Patient letters on RLS symptoms and remedies- Page 82

Sent: Wednesday, August 06, 2008 5:16 PM
Subject: Change in medications?

For the past 3 years I have taken .5 mg of Requip at bedtime for PLMD, which was detected during a sleep study. The medication was prescribed by a pulmonologist that specializes in sleep disorders. The study also detected sleep apnea which is being effectively treated with CPAP. I also experience periodic RLS, primarily when I first go to bed. It is very annoying when I have episodes.

I take Wellbutrin and Prozac for depression and .75 mg of Xanax at bedtime as a sleep aid. I have also been diagnosed with mild ADHD.

The sleep specialist I was seeing moved. I began to experience increased lack of concentration and forgetfulness. My family doctor suggested I increase the Requip to 1 mg at bedtime, thinking I was experiencing increased PLMD symptoms, which was affecting sleep, and in turn worsening my ADHD. I did this for a month, but did not experience any improvement with my symptoms. I believe the increased dosage of Requip made me drowsier the next morning.

I recently saw a new doctor, a neurologist who works with sleep disorders. After talking with me he indicated he did not believe PLMD was the cause of my symptoms. The doctor said it was uncommon for PLMD to cause enough arousals to negatively impact my sleep. He suggested I stop taking the Requip to see what impact it had on my sleep. The doctor indicated there would be no problems with discontinuing the drug abruptly because of the low dosage. In addition, he gave me Provigil to take on a trial basis to help improve my memory and concentration. I will be having an EEG in 10 days and some other tests to diagnose what may be causing the my memory and concentration problems.

I have two questions. One, will I experience any problems with discontinuing the Requip without gradually reducing the dosage? The doctor said I could restart the Requip if the RLS was a problem. Second, how will Provigil affect my RLS and PLMD?

Although I would welcome eliminating Requip on a daily basis, I wonder if I have been taking it for 4 years without a sound basis.

Thomas S.

Medical Reply

It is hard to comment completely on your situation without knowing the amount of PLMS with arousals/hour that occurred on your study.

However, there are some general concepts that apply. There is a very significant controversy whether PLMD is even a real disorder and should be treated. There are many sleep specialists (and here I mean the academic ones who are amongst the top sleep experts in the country) who feel that PLM may be occurring because of the arousals and not the cause of the arousals and thus are merely an interesting phenomenon.

If the Requip did not really make you feel better then it may not have been doing anything useful (other than perhaps helping any RLS symptoms). However, if you had no significant side effects (although, the morning drowsiness with the increased dose may possibly be a side effect) then I would not worry about having been on this medication for no reason.

However, discontinuing the Requip (abruptly or slowly) may cause a temporary worsening (possibly marked) of your RLS symptoms. This can be taken care of with 1-3 weeks of an opioid like Vicodin.

The Provigil should not affect your RLS or PLMD. We use this drug with RLS frequently enough without problems.

A Reply from Thomas S.

Date: 2008/08/08 Fri PM 03:28:39 CDT
Subject: Re: change in medications

Thank you very much for your response. Here are the results of my sleep tests: Initial Test (prior to use of Requip) PLMs: NREM 258 REM 5 Total 263PLM Arousals: NREM 4 REM 0 Total 4 Second Test (.25 mg Requip, 5 mg Ambien, 0.5 mg Xanax taken at bedtime) PLMs: NREM 121 REM 5 Total 126 PLM Arousals: NREM 0 REM 0 Total 0 Third Test (.25 mg Requip, 10 mg Ambien at bedtime) PLMs: NREM 78 REM 0 total 0PLM arousals NREM 0 REM 0 Total 0

The pulmonologist who treated me until just recently commented that from his review of the studies he could not adequately state that PLMs are not post arousal events rather than a primary sleep disorder. Regarding the use of an opioid, would tramadol be an option? I have a prescription for this medication for chronic knee pain. I greatly appreciate your help. Your site is a virtual goldmine of information for people suffering from RLS.

Thomas S.

Medical Reply

As you have very few PLM arousals, your PLM problem is medically trivial and you definitely do not have PLMD.

Ultram works very well for many RLS patients. It produces less problems with tolerance and dependence than the opioids.

Date: 2008/08/14 Thu PM 12:40:09 CDT
Subject: Mirapex

My doctor put me on this recently. I was having a good response to it until a few weeks ago. I started my menstrual cycle and it has been ongoing for three weeks now. I am also on citralopam. Could either or both of these be causing this? I am 34 and I think it is too soon to be having pre-menopause symptoms.

 Any advise you can give me? This has never happened before my cycle has always been on time lasting no more than 6 days at a time.

Joy M.

Medical Reply

Mirapex should not cause any menstrual problems. However, Celexa (citralopam) may worsen RLS.

Date: 2008/08/15 Fri PM 05:34:07 CDT
Subject: why couldn't one mix Mirapex and Requip??

In the US Mirapex is expensive and there is no generic alternative - my insurance does not cover. Requip generic is cheap, but for me, does not work well. 1/2 dose of Mirapex (1/2 hour before bed) and 1/2 dose of Requip (at bedtime) works very well, and is half the price of Mirapex alone.

But my doctor says absolutely not one cannot take them together. Why not as on your website you seem to be saying this is no problem.?

Mark G.

Medical Reply

There is no compelling reason not to combine these drugs together. However, it is quite unusual to have to do that. It is kind of like driving to work half way with a Chevrolet then changing to a comparable Pontiac...not something many people would think of doing.

However, there are no real other issues preventing you from mixing those drugs other than getting your doctor to prescribe them.

A Reply from Mark G.

Date: 2008/08/15 Fri PM 11:58:47 CDT
Subject: RE: why couldn't one mix Mirapex and Requip??

For some strange reason, for me, half-and-half works way better than either alone.  1/2 mg Mirapex and 1mg Requip works great, I sleep like a baby and feel no symptoms night or day.  1mg Mirapex, I sleep all right but not perfect and feel a little RLS during the day (and it is expensive). 

Requip alone, I have to take 6mg to get rid of symptoms, and at that dose I get side effects.  No idea why this would be so. 

Mark G.

Medical Reply

it is often difficult to explain why different people respond to various treatments but once you find out what works, stick with it.

Sent: Tuesday, August 19, 2008 8:44 PM
Subject: RLS, Mirapex, Dyskinesia (Augmentation) and Depression

I started last summer to talk to my PCP about my RLS as it had come to a point where I was loosing too much sleep - I've had symptoms for over 15 years but they didn't become overly disruptive or routine until last year. He initially started me on a combination of lorazepam and Neurontin (I forget the dosages) and at the 2 week follow up visit I gave in and accepted the Mirapex starter pack since the current treatment wasn't working (I was hesitant to take a DA since a family member had experienced adverse reactions to ropinirole earlier on and also on Requip when that initially came out - their RLS hasn't been as severe but their doctor felt it was worthy of going onto a DA).

I noticed an improvement when I hit the second level of dosage of the Mirapex starter pack (.25mg?). That worked well for about a month, when my legs began to act up during the day so my PCP upped my dosage to 2x per day, an hour before bed and first thing in the morning. That worked well for about another month then began to be ineffective both at day and at night.

Prior to my next scheduled appointment I suddenly (and I mean SUDDENLY) woke up with what my PCP and the neurologist he referred me to both referred to as Essential Tremor and the neurologist's associate who saw me in the hospital when I was admitted with fears of many different causes determined I was experiencing dyskinesia (sp?) due to the Mirapex and he stopped that completely and put me onto clonazepam and temazepam and did a full MRI, lots of blood work, the iron testing and a spinal tap - all of which returned normal results.

The removal of the Mirapex did remove the dyskinesia. I only use the temazepam when things get really bad (such as tonight where I am still awake and in severe pain). I was then upped to 1mg clonazepam 3x per day but still having sleep issues as well as the daytime pain - I am worse off following being on the Mirapex and refuse to try Requip despite the reassurances that augmentation and side effects on one are not typically experienced on the other.

I was then put onto another extended release anticonvulsant which caused bowel issues and a spike in my liver tests so that was discontinued after a month.

I was then put onto tramadol 50 mg 4x/day (2 in the am and then lunch and bedtime) by my PCP. My neurologist said he had no problem with using tramadol at that dosage but anything more we would have to try something different. That worked wonderfully for the past 5 months - the longest I have had relief in what seems like a very long time. I still occasionally take the temazepam (a 3 month supply lasted me for 7 months) for nights when things are too extreme to sleep. I have removed caffeine and most sugar from my diet, with nicotine being the only thing that is a known antagonist still a habit which I have tried but have been unsuccessful in breaking.

But in the past 3 weeks things have gone to hell. The tramadol is no longer covering the pain and I find myself not being able to sleep even with the clonazepam and occasional temazepam and tramadol. I find it difficult to move when I get up in the morning and that 'stiffness' lasts till well into the afternoon. Any massaging of my legs only seems to relieve the urge to move but not the pains. I have slipped into a depressive state and took a week of vacation time and did absolutely nothing during that.

Back at work I am sluggish and losing effectiveness as I have to constantly shift around - my mind is still sharp but I find myself unable to keep up - all my decisions are correct but I will tend to glaze over and blankly stare at the computer screen. I just don't accomplish as much as I know I should and know I can. I feel useless and used up with no motivation or energy or enjoyment in any of the things that used to bring me joy - my hobbies are too taxing to even think about taking time in. I sit or lay in bed and do nothing but suffer and break out in tears from time to time. I have tried increasing the dosage of the tramadol with no improvement in condition so returned back to the prescribed dosage.

My insurance coverage doesn't provide for any psychological therapy, and I can't afford an extra $120 per session for any therapist sessions, so I am planning at my next neurologist appointment (8/27) to ask for Wellbutrin (as that sounds like the only option for an antidepressant), but I don't know what to do for the RLS or if the depression is being caused by the tramadol/clonazepam combination. I cannot sleep. My gate is abnormal and I find myself shuffling to walk steadily as my legs are in pain even when moving.

What would you recommend? When I first saw the doctor a year ago I considered my case a mild to moderate case, now I would classify it as severe to debilitating. I have tried to take a drug holiday (though without something to replace my current meds with) but can't stand the side effects and the holiday lasts from Friday afternoon till mid Saturday afternoon. As soon as I take the tramadol and clonazepam dose the side effects subside almost immediately, but the RLS symptoms are still front and center.

Any advice on what direction to try and steer my neurologist towards would be appreciated - my PCP recommends that if I have one more visit that isn't up to my expectations to switch to a different neurologist locally (he feels the neurologist he referred me to specializes in only sleep apnea cases) or seek treatment at either the University of Michigan Hospital or the Cleveland Clinic.

Greg M.

Medical Reply

Your case is clearly complex and the answers that I provide may be too limited to provide a complete solution. However, there are some issues upon which I may be able to shed some light.

It does sound as if you developed augmentation from Mirapex and since it was quite severe, I would stay away from the dopamine agonist group of drugs. Your dyskinesia issue is somewhat puzzling as there has never been a reported case of this side effect occurring in RLS patients (it does occur in Parkinson's disease patients). Since I obviously have not seen your abnormal movement problem, it is quite difficult to suggest what may be causing it.

Tramadol generally works well for many RLS patients. I am not sure why it is not working now although augmentation has been described with tramadol (the only non-dopamine drug that has been documented to cause augmentation) so that may be a possibility (or maybe simple tolerance?). I would suggest trying an opioid such as oxycodone or methadone (my favorite opioid but often very difficult to get your local doctors to prescribe).

Pain can be a component of severe RLS and often responds to anticonvulsants (if you can find one that does not cause side effects) or pain medications (opioids or tramadol).

As far as your sluggishness, this is very likely due to clonazepam (especially when taken with another benzodiazepine such as temazepam). Clonazepam is my least favorite drug for RLS as it has a very long half-life of 40 hours. With 3 doses per day (generally only one dose should be needed with its very long half-life) most people would end up an walking zombies (with the exception of extremely anxious psychiatric patients). This drug should be weaned off slowly under supervision by your doctor.

Once your RLS is under control and your drug-induced daytime fog is reversed, you may not need anything for depression (as the source of your depression may be gone). If depression persists, Wellbutrin is a good choice for RLS patients.

A Reply from Greg M.

Sent: Wednesday, August 20, 2008 7:44 PM
Subject: Re: RLS, Mirapex, Dyskinesia (Augmentation) and Depression

Thank you SO MUCH for your response - I greatly appreciate the time you take to respond to pure strangers whom are not compensating you. You are truly an angel. I ordered your book this morning and hope that it arrives in time for me to read a good portion of it before my next appointment - I have seen it mentioned in the forums and have meant to buy it - your timing in mentioning it was impeccable.

Your information, though incomplete due to this obviously not being a full office visit, makes so much sense to me - I actually feel optimistic for once being in receipt of this. I doubt my neurologist will take it as legitimate advice if I share your response with him - and I honestly wouldn't expect him to, but it makes me feel like the right doctor is somewhere nearby I just need to find him or her. (I am afraid one may be in the same office as the one I am currently seeing and don't want to upset the politics of the office - I have asked to see the neurologist I saw during my hospital stay as his bedside manner was spectacular and he knew more about RLS than the doctor I currently see, but the office staff has recommended I don't try and make that switch - which in writing that concerns me that the treatment I am receiving isn't necessarily being based on my needs but the luck of who I happened to end up seeing for when my first appointment occurred).

On the subject of moving to an opioid, with methadone being your favorite choice, what kind of initial dosage would you expect to be prescribed for a 180# male - the online medication descriptions speak of titration and conversions from other agents but I can't isolate a starting point like many other medications descriptions provide - I can decipher how to generate a dosage based upon an amount a heroin addict was using but not a baseline for pain use. If I am able to persuade my neurologist to explore that route what kind of plan should I expect if he is serious (I don't want to end up being short-sheeted and end up spending months suffering under inadequate dosages to get to a working dosage)?

I also see that the warnings for respiratory depression are much more prevalent on methadone than oxycodone (which I have been on for injuries in the past so I am familiar with what kind of results the different doses those would yield - I assume for extend use treatments staying away from the preparations which include acetaminophen is advised to avoid any more liver damage than is required) - with this much more extreme warning do the benefits of methadone over oxycodone with careful and responsible use outweigh the risks? Would the assumption that a smaller amount is required compared to the oxycodone results in less damage to the bodies core organs be an accurate hypothesis?

I know of one patient on one forum who did manage to get onto methadone after augmenting on both Mirapex and Requip - and notes she will still wake at night as she basically requires dosing every 4 hours (even though my research indicates analgesic effects are said to last 4 to 8 hours and the half life of the methadone is between 8 and 59 hours - thus the titration requirement to allow the drug to build up slowly and avoid overdose during the initial intake). So while the methadone - in her case at least - gives relief from the pain and sleep deprivation, she still experiences interrupted sleep - is this common or do many of your patients on this therapy experience longer periods of analgesic effects?

I am cautiously asking for some guidance as try to pursue the stronger opioid route - I don't want to push overly hard as I do not want to be labeled as a drug seeker, but I want relief and the best way to achieve that end is to be well informed, knowledgeable and persuasive. I will gladly settle for oxycodone if that is all I can get, but having valid arguments for my doctor (and that is why I am asking specific questions as opposed to asking what I should tell him to convince him) that are of my own research and based on factual information seems the best approach.

As a final follow up - one comment you made in your response "Since I obviously have not seen your abnormal movement problem, it is quite difficult to suggest what may be causing it." I will say my daytime movements during extreme flare ups are a scaled down version of the infamous Michael J. Fox interview during the 2004 presidential campaign (during all the broo-ha-ha with Rush Limbaugh, et. al). On a normal day only from my hips down am I moving like him (to a somewhat lesser degree though) but on a day when I really flare up (like this afternoon to the time I am typing this and all day Monday in this week alone, and such as when I was admitted to the hospital with the ET although that had been occurring for over a week as that was how long it took the neurologist to get me in for a new patient appointment) I look just like him but not as constant, more like the motions of an old wind up toy soldier walking where suddenly a movement will occur because the tension on the spring was enough to overcome the rust on just the right gear since it needs a little oiling up. I don't expect you to make any kind of diagnosis based on this, I just wanted to offer you some insight as this is the description that my coworkers and family have given to me while watching me in the different progressions throughout the past year.

Again, thank you so much and I look forward to reading your book - I should have ordered two in order to give one to my neurologist to keep and share amongst his office - I will recommend it to my family members who are trying to understand what I am going through and hopefully more contributions to the foundation can help shed more light on this affliction. And I apologize for all the parentheses - that is extremely improper but since I am actually sleepy right now I am going to try and get some sleep instead of retooling paragraphs to eliminate them.  As a side note - I have been unsuccessful thus far locating anyone specializing in RLS within a reasonable distance for regular office visits, have you or any of the medical community considered interactive web office visits (thus reducing the cost of me traveling to say you for a consultation) via webcams? Or would state to state licensing and the DEA and FDA make it more of a hassle than a benefit?

Greg M.

Medical Reply

Methadone does have a list of adverse reactions that can be quite frightening (if you read the side effects of aspirin you would wonder why doctors recommend this drug to millions of Americans). For the most part, side effects of opioids are very similar and depend more on the dosage and potency of the drug (a small dose of a potent opioid would cause the same problems as a larger dose of a weaker one). As such, we can get by with lower doses of methadone than oxycodone or other less potent opioids (the less potent ones typically are combined with acetaminophen or aspirin).

Methadone has the advantage of lasting longer than (relief from RLS for 6-10 hours for most sufferers) and seems to work better. I typically start at 5 mg (which can be given up to 3 times per day if necessary) then increase by 2.5 mg (1/2 of a 5 mg tablet) to a maximum of 10 mg per dose. Size of the patient does not seem to matter very much but those with more severe RLS tend to need the higher doses. Oxycodone is a reasonable alternative to methadone.

Your movements are still somewhat confusing and may be difficult to diagnose even if directly witnessed.

Your physician may do better with one of my other books as it is directed to physicians (he may find the information more credible).

Physicians generally do not do web visits yet (this may change somewhat in the future) as insurance companies mostly do not reimburse for encounters that are not face-to-face. In addition, with disorders like RLS, I find that I get a lot more information (often due to non-verbal cues) with live visits. Prescribing opioids (which cannot always be done out of state depending upon which states accept certain other states medical licenses) is often difficult and dangerous to patients who are virtual rather than live.

Sent: Tuesday, August 19, 2008 10:01 PM
Subject: Forgot to add to that last email....


My RLS is in the evenings and at bedtime. I do get it sometimes during the day---at the theater or when resting, but my main concern is bedtime, as I do not get much sleep and it is poor quality. Also, I started taking Adderall during the day---I usually just take 10 mg or break it in half and take 5 mg when I wake up. I don't think it affects my RLS because I had it for many years before I ever took any Adderall.

I had a very bad reaction to Requip (which I only tried once, but never want to try again because it was that bad), and I am afraid to try Mirapex because of all the side effects associated with it, and the augmentation. So far I have been getting by, on and off, with Lunesta, I tried Klonopin (1/2 a pill at bedtime) for a short time and it made me sleepy during the day---and I read it had really bad withdrawal symptoms if stopped, so I didn't want to continue with that.

Then I was switched to Xanax, which I also break in half. I do not take it every night for the same reasons as the Klonopin. So, I just suffer (terribly!!) half the time, and the other half of the time I sort of alternate between these things that are not meant to stop the RLS but help me to fall asleep. I do not take enough to even get a good nights sleep, but it does help me fall asleep so I don't have to deal with the RLS as long (by the way, I have had a severe case of RLS since I was young---I am now in my 40's).

I also have a lower back problem with a bulging disc, and sometimes I take Tylenol 3 or a Vicodin for that pain. I take them sparingly because sometimes it makes my acid reflux act up. I have noticed that those get rid of my RLS symptoms. I don't sleep well if I take Vicodin before bedtime, for some reason, but am OK with the T3. Anyway, my question is this: why are Parkinson's medications (and the other kinds like that) the preferred medication for RLS when it seems like they have worse side effects than some of the other classes of medication--- what is worse about taking the pain medication instead? Do you get augmentation with the pain medication?

I don't get tired during the day, or any bad side effects with pain medication, but I have only been offered Requip and Mirapex by the doctors I have discussed my RLS with over the years. Also---some of the other medications for RLS have a side effect of weight gain, but I need to lose 40 pounds. In fact, I just started going to a nutritionist, and I can't imagine trying to lose weight---which is hard enough---while taking something that actually causes weight gain. What makes the Parkinson's meds so much more preferred?

I don't even know how to talk about this with the doctor. I'm afraid they are only going to offer me the same couple of things I know I don't want to take. I just don't know how long I can continue suffering in silence.

Eve

Medical Reply

The dopamine agonists (Parkinson's disease medications) are preferred as they have been the most studied drugs for RLS, 2 of them (Mirapex and Requip, of course) have been FDA approved which means that they have passed rigorous standards to prove effectiveness and safety and generally work best for most RLS patients. However, as with all medical treatments, the preferred drugs are not for everyone.

When the dopamine agonists are not helpful or appropriate, anticonvulsants (Neurontin, Lyrica, etc.) or painkillers (opioids, tramadol). Unfortunately, weight gain is common with the anticonvulsants (but you should try them before ruling them out as you may gain weight).

The opioids (as you have already noted with codeine and Vicodin) work very well for RLS. Acid reflux is an usual problem for this class of drugs but may be treated with drugs like Prilosec. We often prefer the "pure" opioids such as methadone or oxycodone (but these are schedule II drugs that doctors are more reluctant to prescribe due to their increased potency) as they do not contain acetaminophen (Tylenol) which does not help RLS so can only cause side effects without any benefit.

Sent: Monday, August 20, 2007 6:52 AM
Subject: RLS

I have found that taking 1mg of Requip two hours before my normal bedtime does the trick. Since off of the Celexa (20mg) my RLS mostly begins in the evenings. I am getting a much better night's sleep and not bothered by RLS. However, can Requip cause a change in eating habits? I have turned against food such as thinking about it, preparing it, and consuming it and. lost two pounds in the past three weeks. and Requip is the only thing that is different in my life.

I tried to half my medication one evening and had to take the rest of the dose. I am presently on Prozac (10 mg) but that is since my eating problems. I am very appreciative of all your interest and help and will anxiously wait for your expertise in this matter. Thank you so much!

Sandra B.

Medical Reply

Generally, if Requip has an effect on eating it does so by causing nausea. However, any given individual may experience weight gain or loss (due to fluctuations in the amount they eat) from this or any other drug.

A Reply from Sandra B.

Sent: Thursday, August 21, 2008 3:02 AM
Subject: RLS

You helped me sometime ago suggesting that I change my anti-depression drug as I was taking Celexa. I did. I am now on Meripex and it is really helping at the lowest dose a major part of the time. Requip gave me too many uncomfortable side effects.

My question to you is can RLS cause a feeling of stabbing pains in the legs? Last night was most uncomfortable and the first thing I wanted to do was consult you.

I will appreciate hearing from you regarding this new situation. I have my physical coming up on 9/2 and will mention it to my physician. He is very open to listening to me regarding searching the problem out.

Sandra B.

Medical Reply

Stabbing pains in the legs would be a more unusual presentation for RLS, but not impossible. The way to differentiate this pain from non-RLS generated pain would be to see if the leg pains get better with movement, return at rest and are associated with an urge to move your legs. If the above symptoms occur with your leg pains then they are most like due to RLS; otherwise, look for a different explanation.

A Reply from Sandra B.

Sent: Saturday, August 23, 2008 5:14 AM
Subject: Re: RLS

I appreciate you getting back to me so quickly. I realize that it is the weekend and I promise to be patient for your response.

Regarding my situation. 8/19/08 the generic drug omeprazole (Prilosec) 20 mg was prescribed for an acid condition and I began taking it on that date.

Could this Rx that I am taking cause RLS to increase? It seemed to occur immediately. Last night I took two Mirapex .0125 mg instead of my usual one tablet and had a good night's sleep. The previous night I did get up twice when the unusual feeling came about and it did stop until I returned to bed. Your recommendation was very good and I thank you.

I am only on omeprazole (Prilosec) for two weeks and then will take as needed. Thus far heart burn has only occurred twice this month so hopefully I won't be taking it too often.

I cannot tell you how much this site means to me. It has been very helpful. By the way, my mother had RLS (didn't call it that back then) and my daughter has it at times.

Sandra B.

Medical Reply

There is no known link between Prilosec (omeprazole) and RLS. Furthermore, I have many RLS patients on that drug with no complaints. However, anything is possible so in your case there may be a link (without any good explanation). The only way to prove it would be to stop the Prilosec and see if the increase in RLS symptoms improves then worsens again with restarting the drug.

Sent: Thursday, August 21, 2008 8:26 AM
Subject: RLS and arrhythmia

I am a 50 yr old male with a mild benign arrhythmia and have found reasonable control of my RLS with Mirapex. While grasping at straws to control my RLS without significant meds I visited an Acupuncturist. While he was not able to provide long term relief, he did make a significant discovery. He placed a pin that pulsed with my heartbeat and came to realize that my kicking was in direct sync with my missed heartbeat (about twice per minute). Are there any case studies relating the these things?

By the way, amazingly, the Acupuncturist was able to turn the RLS on and off completely while on his table, but was not able to bring that relief for any long term period away from the office.

Thomas R.

Medical Reply

here has never been any correlation with skipped (usually extra) heart beats and RLS or PLM (these are the leg kicks). However, anything is possible but RLS patients have been well studied and this has never been noted.

Sent: Thursday, August 21, 2008 10:51 AM
Subject: Muscle Spasm

I am on 1 1/2 tablets of pramipexole 0.088mg half in the afternoon and 1 about 9 pm. Because it causes severe insomnia I also take two 7.5 mg of zopiclone. I now have this twitching or jerking in my hands and shoulders and worse as I try and drift off to sleep it happens in my brain. I actually feel and hear a click and it completely stops me sleeping.

Have you any idea what this is and if I could take anything to stop it? I have tried codeine but it does not do anything.

Sue in the U.K.

Medical Reply

I am not sure what the twitching is due to but PLM (Periodic Limb Movements) are a reasonable possibility. However, these movements occur in the legs with or without the arms. If you don't have this twitching problem in your legs making the diagnosis of PLM would be very tough.

If this is not PLM then it might be very difficult to figure out. I have never heard of any other movement issues with the dopamine agonists (Mirapex or Requip) in RLS patients.

A Reply from Sue

Sent: Thursday, October 09, 2008 11:13 AM
Subject: No More Insomnia

I thought you might like some feedback regarding Mirapex and Requip. Having been on Mirapex and experienced quite severe insomnia on it, I eventually persuaded my Doctor to let me try Requip

I started on 1 tablet of the lowest dose about a month ago at about 6.30 pm and noticed straight away that I became quite drowsy within an hour of taking it. I now take Requip at 9 pm and go to bed at 10.30.

What a difference. I might wake up through the night and have a walk to the bathroom because of slight RLS but otherwise have a good nights sleep. ( I take a biscuit with it to stop any nausea although I don't think this is necessary anymore)

I am going to keep to this dosage for as long as I can as I fear upping the dose may eventually cause augmentation. If I have a particularly bad night I add a painkiller.

Just thought I would contribute something positive for a change from a very grateful sufferer for helping me to make this decision regarding my medication.

Sue in the UK

Medical Reply

You are right in that patients who are very happy with their treatment typically do not write but those who are having trouble seek us out.

Although Mirapex and Requip act on similar receptors and most patients find them fairly similar for RLS, there are quite a few who experience very different responses from these two drugs.

Sent: Saturday, August 23, 2008 1:13 AM
Subject: RLS and cessation of smoking

I have written to you before and have both your books at home.

In my country, The Netherlands, I am responsible for answering questions from RLS patients for the Dutch RLS Patients Board. Of course I always tell them that I am not a physician etc..

In the past a few people have written that once they stopped smoking RLS symptoms appeared, which is contrary to what research has found, I think. In your book you have written a paragraph on smoking and RLS, but I can't find anything on cessation of smoking and appearance of RLS symptoms. Could these be RLS mimics?

Can you give me your opinion on this?
Corrie A.

Medical Reply

There is no literature on smoking cessation and RLS. The only links we have between smoking and RLS are studies that show increased prevalence of RLS in smokers (this does not necessarily prove cause and effect).

It is possible that the stress of quitting smoking (increased anxiety) might induce an increase in RLS symptoms (but that is just my guess).

Sent: Sunday, August 24, 2008 1:47 AM
Subject: Mirapex and pregnancy?

I am just curious about Mirapex....does Mirapex safe for pregnant women?

Medical Reply

No. It is Category C.

Sent: Sunday, August 31, 2008 10:05 PM
Subject: Medication Change?

I have written before and really appreciate your helpful and speedy advice.

I am a long time sufferer of RLS - and have been on every conceivable medication during my years with RLS. Right now I am on Mirapex 0.25 mg. (3 tabs spread out over the evening and night) as well as Oxycodone 5 mg. (2 tabs. per. night). I am finding that this is not taking care of my RLS as I have breakthrough spells almost daily. In the past I have taken a drug holiday and found that to work well - however, my holiday drug was Permax and it is no longer available.

I would like to know what my best choice for a switch over drug would be. I have tried Requip, Neurontin, Sinemet and some others I can't even remember - but none worked as good as Mirapex. Right now I feel that Mirapex gives me insomnia and I feel that I am headed for augmentation.

Please suggest another drug you feel would work for me. I am seeing a new doctor in 7 days and I will show her your letter and your advice.

Rosemarie (70 years old) Canada

Medical Reply

It is difficult to give specific advice on complicated cases such as yours. It is often necessary to review your reactions to each drug and combinations of drugs (well beyond the scope of this site).

However, what may work best is likely a combination of Mirapex, oxycodone and an anti-seizure medication like Neurontin or Lyrica. It may take some trial and error to find the best combination.

Taking regular drug holidays from Mirapex is not a typical recommendation so it is difficult to advise you on this topic.

Sent: Monday, September 01, 2008 9:37 AM
Subject: RLS and Foot and Leg Cramps

I have recently started having RLS type symptoms in both legs, but in addition, I also have a lot of toe, foot and calve cramps. I do not see those described - is this a common part of RLS? I have a doctor appointment scheduled, but I could not get in until 6 weeks from today. Any advice or information would be very appreciated.

Beverley

Medical Reply

RLS and muscle cramps are both common conditions. Otherwise they are absolutely not related and must be treated separately.

Sent: Tuesday, September 02, 2008 2:05 AM
Subject: RLS

Had battery of neurological tests done approx 15 yrs ago and neurologist said I had neuropathy - gave me Elavil. 3 yrs ago he put me on Requip. Now I am taking 2 mg at night and .25 2x/day. I cannot sleep/rest, etc. I am up for hours during the night and the pain is excruciating. Hear that Tylenol PM and Advil / Aleve make the symptoms of RLS worse. I have urinary incontinence and recently had a few episodes of fecal incontinence.

Other than this severe RLS, I am a healthy 60 year old. Is there anything new I can take to alleviate the pain and sleepless nights? I will be taking a very lengthy plane trip in a few months and I am so worried about sitting for so many hours. I know my iron level is a little low. Can I take over the counter iron and B-12?

Kari

Medical Reply

You should not take iron without the supervision of a doctor (who should be monitoring your iron/ferritin levels). B12 does not help RLS.

Pure Tylenol, Advil or Aleve does not bother RLS but the PM part (which is Benadryl) does worsen RLS.

Painkillers (opioids, tramadol) would be excellent choices for controlling your RLS and pain symptoms.

Sent: Tuesday, September 02, 2008 9:53 AM
Subject: RLS?

I'm now 49 and have been suffering from an inability to sit still and the need to use (really fatigue) muscles for as long as I can remember with worsening symptoms as I get older. Although the symptoms described by others (e.g., creepy, crawly, tickling feeling) are consistent with mine, I became unconvinced that it is RLS because these symptoms extend beyond my legs (calves and thighs) to my buttock, arm, waist, and stomach muscles - essentially every muscle group I regularly workout with weights and aerobic exercise.

And contrary to usual RLS symptoms, I experience these symptoms all the day long and they are not worse in the evening/at bedtime, but this may be obscured by the fact that I take trazodone for sleep. My workout routine has been getting more and more intense over the years as it's become harder and harder to fatigue the muscles, but sometimes it seems my "RLS" is even worse after doing a very difficult workout.

These symptoms are very seriously effecting my job functioning as I am a researcher who needs to sit still to write, attend meetings, etc., and it not only profoundly effects my ability to concentrate, it makes me near suicidal when I'm not able to move around due to the intense discomfort and accompanying anxiety-like symptoms.

Most mornings I can get up to do a workout before going to work, but that not always the case and I've come to understand that I'm going to have a very difficult day if I miss it! I've tried vitamins and minerals (A, B, calcium, magnesium, and most recently potassium), but to no relief. I'm considering asking my PC for Neurontin (though am not sure he'd be comfortable prescribing it for this off-label use) - would you recommend this and are my symptoms consistent with RLS?

Melissa W.

Medical Reply

It is still possible that you have RLS. When RLS becomes more severe, it can occur all day (with the loss of nighttime worsening) and spread to other body parts. If your symptoms occur only at rest and get better with movement, then RLS is most likely the correct diagnosis.

First line treatment for RLS are the dopamine agonists, Requip or Mirapex. Neurontin or painkillers may be added or used instead if there are difficulties using the dopamine agonists.

Sent: Tuesday, September 02, 2008 12:50 PM
Subject: RLS in the daytime

I have been diagnosed with RLS, I take Requip, which works fine and puts me to sleep. But some nights it does try to creep through the Requip. My main problem is the daytime RLS, it's getting severely worse and some times I have problems driving home. Is their something to take, my doctor thinks I might have to go to a neurologist.

Mary

Medical Reply

You may need a higher dose of Requip (you don't mention the dose that you are currently taking) to take care of your nighttime RLS more consistently. Also, you may need additional doses of Requip to take care of your daytime RLS symptoms.

However, if the daytime RLS symptoms started within several months of starting (or increasing the dose) Requip, then you could be suffering from augmentation (worsening of RLS symptoms due to taking Requip) and then changing to another class of RLS medication may be more suitable.

Sent: Sunday, September 07, 2008 12:20 PM
Subject: RLS

I am a 61 year old lady with severe restless legs syndrome. I have suffered with restless legs since I was in my twenties, but never bad enough to need treatment, until I retired then they got worse and worse. Then the pain started a deep ache sometimes in my foot or ankle or calf. My father suffered from restless legs and my brother has it too. So it seems heredity plays a strong role.

I saw an article in a paper about ropinirole and saw my doctor. He started me on them but they did not agree with me when I had to increase the dose I had side effects and the lowest dose had no effect. Then I read about Mirapex and tried them on the lowest dose. They worked great and I thought I had found a magic pill. Then after about 8 or 9 months they started not to work.

My doctor said to increase the dose but again that didn't work. I started to have breathing problems not all the time but intermittent. My doctor told me to stay at the lowest dose which I did but again I had breathing problems. One evening an ambulance come out to check me over and all seemed well they couldn't find anything wrong. Breathing problems are not listed as a side effect so this was puzzling. I have now stopped Mirapex [pramipexole] and have had no more breathing problems.

My doctor then gave me codeine but these just made me drowsy during the day even on the lowest dose of 15 mg. It seems my body is just sensitive to drugs. So now I am not taking anything I am too scared to try anything else. I have just come across a website in your country called The RLS Rebel and have just started to follow some of the suggestions given there. I am hoping this will work for me as prescription drugs seem out of the question. Just four hours sleep would be nice as against one or two. I I live in Great Britain. You have a great website.

Irene P.

Medical Reply

Requip (ropinirole) and Mirapex are the drugs of choice for RLS but when adverse reactions occur (even the breathing problem which is very unusual for this drug), other drugs must then be considered.

Although codeine made you drowsy, other opioids (hydrocodone for example) may or may not work better. Another good choice would be tramadol as it is a different class of drug.

Neurontin is also a good choice but may cause some sleepiness in susceptible individuals.

A Reply from Irene P.

Sent: Sunday, September 14, 2008 8:54 AM
Subject: RLS ferritin levels pramipexole

I contacted you recently about my severe restless legs and the problems I have in taking prescription drugs. I tried to sleep without taking anything and was awake almost all night apart from one hour sleep when I took two Tylenol then after having to wait four hours before I could take two more had another hours sleep. This was unbearable the next day I was so tired. I recently asked my doctor for a blood test to see what my ferritin levels were and they were at 25. Of course my doctor said that's fine and normal, so I pointed out that they should be at about 45 for people with restless legs because they can sometimes get relief from that level, so I am now on iron tablets to try to raise the level.

My question about ferritin levels is what sort of relief if any do you get, does it mean the symptoms of restless legs is less severe? I seem to be having to tell my doctors (because you don't always see the same one) what they should be trying to do for me. They don't seem to be very well informed with the subject of restless legs and some say there is nothing else we can give you. What do they think I should do if they can't help me, go away and go insane with lack of sleep.

I told you of the problems I had with pramipexole and had stopped taking them. Now my doctor has said to try them again so with a deep breath I tried one the lowest dose (0.125 mg) on Friday night, I slept all night, great but the next day I was lightheaded and by the afternoon had fatigue.

So I decided on Saturday night to try to half the tablet which was difficult to do and took about three quarters of it. I slept pretty well. Sunday was not as bad as Saturday but felt fatigue again in afternoon. I don't remember having these problems the first time round in taking them as I thought I had found a magic pill and had no side effects until much later in taking them. Tonight I am going to try to cut the tablet so it is nearer to half of one and see what happens.

Can there be something wrong with my system that seems unable to cope with any drugs even at the lowest dose because I am losing all hope here in finding something suitable? Reading other peoples letters they seem to be able to take quite high doses of different drugs, I know everybody is not the same but have you come across someone like me who has these problems in taking drugs.

Irene P. in Great Britain.

Medical Reply

There is an incredible variation in how people tolerate medication. Patients with Parkinson's disease take and usually tolerate doses of Mirapex (pramipexole) that are over 50 times higher than the .125 mg that causes your trouble. That is just the way your body reacts and there is really nothing you can do but avoid the medication (unless the 1/2 tablet works which is possible).

As I wrote in my previous email, you should consider tramadol, hydrocodone or other painkillers or Neurontin which should easily take care of your RLS symptoms without causing trouble (although you may have to try a few to see which works best for you).

A Reply from Irene P.

Sent: Thursday, September 25, 2008 6:26 AM
Subject: RLS and tramadol

I have been in touch with you recently trying to find something suitable to take for my restless legs. You recommended tramadol as something to try, and I have been doing this. At first I took one 50mg before bedtime, that didn't work properly so I increased it to two as recommended by my doctor. This was fine for five days then and the mild sleepiness wore off.

Then I started getting extremely bad excess gas in my stomach which lasted all day which I took something to put that right. I also went back to one 50mg at bedtime and didn't have any more gas. But now for some reason by taking one tablet it doesn't kick in until four or five o'clock in the morning.

This morning it was about six o'clock, thus not getting enough sleep and the sleepiness during the day is back. Any ideas why this should be cause as I have said before trying to find anything else is becoming difficult.

Irene P in the UK.

Medical Reply

Tramadol typically starts working in about 30-60 minutes so it is very difficult to explain your response to this drug. You may consider hydrocodone or oxycodone and see if those opioids work better for you.

Neurontin is another choice and even a trial of Requip may be reasonable despite your previous strange reaction to its cousin dopamine agonist, Mirapex.

A Reply from Irene P.

Sent: Saturday, October 04, 2008 5:58 AM
Subject: RLS and Oramorph (morphine)

You might remember I have side effects on all I have tried so far always the same which is they make me very drowsy the next day which stays with me all day. Have been yet again back to my doctor, and he has put me on Oramorph (oral solution) I took the lowest amount possible last night of 2.5 ml which did help a bit and had more sleep than I usually can get.

However once again this morning I have the drowsy effect and it looks like to stay with me all day. I don't know whether to carry on with this medication because I feel by the time I take the next dosage I will be even more drowsy the following morning. My doctor has said we are running out of options, and I am beginning to think so too, as all medication for restless legs has a sedative effect which I have trouble with.

Looking at your treatment page I noticed that you have Inderal as a possible choice. I remember taking half Inderal about eight years ago for acute anxiety, I know that it is a beta blocker, but cant remember what side effects it has if any . At the time of taking it my legs were not as bad as they are now, so was wondering if this was maybe worth trying or maybe not strong enough to make any difference.

I am beginning to think I am one of the percentage that cannot be helped,
Irene P. in the UK.

Medical Reply

Typically, Inderal has few side effects. However, you have already displayed very unusual reactions to medications so anything is possible. The evidence for Inderal's benefit for RLS is very flimsy so I would not hope to hard for this medication to help you anyway.

A Reply from Irene P.

Sent: Monday, October 27, 2008 1:02 PM
Subject: RLS and Oramorph (morphine)

I wrote to you about taking Oramorph and the drowsy effects I was getting. I have not given up on this drug yet! The drowsy effect was gone the following day so I carried on. Every second day I was increasing it by 2.5 ml hoping to stop the drowsy effect and get better relief which seem to work then I got to 10ml which was the limit my doctor prescribed.

For two days I was fine then the third day I woke up really drowsy. So I started to go back down a dose each night until I got to 2.5 ml again. Now I am slowly increasing the dose again and back to 5ml, this dosage worked after three nights but again drowsy today. If I stay on 5ml which I think is the right amount will the drowsy effect wear off in time, or is it a side effect which will stay.

Irene P. in the UK.

Medical Reply

Side effects are difficult to predict. The drowsiness may go away or be stubborn and stay. Only time will tell.

Sent: Thursday, September 11, 2008 6:24 AM
Subject: RLS worse despite Requip?

I am desperately looking for help for my 73 year old father. he has suffered severe RLS most of his life that continues to get worse with age. he has recently been prescribed insulin shots for his diabetes approximately 6 weeks ago. now his RLS is completely out of control. he has now been prescribed three, 1mg Mirapex a day and even this will not control the RLS.

He is extremely sleep deprived and tired. He can't even sit down during the day. I also suffer RLS and understand the physical and mental stress he is going thru. do you know any information, studies done, clinical trials, anything about the interactions of RLS and insulin.

Rita L.

Medical Reply

Although RLS is more common in diabetic patients, there is no known link between RLS and insulin.

It is much more likely that your father's RLS is just getting worse due to getting older. As he already on very high doses of Mirapex (and should not go any higher), he should consider adding (or maybe even changing the Mirapex to) opioids and/or anti-seizure medication (Neurontin, Lyrica, etc.). These medications should be able to take care of his RLS.

Sent: Thursday, September 11, 2008 6:46 PM
Subject: Requip the problem?

I’ve enjoyed your website. I’ve been taking Requip for 18 or more months. I discovered I had RLS around the same time, I found out I was extremely anemic; just to the point where most folks receive a transfusion. Not only was my hemoglobin low, my ferritin was in the single digits. I’ve been scoped and scanned every possible way and the cause of the anemia was never discovered. I’ve also been tested for iron absorption and there was no problem there.

I’ve been taking mega-doses of iron and my hemoglobin is good now, around 13.9. So far my ferritin has gotten to only 40. My RLS is brutal. I manage to sleep well on 1 mg of Requip. My main problem is daytime and early evening. Sometimes, I can’t sit and work on the computer or drive long on trips without wanting to scream. Sometimes, it starts in the morning and interferes with my meditation. I can rarely read anymore because I’m either miserable with the RLS or sleepy enough to finally rest after taking Requip. It also affects my arms and I feel tension in my abdomen and jaws.

Could the Requip be causing daytime symptoms and could I have become dependent on it for nighttime rest. I wondered if I could have started the RLS because of the anemia and now am having trouble because of the drug itself. I’ve considered going through withdrawal, but would only want to go through the misery of no sleep if I knew for how long and if I could come out on the other side of it symptom free.

 Any experience in this area?
Anne C.

Medical Reply

Often, if the ferritin level can be raised above 50, the RLS symptoms will get better. However, it is much easier to bring ferritin levels up from single digits to around 25-40 than to get it above that range (the more iron you take it and raise the iron stores the less the body tries to hold on to the oral iron that your are taking). It often takes intravenous infusions of iron to raise iron levels (ferritin levels measure the iron stores more accurately than most other tests) sufficiently to completely alleviate RLS symptoms.

The Requip could be causing worsening of your RLS (called augmentation). If the spread of RLS symptoms and earlier onset of symptoms occurred after starting (usually several weeks to months) the Requip (or increasing the dose), then it is likely that you are experiencing augmentation from Requip. If that is the case, then stopping the medication and substituting an opioid would be very helpful. After a week or 2 you might considering restarting Requip at a lower dose or changing to a low dose of Mirapex. However, it may be wiser to just stay off the dopamine agonists and just use opioids or anti-seizure medication.

If that is not the case, then taking another one or 3 earlier doses of Requip should relieve your RLS symptoms that occur earlier in the day.

A Reply from Anne C.

Sent: Friday, September 12, 2008 1:54 PM
Subject: RE: Requip the problem?

It is comforting to have an expert who understands RLS to consult. My doctor did mention intravenous infusions although he said he’s never done it before when the hemoglobin level is good. Do you think the RLS could be “cured” if I can get my ferritin level up?

In the meantime, what are some examples of a good opioid? I tried .5 mg of clonazepam. I might as well have drank a glass of water. It had no effect on the RLS. Also, what are anti-seizure medications?

Have you heard of salt being the cause of RLS?

Anne C.

Medical Reply

Typically, intravenous iron infusions are not done when the hemoglobin levels are near or within the normal range. However, there is a very good chance that these infusions may help your RLS (just make sure that your doctor keeps the serum ferritin levels below 200). This does not cure RLS but rather puts it into hibernation for about 6 months to 2 years. We are not really sure why this iron infusion does not last longer but it appears that many RLS patients lose iron faster than those without RLS and therefore need to be "tanked up" more often.

Clonazepam is not an opioid but is rather a benzodiazepine (and is not on my list of RLS medications). The opioids include drugs like Vicodin, oxycodone, methadone, etc. and the anti-seizure medications include Neurontin, Lyrica, etc. (check with our RLS Treatment Page for more information).

Although there are many theories about the cause of RLS (none of them yet close to being proven), I have never heard of salt being amongst them.

A Reply from Anne C.

Sent: Saturday, September 13, 2008 2:34 PM
Subject: RE: Requip the problem?

Thank you so much for the information. Just one more question. Do you think it is possible that I contracted RLS when I became anemic and now am reliant or addicted to Requip. Any other words, now that my hemoglobin is up, is it possible that my RLS could go away if I get off of Requip?

Anne C.

Medical Reply

Anemia may trigger RLS or worsen it, but likely does not cause it as the vast majority of anemic people do not have RLS. It is possible that if you can get your serum ferritin level up (much more important than hemoglobin) enough that the RLS symptoms will go away (and therefore you would not need Requip) but it is likely that you will not be able to do that without further iron infusions (as stated before it is very difficult to get iron/ferritin levels to adequate levels with oral iron).

Sent: Wednesday, September 17, 2008 5:50 PM
Subject: RLS help

I've had restless legs since childhood. I'm now 53. I took Sinemet first about six year ago. augmented with in the first year. Switched to Mirapex. It worked well for about three years then I started augmenting on it. I've tried Neurontin and Lyrica. Both made me so sleepy during the day it was dangerous for me to drive. This was on the lowest possible dose.

Finally I asked my neurologist for oxycodone. I take two 5mg doses. One when I get in from work the other at bedtime. I also take one half of a 1mg tablet of Ativan. I have been off Mirapex for 3 weeks. The oxycodone worked at first but now I can't sleep. I wake up all during the night restless. The restlessness is not as intense as it was with Mirapex, but it is enough to keep me awake.

What else can I do?
Deb O.

Medical Reply

There are a few alternatives. You might want to add Mirapex again but at a smaller dose (some experts believe that the augmentation problem may be somewhat dose related) or you could add Requip but keep it at a low dose.

Another choice would be to change the oxycodone to methadone which tends (in most RLS patients) to work better.

Sent: Thursday, September 18, 2008 3:37 AM
Subject: Mirapex and RLS

I am a school teacher from Rural Virginia, and have been trying to wean off of Mirapex for over a year. I have been taking 1.5 mg - 2.0 mg at bedtime for several years, and have suffered the very worst of side-effects from this drug; gambling, overeating, overspending in every way. The doctors that my insurance has allowed me to see know little to nothing about RLS or the side effects of Mirapex, and so the attempts I have made to come off of Mirapex have failed miserably, and I have continued the take the Mirapex so that I can continue working. My RLS is severe, and debilitating.

Through my own research online, I have begun to try weaning off the drug myself. I have been taking .75 mg of Mirapex with a magnesium Oxide tablet at 6PM, and a trazodone at bedtime. Sometimes I have to take another magnesium, or another half of trazodone, and wait for it to "kick in" so that I can sleep. I have been doing this for four days now, and it is the first time that I have been able to sleep on a lower dosage of Mirapex.

The problem that I am having is that I am waking up so stiff and so sore that I can hardly move. Even my fingers hurt, and every movement brings tears to my eyes. I loosen up a bit after about an hour, but the stiffness and soreness remains. Could this be a symptom from reducing the Mirapex, or from the magnesium? I don't think it's the trazodone, because I have taken that before without adverse side effects.

I see a new neurologist next week, and my fear is that he will not know how to manage my symptoms any more than the other doctor's I've seen have . . . I need to get off this drug for good . . . and I need to be able to work and function. I would appreciate any information that you can provide.

Mary O'C.

Medical Reply

Magnesium has been explored for treating RLS but has not really turned out to be helpful (however, more studies are necessary to prove this definitively). Therefore, I am not sure why (or if) it is helping you (it is likely that the sedating effects of trazodone are simply knocking you out so that the RLS symptoms do not bother you).

I cannot explain the musculo-skeletal symptoms that you are experiencing as they are not typically ones that occur with lowering Mirapex or taking trazodone or magnesium.

However, there is a very simple way to get off Mirapex (which is the way most experts do it). We simply add a potent opioid (oxycodone or methadone are typically used) to cover the withdrawal effects (extreme worsening of RLS for a week or so). You may then have to stay on the opioid (but at a lower dose). For severe cases we may add an anti-seizure drug (Neurontin or Lyrica) which may help reduce the dose of the opioid.

Sent: Thursday, September 18, 2008 9:17 AM
Subject: RLS and magnesium and tryptophan?

I have had RLS all my life, even as a child, but at it's worst I could control it by taking aspirin. About 2 years ago I began taking statin drugs for cholesterol, more as a preventative. After about 6 months I quit taking it, but I did notice a great increase in my RLS Symptoms. Since that time I have done some research and it appears that the nerves are damaged by that particular drug and the damage is irreversible.

I now have RLS 24 hours a day, not only my legs, but also my arms and hands. I have tried Mirapex, but it didn't work very well. I now take Requip, but I worry about over dosing because I have to take at least 10mg a day - 5 in a.m. and 5 in p.m. Some days I feel like I need to take more than that. I also take several supplements - magnesium and tryptophan.

At any rate, I am really miserable. I can't sit to read , watch TV, sew or anything else. Most days I spend considerable time on my tread mill just to stop the RLS for a few min. I find that most Doctors really don't know very much about this.

Any help you can give me will be appreciated.

Anne B.

Medical Reply

Although statin drugs can cause muscle pain (they do not cause nerve damage or problems), the problem is typically reversible upon stopping the statin drug. There is also no known link between statin drugs and RLS, which means that something else likely worsened your RLS.

Magnesium and tryptophan do not help RLS. Your dose of Requip is not that high (I assume that you are taking .5 mg twice daily, not 5 mg). For severe RLS cases, we often go to 1-2 mg three times daily. If you are concerned about taking higher doses of Requip, then adding a drug such as Neurontin or Lyrica may be quite helpful.

Sent: Friday, September 19, 2008 4:29 PM
Subject: RLS

I have for a long time had what I call itchy feet. The bottoms of my feet drive me insane with tingling and I cannot help but scratch which makes them raw and sore. After many doctor visits the only thing that helped was Prednisone and finally a Dermatologist said to try Neurontin. That worked!!! But I had a reaction to the medication and broke out with blisters....ON THE BOTTOM OF MY FEET!

I tried many other medications before a Neurologist said it sounds like RLS and had me try Mirapex. The best relief for 2 months. I felt normal again, but then it started tingling so I switched to Requip Extended Day 2 mg. Well now I am up to 3 of those a day with no luck so far.

Going nuts with tingling feet!!!!!!

Gail D.
Charlotte NC

Medical Reply

For your problem to be RLS you MUST have and urge to move the affected body part and moving should bring relief. Getting relief from Mirapex or Requip is not adequate proof that you have RLS unless you meet most if not all the 4 RLS criteria below.

To determine whether or not your symptoms are compatible with a diagnosis of RLS read the 4 diagnostic criteria.

Sent: Wednesday, September 24, 2008 3:51 PM
Subject: RLS and Permax?

I have had RLS for some 8 years now and spent a great deal of time as a guinea pig being given various medications to try. I finally got fed up with this as in an eight week period had about 20 hours sleep, while trying to also work full time. I insisted on a referral to a neurosurgeon. My first remark to him was please tell me what is wrong with me and fix it before I buy a chain saw and chop my legs off. This may sound drastic, but I was desperate. The neurosurgeon told me what caused the RLS and that there is no known cure, but could give me a medication he has prescribed for other patients and it worked.

I was put on Permax  .25 mg per night, which took about 2 weeks to kick in. I am now taking 2 tablets and have to take these before 6.30 pm  or I am up all night. I now wake between midnight and 2 am and have to take a further tablet or no more sleep. I have a GP appt. next week to try and get some other medication that will work as I feel my system has become immune to Permax. 

Do you have any suggestions on what I could ask for. I am quite desperate for something that will give me a good nights sleep and enable me to function during the day without feeling tired all the time.

Zoe

Medical Reply

Tolerance can occur with this drug but often it may just be that something else is causing your RLS to be worse so that you need more medication. Here is the USA, Permax has been withdrawn from the market due to problems with heart valve damage. Your dose of Permax is quite high which further increases the risk of problems (tolerance, augmentation, etc.).

There tends to be less problems with tolerance when using the newer (and safer drugs as they do not cause heart valve damage) dopamine agonists, Mirapex and Requip. Changing to one of these may be helpful.

Other choices include adding or changing to painkillers or anti-seizure medications.

Sent: Wednesday, September 24, 2008 3:56 PM
Subject: Does lorazepam (Ativan) lose effectiveness?

I have been taking Lorazepam 2 mg at bedtime, and sometimes an extra 1 mg in the middle of the night, for RLS symptoms for about a year. It worked well until the last few months, and now it doesn't seem to be working as well as it did at first.

Could I be building up a tolerance to it? I found one internet site that said it was only effective for about 6 months, but several others didn't mention a time period. Should I be looking for something else?

Sleepless Sue

Medical Reply

Lorazepam (Ativan) and other benzodiazepines (drugs in the Valium family of sedatives) do have a tendency to cause tolerance (and dependence). The time that it takes this to happen varies very widely depending upon the person (and we do not really understand which traits help or hinder this) and dose of drug. Tolerance can develop within a few months of daily use or not appear for 20 years.

Your dose of lorazepam is quite high, so tolerance is something that we would expect to occur with daily use. Lorazepam (and other sedatives) do not generally treat RLS symptoms but rather help patients get to sleep (and of course, when you are asleep you do not experience any RLS). It is usually much better to treat RLS symptoms with a medication that actually relieves the symptoms and then use a very small dose of a safer sleeping (such as a non-benzodiazepine like Lunesta or Ambien) if necessary.

Sent: Saturday, September 27, 2008 1:50 AM
Subject: RLS and binge eating?

My RLS has been treated for years with Mirapex. I take .5 mg early afternoon and at bedtime. I have been on Lexapro 10 mg for about 3 months. The last 8 or 10 months I've had a problem with binge eating.

Do you think the binge eating could be related to the Mirapex? The last couple months my restless legs have been worse also.

Colleen S.

Medical Reply

It is certainly possible that your binge eating may be due to the Mirapex especially as you are on a reasonably high dose. However, it would be more likely for you to develop the binge eating within months of starting your current dose of Mirapex rather than years later.

The Lexapro is most likely responsible for the increase in your RLS symptoms. Wellbutrin would be a better choice for any depression/anxiety problem (if it works for you) as it does not worsen RLS.

Sent: Monday, September 29, 2008 5:30 AM
Subject: RLS Causes and Factors

Having suffered with RLS for many years and thankful to find treatment for the condition, I am still puzzled on why the outbreaks are sometimes non-existent all the way to extreme. Currently I take .25 mg of Mirapex and 5 mg (sometimes 10 mg) Oxycodone each evening. There have been times when there are no symptoms but I take the medication anyway.

There are times when RLS starts before I even take my medication. There are times when the symptoms are so severe that I have to take a second Oxycodone. And there are times when the symptoms seem to cover every inch of my body and nothing helps. Are there other factors at play as to why some days are better than others? Could changes in diet, weather, stress, etc. help explain good days and bad days?

Obviously if there are other factors at play which contribute to the severity of RLS I would do everything possible to avoid or at least modify my behavior. So is there any research along those lines?

Jim D.

Medical Reply

Unfortunately, virtually no research has been done regarding day to day fluctuations in RLS symptom severity. Some patients do note a difference (usually worsening) with certain food (often refined carbohydrates) but this seem to occur in a very small minority of RLS sufferers. The fluctuations may be similar to back pain which does vary with activity, stress and likely many other factors that are beyond our comprehension.

Sent: Monday, September 29, 2008 10:08 AM
Subject: RLS relief from Nortriptyline drug

I'm writing this for my wife. She's recently learned from a friend who has Restless Leg Syndrome (RLS) as bad as she does that her friend has found continual relief from the RLS symptoms with the drug Nortriptyline, taken 1-4 times per day. Her friend claims that the drug has completely relieved her RLS problems and that she has been able to sleep through the night since beginning the medication.

My wife is currently taking Requip sporadically--in anticipation of when she would have to be sitting for a long time (a concert, theater show, or flying), or when she knows she must get some sleep because of an early appointment the next day. She is up almost every night for several hours walking around until the RLS finally subsides to the point that she can get back to sleep. Then, she will sleep until almost noon.

She was introduced to Requip through a drug study at Stanford University to study the effects of a long-lasting Requip. She got immediate long-lasting relief of her RLS symptoms at low doses of the long-lasting Requip, but the drug study required increasing the dosage until it no longer became effective (and other problems started).

Then, the drug was stopped "cold turkey" and she spent a sleepless 72 hours with continuous RLS symptoms--at which time I finally convinced her to go Emergency. The Emergency Room Doctor finally prescribed Requip to help alleviate her symptoms and sent us home (after taking the Requip, the symptoms finally subsided and she slept almost continually for about 2 days).

Since that incident, she began taking Requip on a regular basis every night, but it got to the point that the RLS symptoms were coming more frequently (earlier in the day) and coming at times that she had normally never had a problem (like working at the computer). It got to the point that she was taking the Requip several times a day just to be able to make it through the day (and still not getting a consistent good night's sleep).

She is 64 years old, always upbeat, does not have any depression that I know of, is on medications to control high blood pressure, and is about 50 pounds overweight. Do you know of any reason why she should not consider taking the drug Nortriptyline to control her RLS so she can finally get a consistent "good night's sleep"? I have not read any studies that have targeted RLS symptoms with the drug.

Harold M.,
A concerned husband

Medical Reply

One must always be careful when taking anecdotal advice even from patients who have benefited from a treatment (especially when the treatment has never been tested). Although some experts have suggested that nortriptyline may not worsen RLS, it is actually in a class of of medication that typically worsens RLS (antidepressants).


Your wife's friend may have some unique reaction to nortriptyline that lets this drug miraculously help her RLS but that has rarely been the case with other RLS patients. In fact, I would worry much more that the drug would actually exacerbate your wife's RLS. It is possible that the sedating effects of nortriptyline may be helping your wife's friend sleep but that can be accomplished with newer and safer sleeping drugs.

Sent: Monday, September 29, 2008 3:59 PM
Subject: Addiction to Vicodin?

I have had RLS almost all of my life and have been through all of the know medications that are prescribed. They have all stopped working and now I am only on vitamins and Vicodin and Cymbalta. Without Cymbalta I can't control my emotions because I am so exhausted from very little sleep.

I take the lowest dosage of Vicodin about 1PM and again at 6 PM. I am having a lot of nervousness and only the Vicodin will calm me. Am I addicted to this pain medication now. Sometimes I have to take 3 a day depending on traveling.

I have pain that feels like needles are sticking my legs and in a vice grip all the time. I will be seeing my doctor again the 23rd. I feel if I don't get some control on RLS my body is going to stop functioning. I am now 68 years old and I know it is only going to get worse as I age.

TW

Medical Reply

It is very unlikely (but of course anything is possible) that your relatively low dose of Vicodin is causing addiction (especially if you have no previous history of drug addiction). It is much more likely that your RLS is very dependent on this very potent RLS medication and without it your anxiety and RLS levels increase dramatically.

The Cymbalta may be worsening the RLS and perhaps a switch to the more RLS antidepressant/anxiety medication Wellbutrin may be helpful. In addition, a sleeping pill such as Ambien or Lunesta may allow you to sleep much better and feel more rested during the day.

Sent: Saturday, October 04, 2008 11:41 AM
Subject: RLS and weight gain?

I just discovered your board after doing a search on Mirapex and weight gain. I didn't see anything specific to my problem so thought I would ask.

I am taking .25 mg of Mirapex before bed. Mostly my symptoms are at night when I am still but occasionally I have daytime symptoms when I am trapped such as driving, behind a desk, etc. I have found I cannot take the Mirapex during the day as it puts me immediately to sleep.

I have gained 30 pounds in 2 years and it is really beginning to distress me. I am considering cutting my dosage in half or even trying to get by with Tylenol etc to see if that helps the weight problem. I sleep well initially but usually wake up after about 6 hours having to go to the bathroom and then can't fall back to sleep, I don't know if lack of sleep is causing the weight gain either.

The added weight also seems to aggravate the RLS such as when my pants rub my legs or feel too tight. I am having a really hard time feeling comfortable. This is not just a vanity issue, I recently bought a whole new wardrobe because of my weight and having to look professional at work and now have gained even more and can't afford to buy all new clothes every 2 months.

I tried Requip a couple of years ago and after the first couple of days it did nothing so I stopped taking it.

Anything you could suggest to treat the RLS and promote weight loss would be greatly appreciated. I am more than moderately active but not as active as I have been in the past. Also I eat constantly, even when my stomach doesn't feel empty. I can't seem to stop.

Debby D., age 41

Medical Reply

Mirapex has been associated with weight gain. In addition, it infrequently may be cause compulsive behavior, such as compulsive eating.

Requip may not have worked for you as it is only 1/2 to 1/4 as potent as Mirapex and you may need a higher dose (about 1 mg which you may not have reached with your previous attempt at the drug). It may work better or worse for you as it is similar (but different enough) to Mirapex.

Alternative would include Neurontin (which may cause sleepiness) or painkillers (which may actually be a good choice for you and quite safe if used in low dose properly).

Sent: Wednesday, October 08, 2008 5:36 AM
Subject: RLS linked to salt?

I have been reading about people who have been lowering their salt intake and it has helped with RLS. I just wanted to add my two cents. You all may know this already but I have read that this is true because salt depletes the bodies magnesium levels and that is what is causing the muscle twitching in some cases. So another thing you can do is take Magnesium supplements.

Randi R.

Medical Reply

There are lots of anecdotal reports of RLS sufferers benefiting from taking magnesium or lowering their salt intake. However, there are virtually no studies showing that increasing magnesium has any benefit and zero studies for salt intake affecting RLS. Despite occasional people benefiting from these efforts, there is really no reason to believe that they would work as the majority who adjust their salt or magnesium intake have NOT benefited. It is also likely that the few who do seem to benefit may be really experiencing the very potent placebo effect that is so common in RLS patients.

Of course, it would be nice to formally study salt and magnesium but so far the few research resources that are available have been focused on other more promising treatments.

Sent: Thursday, October 09, 2008 12:28 AM
Subject: RLS and barbiturates

I acquired RLS before diagnosis of Hepatitis C; then was prescribed plain Fiorinol for chronic tension headache related to the wait for treatment. To my surprise, both the RLS and my painful peripheral neuropathies responded well, the RLS completely quelled. A rational mechanism could be the GABA effects of barbiturate on the basal ganglia- especially the globus pallidus- which are implicated in many movement disorders. The diazepines (Valium etc) may be less reliable because of differing effects on C+ gating in nerve tissue.

One connection for unusual brain MRI and RLS could be brain hypermanganism, which is prevalent in metalworkers, and may also be frequent in hepatitis C patients. Manganese and ammonia are constituents of bile, which is often reduced in hepatitis; resulting in typical grayish "clay-like" stools. Disruption of manganese or ammonia can have significant cognitive and movement effects.

John H.

Medical Reply

The use of barbiturates for RLS have not been studied yet. However, enough RLS patients have used products that contain barbiturates (like Fiorinol) that any positive relationships (such as you have noted) would already have come to light. There is an incredible variation of responses to drugs in patients with RLS. Although most respond well to a few select categories of drugs, there are many individual responses to a lot of drugs that only seem to help a few patients.

As far as theories for why even the more successful drugs work, they are only theories and even the more popular theories may be completely wrong (or right). It is interesting to speculate about why some drugs may benefit RLS but we really have to learn more to verify whether these theories are correct. That also applies to ammonia or manganese which have yet to be linked to RLS in any fashion.

Sent: Thursday, October 09, 2008 7:46 PM
Subject: Interesting RLS case

I am a 24 year old male with a history of RLS since the age of 10. The RLS has been confirmed by a sleep study recently at the Cleveland Clinic. At a very young age it started off as intermittent but then has since progressed to the point where I experience the symptoms every night. Without medication I am unable to sleep for more than 4 hours a night. I will often get it in my arms and legs and would describe it as a creepy crawling sensation and the feeling of electricity pulsating through my arms and legs.

Medications I have tried include:

Requip - ..25-.5mg d/c after 1.5 years due to augmentation, went off for 3 months and restarted and experienced severe panic attacks due to dopamingeric effect.
Neurontin - went up to 2400mg at night and was experiencing rebound anxiety, at 600mg still experience this, if I go off Neurontin anxiety goes away.
Baclofen - 10mg causes drowsiness, also drowsiness at 5mg, caused insomnia at night.
Lyrica - 12.5mg caused excessive drowsiness during daytime and didn't help RLS.
Mirapex - .125mg caused excessive drowsiness during day, insomnia at night, and worsened RLS at night.
Trazodone - worsened RLS.

I am currently on 600mg of Neurontin but am experiencing rebound anxiety for half the day. If I go off of the Neurontin the anxiety goes away. Even 10 minutes of mild exercise in morning (e.g. light jog) can makes RLS worse at night unfortunately. I am considering the use of opioids. What drugs have you found to be effective long-term?

Does tolerance tend to occur resulting in need to increase dose for RLS? I'm a college student with ADHD so I require having a lot of attention in morning hours so how would that effect my attention in morning hours. Is there an issue of withdrawal during daytime hours?

Ryan T.

Medical Reply

Your case is actually not that unusual. You do have intolerance of more drugs than the average patient but there are patients with more drug problems than you. Many RLS patients notice that exercise (although usually more moderate to vigorous exercise) tends to worsen RLS and as RLS progresses, it often goes to the arms

Baclofen and trazodone generally do not do anything for RLS.

With your drug history, the best choice of drug would be the opioids or tramadol. Typically, most RLS patients tolerate these painkillers very well without attention problems, withdrawal reactions, tolerance/dependence concerns and needs to escalate the drug or long term problems. They of course must be monitored by a doctor who is familiar with their use but are otherwise very safe if used appropriately.

Sent: Thursday, October 09, 2008 8:29 PM
Subject: L-Dopa for RLS?

My kinesiologist muscle tested me for everything under the sun and the only thing that tested helpful for restless legs was L-Dopa. Do you now of any research regarding L-Dopa?

Medical Reply

I have no idea how anyone would be able to determine from any type of test the correct drug for a patient's RLS since no such test exists. However, it is much more likely that the kinesiologist simply looked up drugs used for RLS is a book (likely an outdated one as L-dopa is no longer one of the drugs of choice for RLS) and picked one randomly. L-dopa was one of the early drugs recommended for RLS (typically in the form of Sinemet which is a combination of L-dopa and carbidopa) but is no longer used due to a very high risk of augmentation (worsening of RLS due to taking the drug).

The drugs of choice are related dopamine drugs called Mirapex and Requip.

Sent: Thursday, October 09, 2008 9:31 PM
Subject: PLMD weight gain and children?

My 13 year old son has been "sleepy" and overweight his whole life. Previously diagnosed with narcolepsy, he now has a diagnosis of PLMD without RLS (based on three separate sleep studies). He is on clonidine (.1 mg) and Provigil (100 mg at morning and afternoon) and seems to be more alert and sleeping better.

What can we do about the weight gain, and how do we know if this drug regimen is working well enough?
 
Melanie B.

Medical Reply

Typically, the drugs that your son is taking are not associated with weight gain so it is difficult to explain that problem (it may be due to other non-related issues).

PLMD most often does not cause problems even with the arousal rate due to the PLM is mild to moderate. Even with high rates of PLM arousals (greater than 50 per hour), there is much controversy concerning whether there are sleep and daytime problems resulting from the leg kicks.

There is a simple way to follow the amount of PLM occurring. It is called actigraphy which is a simple monitor (band around the ankle) that can monitor the amount of leg movements occurring at night. However, as stated above, the correlation between the amount of leg kicks and real medical problems is tenuous.

Sent: Thursday, October 09, 2008 8:29 PM
Subject: L-Dopa

My kinesiologist muscle tested me for everything under the sun and the only thing that tested helpful for restless legs was L-Dopa. Do you  know of any research regarding L-Dopa?

Medical Reply

I have no idea how anyone would be able to determine from any type of test the correct drug for a patient's RLS since no such test exists. However, it is much more likely that the kinesiologist simply looked up drugs used for RLS is a book (likely an outdated one as L-dopa is no longer one of the drugs of choice for RLS) and picked one randomly.

L-dopa was one of the early drugs recommended for RLS (typically in the form of Sinemet which is a combination of L-dopa and carbidopa) but is no longer used due to a very high risk of augmentation (worsening of RLS due to taking the drug).

The drugs of choice are related dopamine drugs called Mirapex and Requip.

A Reply re: L-Dopa above

Sent: Friday, October 10, 2008 6:35 AM
Subject: Re: L-Dopa

I've tried Mirapex and it kept me awake at night. My kinesiologist is really good at diagnosing and fixing problems of all kinds. We have been looking for years for a solution for my RLS.

Muscle testing is a bit different. When the body finds something it needs it is immediately quite definitive to tester and testee.

Medical Reply

You are correct in saying that muscle testing is a bit different. It seems to be understood by just a handful of practitioners without any scientific literature backing it up. For modern medicine, we use the scientific method for proving that things work and this can be reproduced by anyone in the world by just following the protocol described in the published articles.

Muscle testing has never been studied by any scientifically proven methods nor published in peer reviewed journals that exert proper scrutiny of the submitted research (which is not always a perfect system but it is presently the best one that we have that can verify experimental data and results).

Until muscle testing passes those minimum requirements for valid research, we must relegate the field to other techniques that may use the placebo effect and anecdotal evidence to prove their worth. Remember, the drug Laetrile had thousands of adherents until multiple studies proved it to be quackery.

Sent: Saturday, October 11, 2008 8:24 AM
Subject: Trazodone, Requip, Celexa and RLS?

I started having serious trouble sleeping ten years ago and saw a Dr. who, through trial and error, eventually arrived at a combination of Trazodone (50mg) and Celexa (40mg) per night that allowed me to sleep deeply and not gain weight. During this time I became aware that the Celexa gave me or, as I later came to find, enhanced my tendency for RLS.

After my daughter was born five years ago I never resumed taking Celexa. Two years ago I had a sleep study done via a neurologist and was found to have RLS and sleep apnea. I was given a prescription for Lyrica and this, with the Trazodone nearly gave me a cardiac arrest. Thus the Lyrica was discontinued and Requip prescribed.

After taking Requip (.75 mg) and Trazodone (75-125 mg) and Klonopin (.125-.25mg) nightly for a year I find that I have back, hip and leg pain, and have gained considerable weight. I also feel exhausted most of the time. Recently, upon seeing my GP, I started Celexa again with the Trazodone and Requip and discontinued Klonopin. Now I feel the RLS intensely for a couple of hours each evening. On the plus side, I feel less pain, less tendency to visit the refrigerator and more energized in the day.

It is imperative that I take the weight off as I have spinal arthritis and for my general well-being so any combination of meds must not cause weight gain.

Would you have any advice for me?
Jane W

Medical Reply

It may be worthwhile considering the use of Wellbutrin (an antidepressant that does not worsen RLS) in place of Celexa. If the Wellbutrin works as well as Celexa (and this can only be determined by trying it), then you should do a lot better.

Sent: Sunday, October 12, 2008 12:22 AM
Subject: Severe RLS

I live in Sydney, Australia and have just been reading the questions and answers on this website with much interest. I am 62 years of age and have suffered with RLS before RLS was ever really given a name. It is a genetic problem - my father suffered with it and my brother also has it in a severe form. Over the years it has certainly worsened and it is not just a nighttime problem for me - my legs are a 24 hour a day issue.

I have taken various medications on and off over many years but started taking Repreve (same as Requip) about 2 years ago. I followed the gradual increase suggested then took a 2 mg tablet cut into 3 pieces and would take it morning, afternoon and night. After a while the effect lessened so the dose was taken up to 1 mg 3 times a day. This dose was reasonably effective but I still had periods where I suffered particularly when having to sit for any length of time.

My neurologist then suggested changing to Cabaser (long acting dopamine agonist which is generic cabergoline) as he was convinced that this medication would be better for me, even though it had reasonably hefty side effects with possible damage to heart valves, etc. I took Cabaser for a few months then my neurologist suggested changing to Sifrol (same as Mirapex) as this would hopefully be as effective with less possibility of the major side effects.

Since taking the Cabaser and also Sifrol I have encountered another huge problem - GAMBLING. I have never been a person to go to clubs and play the poker machines but the compulsion to do this has becoming very consuming and I have spent a considerable amount of money pursuing this. It has gotten to the stage that I need help and don't know what to do - I certainly can't keep going on. It is such a sad set of circumstances - I finally find a drug that has given me wonderful relief for my RLS but in the process it has created another terrible monster. Is there any other medication that I can take that will give me relief without creating such a destructive monster?

I have read where it has been suggested that Methadone is very successful in treating severe RLS - I would appreciate your comment on this and whether this is an approved form of treatment in Australia.

Dulcie B.
Blacktown, NSW, Sydney, Australia

Medical Reply

Unfortunately, compulsive behavior such as gambling is one of the side effects of dopamine agonists such as Cabaser (cabergoline), ropinirole (Repreve, Requip) and pramipexole (Sifrol, Mirapex). It occurs more commonly at the higher doses used for Parkinson's disease patients but still affects some at the lower RLS doses.

As such other medications such as the painkillers (opioids such as methadone or tramadol) or anticonvulsive medications (such as Neurontin or Lyrica) may be much better choices. None of the opioids (including methadone) are approved for RLS anywhere in the world so this is considered "off-label" treatment. That will usually be no significant impediment for doctors who are familiar with the use of these drugs for treating RLS but will put off the majority who are generally afraid to use this class of drug and know little about RLS and their use in RLS.

It may help to take some literature (check out website for many sources of credible medical literature) with you to help guide your doctor in this mode of therapy. The opioids typically relieve even very severe RLS symptoms.

The anticonvulsant drugs are also quite helpful but on their own may not always completely alleviate severe RLS symptoms. However, they may be very beneficial in combination with the opioids to keep the dose of the opioids at a lower level.

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