2008 11:20 AM
Subject: RLS question

I have been taking Requip since 2001 for my severe restless legs. I tried other drugs, including Klonopin, Mirapex, Neurontin, Sinemet, diazepam, clonidine, Parlodel, Ultram, Ambien, Sonata, narcotics, and Permax. All of these made me sick or didn’t help. I was on Requip 1.0 mg (this works fairly well for me) and reduced it to .5 mg. It took me six months – I was very addicted to it and had a terrible time reducing the dosage.

My problem is that my restless legs are getting worse and I am very reluctant to increase my Requip dosage. I get up several times a night and soak in the tub. Do you have any other suggestions? I would really like to take a “drug holiday”. What about the RLS patch medication Neupro?

I am not sure what you mean by "I was very addicted to it" as there is no such phenomenon as addiction with respect to Requip. If you have RLS, stopping Requip will create increased RLS symptoms but that is simply because you then have nothing treating those symptoms. Augmentation can occur, which is a worsening of RLS such that it occurs earlier in the day, symptoms become more intense and they may spread to other body parts. With augmentation, you may feel that you are dependent on Requip as stopping it will bring on even more intense RLS symptoms.

I am not sure why you decreased your dose of Requip when the 1 mg worked well for you. It may simply be that the .5 mg is not a sufficient dose and that you really need 1 mg to control symptoms.

Without further information, it is difficult to give you more advice. However, the opioids (hydrocodone, oxycodone, etc.) are still available as potent alternatives to Requip. Neupro is no longer available due to problems with crystallization problems of the drug on the patches.

Sent: Tuesday, July 29, 2008 8:45 AM
Subject: Re: RLS question

Years ago I was on Klonopin. When I tried to drop it "cold turkey" I went crazy - got the shakes, was wired to the max, couldn't think straight, and generally thought I was losing my mind. I went to a different doctor (the one who put me on it told me it was not addictive) who confirmed that it was an addiction and told me how to get off the drug. It took me six hard months to do so.

This first time I stopped Requip I didn't have any trouble at all, Now, after having been on it for years, when I tried to cut back, beside the augmentation and increased RLS I have the addiction symptoms that I had with Klonopin. So, I do not want to increase it as it will make it even harder for me to get off it.

Therefore, I'd like to gradually get myself off it, at least for a while and take a drug holiday. Would Neupro be a drug to try in its place?

Ronni W.

Requip is definitely not addictive but stopping it may cause marked worsening of RLS that may simulate withdrawal symptoms that may seem somewhat similar to what you experienced with Klonopin (which of course, is quite addictive).

We typically use a potent opioid (for about 2 weeks or so) to cover the RLS worsening when stopping a dopamine agonist like Requip. This may be very helpful to get off the drug. However, you may not want to go back on Requip. A trial of Mirapex may work better or different class of RLS drug (painkillers or Neurontin).

I am 52 and have been diagnosed with RLS for 16 years. I now take 700 mg Tegretol and 30mg temazepam at 930 pm. I get sleepy about 1130pm. It is hard to get up at 630am. I also take 10 mg Lexapro, 150 mg Buderprion XL for anxiety in the morning. Plus I take 10mg Vesicare for incontinence in the morning.

When I don’t have to work I could sleep until 9am-11am. Is this the circadian rhythm problem?

Diane

It is very hard to answer your questions based just on the information provided. It is quite possible that the temazepam (Restoril) may be lasting too long and causing some of your morning sleepiness (unless this happened before taking temazepam at 30 mg daily). Tegretol may also cause drowsiness, especially when combined with a sleeping pill like temazepam.

The Lexapro may worsen RLS but the buderprion (bupropion here in the USA) is fine.

It may take some work to determine whether you have a sleep problem and/or a medication problem.

Sent: Saturday, July 12, 2008 11:10 AM
Subject: restless legs worse with pre-op medication?

I recently had arthroscopy surgery on my knee. Soon after I was admitted in the pre-op room and given several medications, my restless legs started to "kick in". First on my left leg (my right knee was the one to be operated on), then both legs. After the operation they both started in again. This was in the morning when they normally don't bother me. When I got home they were still bothering me and kept it up all day long. I took Mirapex (.25mg) which did no good. Later in the day I started taking oxycodone/apap 7.5-32 5mg which took care of the pain in my knee and also my restless legs.

Following is a list of the medications they gave me prior to surgery. I was wondering whether you might know if any of these meds could have triggered my restless legs: Lactaid Ringers; Pepcid 20 mg; Reglan 10mg; Ancef 1 gram IV; versed 2mg IV; desflurane; propofol; fentanyl; Decadron; toradol; sequential stockings. Since taking the oxycodone along with Mirapex at night, I have been sleeping very well.

I am 82 years old, and have had restless legs for about 40 years, and have tried everything that I hear about. I am told you are the most knowledgeable person in the country about RLS, and I trust your advice.

It is most likely the Reglan that caused the worsening of your RLS. This is well known and is on our free medical alert card (that you can download from our website) and give to every doctor that will take care of you. Had you done that prior to surgery, you could have avoided the increased RLS symptoms that affected you post operatively.

Sent: Saturday, July 12, 2008 12:36 PM
Subject: Magnesium B and amitriptyline?

I take magnesium b for restless legs which have worked wonders. Now I have been given 25 mg amitriptyline and have noticed my legs have started up again quite early in the day.

Is it the amitriptyline stopping the good work the magnesium b has done? The amitriptyline helps me sleep. Does one cancel out the other?

Although a few patients have reported benefit from magnesium, there is no evidence that it helps RLS nor do the vast majority of RLS sufferers who try it get any benefit.

On the other hand, amitriptyline is well known to cause RLS worsening (and is listed on our website as one of the medications that should be avoided).

Sent: Saturday, July 12, 2008 4:59 PM
Subject: Sleeping Through the Night

I have just discovered this wonderful website and was hoping you might be able to help.

I have had both RLS and OSA for several years now. I was not properly diagnosed until a year and a half ago. Before being diagnosed I think my doctor tried me on every anti-depressant going. Nothing worked. I was then sent to a sleep clinic and while I was put on a CPAP right away (scored 0 on REM), it took them many months to diagnose my RLS. They tried me on several drugs that did not help. In addition to the "creepy crawlies," I also felt like the switch to fall asleep had been turned off. Without medication there is absolutely no way to fall asleep.

The drugs that I have been on lately were Mirapex and Clonazepam. Earlier this year, the Mirapex began to make me very nauseous. I stopped taking it. I was also sick at the time and spent about 3 1/2 months battling viral and bacterial infections. I stopped exercising. So, I was off the Mirapex and not exercising and the RLS symptoms seemed to have greatly diminished (not gone, but I can live with them). I began exercising several weeks ago and noticed the symptoms start up again - stopped exercising and found they died down. To exercise or not to exercise.... I know that exercise goes a long way to keeping one healthy, but when it interferes with your quality of life now, is it better to forgo it?

Also, that switch to fall asleep has never returned. I take 2 x 0.5mg of Clonazepam just before bed every night, along with some melatonin. I'm very, very lucky if I get 5 or 6 hours of sleep (this allows me to function at work), but lately, I have been waking up after 3 hours and finding I'm not able to fall back to sleep (I don't feel any RLS symptoms, just can't sleep). My question is, would there be anything you would recommend that might work better than the Clonazepam?

Or, is there something I can take in the night when I wake up that would allow me to fall back to sleep? I think I should mention that a lot of the OTC sleep medications have the opposite effect on me and will keep me awake all night. I also take Singular in the evening to treat another condition and always avoid caffeine.

Ellen C.

Klonopin (clonazepam) is one of my least favorite sleeping pills. It has a very long half-life (over 40 hours) and can cause tolerance/dependence. It is a potent sleeping pill so I doubt that I can recommend better ones but I can recommend safer ones (Ambien, Lunesta).

It is very likely that you may have been experiencing augmentation from the Mirapex (worsening of RLS due to a dopamine drug) so stopping it would then have helped. OTC sleeping pills are all related to Benadryl (or similar) and tend to markedly worsen RLS.

Mild to moderate exercise helps RLS while more vigorous exercise (and only you can define what is vigorous for you) tends to worsen RLS. There is often no way around this issue.

Sent: Tuesday, July 15, 2008 11:10 AM
Subject: RLS

I have been on Pramipexole 0.25MG for about four years and for the last six months my feet and ankles have been swelling and have been having cramps in my toes and calves. I am not retaining water my doctor gave me medicine for that and it did not stop the swelling. The pramipexole helps with the RLS could I be building an immunity to it?

I take no other drugs. the swelling does not go down I have it continually. I am a 69 year old woman. I take one tablet of the Pramipexole at night.

Typically, the swelling caused by Mirapex (pramipexole) is due to water retention. It should get better with water pills and reducing your water/fluid intake.

The swelling of your ankles would be considered as a side effect of the Mirapex and has no relationship to the drug effectiveness for RLS (therefore, you are not building up an immunity to it).

Sent: Friday, July 18, 2008 5:33 PM
Subject: RLS better with Leg Calm?

I've had RLS for at least a couple of years as well as sleep apnea for which I use a CPAP. My sleep specialist prescribed Requip which made my symptoms worse, he then prescribed Oxycodone which I did not take because it is a narcotic. I did try Night Time Leg Calm from Nature's Inventory and have found it works very well as long as I keep up a vigorous exercise regime including weight lifting and bicycling. I have no idea why it works as you rub a small amount on the lower back.

Gary

It may be working because you do the exercise as that may be the real source of your relief. Try exercising alone and let us know if that helps without the Leg Calm (which does not contain anything that helps RLS despite their claims).

Oxycodone is a reasonable choice if your RLS symptoms cannot be controlled with other medications or means.

Sent: Sunday, July 20, 2008 5:45 PM
Subject: Re: RLS better with Leg Calm?

Thanks for the quick response, I have tried exercise alone and the RLS still comes on. The Leg Calm does work within minutes. I am going back for a new sleep study soon to check my CPAP settings and to see if the RLS is actually better as in my last study my doc said I was kicking all night and waking myself. However I was not using he Leg Calm at the time. I know it sounds crazy and you probably think the effect is psychosomatic but it really makes a difference for me.

Gary

We can never argue with success, whatever the reason. If it works for you, obviously you should continue to use it.

Sleep studies cannot check on RLS but do evaluate the PLM (leg kicks) that typically occur in RLS patients (although many people without RLS have these also).

Sent: Friday, July 18, 2008 5:54 PM
Subject: substitutes for Ultram?

I have severe RLS day and night. I've been through all the Parkinson's disease drugs and for the past 11 years have relied on Ultram. My doctor now has me alternate the Ultram with fentanyl 50 mcg/hr patch. I use a new patch every 3 days. The problem is my Ultram is continuing to loose effectiveness, it controls my symptoms for only 5 hours (that's 2- 50mg pills). I am up at 5 A.M. in the morning because my symptoms wake me up. If I get to the point where the Ultram no longer works, is there anything else to alternate the fentanyl with. How long can I take the fentanyl without developing addiction or tolerance. I am 55 years old so I probably will have many years to have to deal with this. Do you have any suggestions for my situation?

I am not quite clear on how you alternate the fentanyl patch and Ultram. Do you use the Ultram for 3 days after using one patch? And do you use the Ultram at two of the 50 mg tablets only once or every 6 hours?

I can better answer your questions with the above information.

Sent: Saturday, July 19, 2008 4:52 AM
Subject: Re: substitutes for Ultram?

I get a box of 5 fentanyl patches which I use for 15 days (1 every 3 days). I then go back on Ultram -I now take 2 tablets around every 5 hours. I end up taking the maximum dosage(400mg) a day. I last maybe 7 or 8 days on the Ultram- my sleep is disrupted with having to get up at 4 or 5 AM with my symptoms starting that early in the morning. I don't have any problem switching medicines. The Ultram works ok for about maybe 3 days and then it starts not working so well (the time between doses goes from 6-7 hours down to 5 and the evening dose quits getting me through the night and my symptoms begin at 4 or 5am.) I have no problems with the patches. I would appreciate any suggestions you might have. Thank you.

It is hard to explain why they Ultram loses some potency after about 3 days as it should continue to work equally well even after longer use.

However, I do have some issues with your use of the fentanyl patch as your dose is quite high. Therefore, it is not surprising that the very high opioid dose is taking care of your RLS symptoms. Although, any opioid can be used for controlling RLS symptoms, fentanyl is one of the least used for that purpose. Shorter acting opioids are more flexible (a smaller dose can be used in the morning when people are more active, for example) and thus overall lower doses can be achieved.

The high dose of fentanyl dose pose (you are already at a higher dose range than I typically use for RLS patients) some extra risk for tolerance/dependence occurring. I would suggest lower doses of the more commonly used potent opioids such as oxycodone or methadone. In fact, at the more usual opioid doses, there may not even be any need to take drug holidays with Ultram (although using Ultram every 3 days would certainly not be an issue if it works for you).

Sent: Saturday, July 19, 2008 5:23 PM
Subject: Re: substitutes for Ultram?

Thank you very much for answering my questions. Could you please answer one more for me: since I have 24/7 RLS in my legs, arms, and back, what would be the starting dosage for the methadone or oxycodone. My doctor has been willing to work with me about my condition but I doubt he is treating any other patients with methadone.

The typical doses for methadone and oxycodone are 5 mg three times daily for cases of 24/7 RLS like yours. You may find that you can get by with 5 mg during the day while you are active but will likely need 10 mg in the evening.

I have been browsing the RLS website and found your link there. I live in the UK and have recently been diagnosed with RLS although my doctor is still waiting for the results of a blood test to confirm this.

Of the four criteria for diagnosis, the one about symptoms worsening at night does not really apply in my case so I am not sure whether what I have is RLS. The other three criteria are true for me. My symptoms worsen when I'm at work during the day sitting at my desk - I work mainly at the computer and at night I usually have no problems sleeping. When I was pregnant 4 years ago, I did notice that the symptoms got worse at night and I would have to get up to walk around.

Can you please tell me how I can find out for certain whether I have RLS.

RLS is a clinical diagnosis. There are absolutely no blood tests that can confirm the diagnosis or even help in any way to make the diagnosis.

The criterion about worsening at night may be variable (it is the least reliable of the 4 criteria). For some RLS patients, symptoms only come on after sitting for long periods of time, which in your case may only occur at work. If you sat an equal (or likely less) time at home in the evening, the RLS symptoms should then be worse.

It does sound like you have RLS. The best way to confirm this diagnosis would be a good response to a dopamine agonist such as Mirapex or Requip. Over 90% of RLS patients respond to these drugs.

Sent: Monday, July 21, 2008 11:04 AM
Subject: RLS, please help!!

I have just today found your website and I am desperate. I have suffered from RLS for approximately 20 years and have been on meds for it for about 15 yrs. I'm in my mid 40's and I feel like I've run out of options. I've tried, Klonopin, Neurontin, Topamax, Permax, Mirapex and Requip. The only 2 medications that I have gotten relief from is the Mirapex and the Requip.

After a short time on both, I've developed severe pedal edema to the point of alarm. It makes it difficult to walk and I can only wear flip flops as shoes aren't possible. I have it all the way into the ankle and calf now. The Mirapex took about a year and a half of being on it that I showed the side effects, so I went off that med and switched to Requip. I had relief from the RLS and the swelling for about a month then the swelling came back. The dosage amount doesn't seem to make a difference as far as the swelling.

I've tried Neurontin and topamax as adjunct therapy to lower the dosages, the swelling does not seem to improve unless I come completely off the medication. I have RLS 24/7 and into my arms even. Please help me figure out what to do. My doctor has no other suggestions, and as you can imagine I'm at my wits end and want to pull my hair out!

Sharon in NY

There is a very simple solution to your RLS problems. The only choice left is the painkiller category, which includes the opioids and Ultram (tramadol). These drugs are very effective for RLS and also very safe when used appropriately (check our RLS Treatment Page for more information on these drugs). They can be used with Neurontin or Lyrica (if they don't cause edema) which helps keep the painkiller dose lower.

The big problem will be to get your doctor to prescribe these drugs as doctors are very leery about prescribing painkillers on a chronic basis.

Sent: Tuesday, July 22, 2008 11:57 PM
Subject: Drug holidays for RLS medications?

I live in West Virginia and I have had RLS for many years, went to every kind of doctor, took every kind of meds. cried, screamed, walked, suffered terribly. I found your site and read about "drug holidays". I don't understand what this is. I take clonazepam and Neurontin for my RLS. I tried Requip and it gave me migraines and made me sick at my stomach.

My family doctor advised me against Mirapex because of the strange side affects, such as making you a gambler. I need help desperately. I am going to a new neurologist as soon as I can get an appointment. I pray he will be able to help me.

Drug holidays are not well understood. They may be helpful to avoid dependence/tolerance from occurring with addictive drugs like opioids and benzodiazepines.

Clonazepam is a very long acting benzodiazepine (it has a half-life of over 40 hours which means that it is still active when you take subsequent doses the next day) and has a significant potential for tolerance/dependence. Shorter acting sleeping pills such as Ambien or Lunesta are preferred.

Both Mirapex and Requip have been associated with compulsive behavior such as gambling. However, that side effect is very uncommon in RLS patients who take much lower doses than Parkinson's disease patients (who have this side effect much more commonly than the RLS patients). It is certainly worth trying the Mirapex.

Sent: Saturday, July 26, 2008 11:06 AM
Subject: Botox question

I have found your site to be a wealth of knowledge for anyone suffering from RLS.

I am a 47 year old female with RLS. I have taken Requip for a year and a half that resulted in augmentation and weight problems. My Dr. suggested iron therapy. (65 MG 3 times per day with vitamin C) I also take 150 MG of magnesium 3 times each day to counteract the iron. My iron level was 39 in the blood test which is borderline anemic.

That therapy had been somewhat effective although I worry that I may be taking too many metals

My RLS has worsened with the summer heat and now am forced to go back to Requip. I am taking the minimum dose and it isn’t very effective. I am looking for alternative treatments without a lot of side effects.

How do you feel about Botox injections? I have read a study and am curious. I would like to get off daily medication. I have also heard that taking Ambien could be effective which may not have the side effects of a dopamine. I don’t have symptoms in the day but nighttime can be horrible.

Botox was shown to be helpful in one brief study. However, this has never been reproduced and in fact, some RLS patients have worsened after Botox injections.

You may want to consider low doses of painkillers which can be very safe and helpful. Ambien is also very helpful to get to sleep and is generally safe.

Sent: Saturday, July 26, 2008 7:55 PM
Subject: RLS question

Thanks for responding to my emails in the past. You have provided me valuable information in my battle against restless legs. I have tried numerous medications over the years. Mirapex and cabergoline have provided me the most relief of all the medicines that I have tried. One mg. of Mirapex at bedtime helps me sleep pretty well through the night.

However, I still have the leg sensations throughout the day. I have taken Mirapex off and on for about three years. I tried the cabergoline around a year ago and had good success for about two months taking 1.5 mg daily. It seemed to really help my leg sensations during the day. However, it seemed to wear off after a couple months.

So I eventually went back to the Mirapex at night. My question is do people ever rotate Mirapex and cabergoline? If so, how often do they rotate them. I didn't know if that would help their effectiveness especially the cabergoline. I know that they come from the same class so I didn't know if it was possible. Also, is cabergoline still causing heart valve trouble? My neurologist now doesn't prescribe cabergoline due to this.

There is no literature regarding changing from one dopamine agonist to another. However, some patients have noted some benefits by alternating dopamine agonists (typically, this involves Mirapex and Requip). These patients are a very small minority of RLS sufferers.

As cabergoline (Dostinex, Cabaser) is very expensive here in the USA (as it is not approved for RLS but rather only in very low doses for pituitary tumors), there is very little experience with the drug and even less so with alternating it with another dopamine agonist. Although there is no real evidence or reason that alternating these drugs should be helpful, some people may benefit from this therapy. Cabergoline has a very long half-life (over 65 hours compared with 8-12 hours for Mirapex), it may work very differently from the other dopamine agonists.

Cabergoline is an ergot derived dopamine agonist and as such has been associated with heart valve damage. I would be hesitant to use it for RLS.

Sent: Sunday, July 27, 2008 10:53 AM
Subject: RLS

I have been suffering from RLS for 40 years. 5 years ago I discovered Mirapex .25 mg which did help me greatly. About a year ago I had to increase it to .5 mg which is still very low. 10 months ago I was diagnosed with prostate cancer. I was treated with Zoladex and radiation. After 5 weeks of radiation my RLS worsened by at least 300% and my dosage of Mirapex is not sufficient anymore but I am hesitating to increase the dosage to- perhaps- ).1 mg.

I searched the internet and found numerous medications that "might" help but would like to hear more about it. The one that seems to be the most effective is Restex (which is not available in Canada), One patient mentioned OPC (Oligomere proanthociadinide) which I could not locate on the internet. This one however is supposed to be better than Restex.

And what about Siphrol, Vicodin, Restoril, Permax, Ultram? I am really confused. Doctors say there is no direct link between RLS and radiation. Is it just a coincidence in my case?

You should be careful when reading internet advice as many sources may not be very reliable.

Restex (available only in Europe) is similar to Sinemet and although it is very effective for treating RLS, augmentation is a very significant concern (which is why it would not be prescribed very much here is the USA even if it was available).

Siphrol is the same as Mirapex (this is the European name as many countries use different names for drugs). Permax is no longer available here in the USA due to a potential side effect of heart valve damage. Restoril is a sleeping pill that may help an RLS patient fall asleep (but Ambien, Lunesta, Immovane would be preferred).

Vicodin and Ultram are painkillers that do help RLS sufferers but should be monitored closely. OPC has never been studied for RLS and as such I would avoid it (we have no positive or negative information on this drug).

Sent: Tuesday, July 29, 2008 11:03 AM
Subject: Restless Leg Syndrome and Lexapro

Two months after starting Lexapro, I developed RLS. Will the RLS just as quickly disappear when I discontinue use of Lexapro?

Lois S.

Worsening of RLS is quite common with antidepressants like Lexapro. Typically, stopping the offending drugs should reduce or eliminate the RLS symptoms very quickly.

Sent: Wednesday, July 30, 2008 4:57 AM
Subject: Wellbutrin Question?

I have primary RLS as well as mild depression. I took Prozac, then Paxil, then Wellbutrin over about 25 years, and finally tapered off of them about a year ago as I tried to get my RLS under control. I have tried Mirapex, Requip, tramadol, oxycodone, and several others for RLS but had unpleasant side effects. I now take 2 mg. of lorazepam at bed time, along with vitamins, exercise, and some diet & lifestyle changes, which seem to control the RLS enough that I can get to sleep, however sleep has not helped my depression.

Several months ago my doctor started me back on Wellbutrin 300 mg. and I had problems with insomnia, nightmares and nausea. He reduced the dosage to 150 mg and the side effects were reduced but not eliminated. I am now at 100 mg. and I sleep about 4 hours per night and have "dreams" rather than "nightmares",. This is some improvement but I'm exhausted all the time. I have three questions: why am I having Wellbutrin side effects now when I was able to take it several years ago? Is it interacting with the lorazepam? And last, are desipramine, trazodone, or reboxetine worth trying instead? I've read that they are RLS-friendly in most cases.

Guess I'm very prone to side effects, but I'm determined to find something that works!
Sue C.

There is no real explanation for your new side effects with Wellbutrin as it does not interact with any medications that you are currently taking. Your body chemistry and reactions to drug can vary with getting older which is the only explanation that may apply to your situation.

The older RLS friendly antidepressants (desipramine, trazodone, etc.) may be helpful but each patient is quite different and only trial and error can determine your response.

Sent: Friday, August 01, 2008 8:43 AM
Subject: RLS or not?

I had a spinal fusion of L5/S1 about a year ago. Soon after the surgery, I started having what I would call RLS symptoms. Prior to this, I never had any symptoms at all, and there is no history in my family. I was calling them The Stretchies. It feels like a constant need to stretch my legs, sometimes to the point where my muscles are actually sore the next day, because I have pulled on my legs and stretched them so much.

I was on pain medicines (Hydrocodone) for about 2 years due to the back pain and the surgery. When I quit taking the pain medicine, the RLS symptoms got worse. I have been to several doctors (pain management, neurologist, rheumatologist). None can find a reason for these symptoms. Most of them look at me like I'm crazy. One suggested that it was the narcotics causing it. I have been completely off narcotics for a couple of months, and the symptoms persist.

I asked if it could be RLS. I was told that it was not, because I don’t only have symptoms at night. As long as I am up doing something, all is fine. But when I sit down to work, watch TV, or anything, the ‘stretchies’ come back. They go all the way from my feet to my pelvic/hip area. Could this be RLS? I have symptoms day and night. I also often get the ‘jumpies,’ where one leg just bounces constantly.

I am on 75 mg Lyrica three times a day and 60 mg Cymbalta at bedtime as I was recently diagnosed with fibromyalgia.

Could it be withdrawals from the pain meds? RLS? Please help. In order to sit in a chair and work, I have to actually fold one leg underneath me and sit on it.

Sundee M.

It does sound as if you have RLS. As the RLS disease worsens, it tends to occur earlier in the day until it can actually be present around the clock. However, typically the RLS symptoms will be worse in the evening or at bedtime in these cases. Some very severe cases will not notice any circadian variation and will be equally bad 24 hours a day.

Opioids (in your case, hydrocodone) are very effective drugs for treating RLS symptoms. It is quite clear that they were simply relieving your RLS symptoms which should promptly return once you stop the drug.

Have your doctor prescribe Mirapex or Requip and there is an excellent chance that your RLS symptoms will be taken care of.

Lyrica also often helps RLS symptoms but you may need higher doses. Cymbalta tends to worsen RLS. It is also likely that you may not have fibromyalgia. This may be more readily determined once your resolve your RLS symptoms (which should be very easy to do).

Sent: Wednesday, August 06, 2008 11:22 AM
Subject: RE: RLS or not?

I have stopped the Cymbalta. Still taking the Lyrica. I already feel better, as in not being so tired all the time. However, what I'm calling the RLS symptoms are still there. My rheumatologist will not give me Requip or Mirapex or pain meds to make it stop, since he does not believe that’s what I have. He says if the symptoms are in the daytime too, it’s not RLS. I will seek another doctor to help me.

However, I do have one more question. My symptoms are so much worse in one leg than the other. Could that still be RLS or something else? The reason I ask is because it’s my left leg, and up through my lower back on the left side. My left side is the side I had so much trouble with hurting before my spinal fusion. Could that be a coincidence? Already had an MRI and everything to make sure there was no pinched nerve causing the pain in the muscles in my left leg. They could not find any reason. Could RLS affect one leg that much worse than the other?

I know you said the hydrocodone is effective for treating the RLS symptoms, but is there a non-narcotic that will also help? The docs don’t seem to willing to give it out. What about Ultracet or Ultram? Looking for anything here before I pull my hair out!

Thanks so much for your help! I am taking all this information and your website information to another doctor, in hopes of getting help.

Sundee M.

RLS very often occurs during the daytime but it typically is worse in the evening/bedtime.

RLS is often worse in one leg. It may even alternate from leg to leg. However, we have no explanation for this phenomenon.

Ultram is also quite helpful for RLS. I do not recommend Ultracet as the Tylenol that it contain does not help RLS.

Date: 2008/08/11 Mon AM 07:31:08 CDT
Subject: RLS or not?

Does Mirapex build up in your system or does it wear off like a pain reliever would? I do have symptoms in the daytime, so I'm trying to figure out if it would benefit me to split my dosage between morning and afternoon, or if it builds up in your system and so would make no difference

We often do split doses of Mirapex or Requip for daytime symptoms. We even give 3 doses per day if necessary.

Sent: Friday, August 01, 2008 7:50 PM
Subject: Contraindicated rugs

My doctor (and any doctors I've tried) seem to know very little about RLS. I am on Mirapex or Requip (I switch every few months to try to keep my tolerance down) and they work. But I still have killer insomnia and we have tried different drugs for that, mostly without success.

What drugs (especially insomnia drugs, but also any drugs) are particularly contraindicated for RLS, that is, likely to make it worse? I want to make sure I avoid anything that has this possibility as my RLS is just barely under control. I realize that not all drugs affect everyone the same way, but I don't want to risk augmentation. Also, if a drug makes it worse, is it likely to get better again after you stop that drug?

Carol

First, you should download our RLS Medical Alert Card (from the table of contents on our homepage). It contains all the drugs to avoid and you can print out several to give to your doctors.

All the OTC sleeping pills worsen RLS as they are either Benadryl or related to this drug. The prescription sleeping are generally well tolerated by RLS patients and should not be a problem (although, I do recommend Ambien and Lunesta).

Once the offending pill that worsens RLS is stopped, the RLS should return to baseline (where it was before taking the pill).

Do you have any recommendations for an RLS Specialist in my area (High Point, Greensboro). I have an appointment Aug. 7 with an Internal Medicine doctor, but I'm thinking that this doctor may not know much more about RLS than my family doctor.

When I put in Google "RLS specialists North Carolina" I get names of neurologists. So that is the specialist I'm looking for? Then how do I choose a neurologist?
I wish I could somehow get treatment from you.

I'm off Benadryl as of last night. Did I read correctly in your book that Benadryl may cause RLS? So maybe after staying off Benadryl, this condition may reverse itself?

Catherine

Most RLS specialists are neurologists or sleep specialists. However, most neurologists and sleep specialists may have limited knowledge on treating RLS. The RLS Foundation has a list of doctors who state that they treat RLS but how well they to that is very uncertain (it is simply a list of doctors who say that they treat RLS).

The best way to check that the RLS doctor is really good is to get recommendations from your local RLS support group that should have members who have seen one of these doctors.

Benadryl does not cause RLS but typically worsens the symptoms. There are some patients with mild RLS who need virtually no treatment once they stop the daily use of a drug like Benadryl. For others, stopping a drug like Benadryl may simply decrease the intensity or frequency of their RLS symptoms.

For the past 3 days , i am getting RLS say by evening ( 3 to 6 PM) mildly. I normally take 1.5 mg of Requip at 9 PM & completely have a good sleep till 6.30 AM in the morning.
I wondering what could be this issue?

I had a cold problem, taken few antihistamine (non drowsy) , for the past 3 days. But today I have stopped that , again experience come mild RLS.

Manick

Typically, the non-drowsy antihistamines do not worsen RLS, but there are some exceptions.

If the RLS is occurring earlier in the day, it is possible that you are developing augmentation from taking Requip. For mild augmentation (which is what you would have from your description of your symptoms if you have augmentation) we usually just give an extra dose an hour or so before the earlier augmentation symptoms occur.

However, if the problem gets worse and worse, stopping the Requip and changing to another class of medication may be necessary.

Sent: Monday, August 04, 2008 2:02 AM
Subject: Re: RLS & Requip

Do you mean to take a mild dosage of Requip -.25 mg say by 2 Pm so that this will cover the mild RLS during afternoon session. And i can take the normal dosage of 1.5 mg at the bed time which is working perfect in the night.

If this is augmentation of drug, this should not work in the night? .But the drug is working at the night time?

Please correct me if i am wrong?. Also what is your choice for changing the drug , currently I am taking 1.5 mg per day only at night time? Is there any slow release for Requip?

Manick

The earlier dose that is needed in the afternoon can often be smaller than the nighttime dose. However, only trial and error by trying different doses will tell you for sure. Many do need doses close to or the same as their nighttime dose.

Augmentation does not affect nighttime RLS that much (except that symptoms may be more intense and possibly require higher doses of medication). It generally causes earlier onset of symptoms, spread to other body parts or increases in RLS intensity.

Changes of drug classes includes the painkillers (opioids or tramadol) or anticonvulsants (Neurontin, Lyrica, etc.).

The slow release for Requip for RLS was supposed to be ready for this year but after the FDA put up some additional roadblocks, GSK (the company that makes Requip) decided not to pursue this drug any longer. They will have a 24 hour Requip (called Requip XL) for Parkinson's disease real soon which will likely be used off label for RLS.

Sent: Tuesday, August 05, 2008 2:45 PM
Subject: help for car trip

My family is planning a vacation soon and I am already dreading it. I have a very difficult time riding in a car for any long period of time. My legs begin to jerk and my muscles tense up throughout my body. I have been diagnosed with fibromyalgia and take Effexor for it, also RLS and I take Mirapex for it. I have two questions.

Might there be a better medication for me besides the Effexor for fibromyalgia, and do you have any suggestions for the car trip? My legs will jerk from the early afternoon and on if I am in a car for over an hour. Effexor typically makes RLS worse. Wellbutrin (another antidepressant) is RLS friendly but may not help your fibromyalgia.

A better choice for your fibromyalgia may be Lyrica which is also one of the 2 FDA approved drugs for fibromyalgia (the other is Cymbalta which is very similar to Effexor and may also cause worsening of RLS).

If that does help your problem then you might need to take a dose of Mirapex 1-2 hours before any long car rides. An alternative would be to take a pain pill (Vicodin, Ultram, codeine, etc.) 30 minutes before travel.

Sent: Wednesday, August 06, 2008 9:58 AM
Subject: RLS worse after arthroscopic surgery.

One month ago I had arthroscopy surgery on my knee. My knee is doing well (a little swollen and sore), but lately my restless legs have been awful. Last night I only had 3 hours sleep because of the restless legs in the leg that I had the surgery on. I was given oxycodone 7.5-325 mg. I also take Mirapex (.25 mg) 3 times a day - one at 5:00 p.m, another at 7:00 p.m., and the third at 9:00.p.m.

I was taking the oxycodone twice a day, but now I have gradually quit taking them altogether. For the past few nights my restless legs have been unbearable, and the Mirapex doesn't seem to be working. Do you think it is because of my withdrawal from the oxycodone, or from something else?

Will it get better in time? I would appreciate any suggestions you might have. I am 82 years old, and I have had restless legs for about 40 years.

Trauma to the body (which obviously includes surgery) often triggers exacerbations of RLS. That may be the explanation of why you are currently having more problems. The oxycodone was likely treating this worsening (it is an very potent RLS drug) and stopping it simply allowed you to experience your increased symptoms.

You may need a higher dose of Mirapex or perhaps adding small doses of oxycodone may also work very well.

Sent: Wednesday, August 06, 2008 12:39 PM
Subject: Clonazepam?

In one of your responses to a writer concerned about addiction and tolerance to clonazepam, you wrote: “To avoid tolerance and addiction, a regular drug holiday or 2 days off the drug every two weeks is strongly advised.”

Since the letter and response were written in 1999, I wanted to know if this is still the best advice? I take 1.5 mg. Mirapex and 1 mg. Clonazepam before bed, but have noticed lately that I’m awakening frequently again. I’m wondering about this Clonazepam holiday and if it is still recommended?

Cassie H.

Clonazepam is one of my least favorite drugs (despite the fact that many general doctors like to prescribe it). It has a 40 hour half-life which means that most of the drug is still active the next night when you take your next pill. If you are not sleeping through the night with this drug then it is very likely that you are developing tolerance to the drug.

Although a drug holiday (of about a week or 2 as this drug has a much longer half-life than most other benzodiazepines) may help restore the potency of this drug, I would recommend getting off the drug and changing to a safer sleeping pill such as Lunesta or Ambien.