Sent: Monday, June 01, 2015 12:57 PM
Subject: RLS not staying better with Requip?
I have suffered from RLS my whole life. I just turned 50 and decided to talk to my new doctor about it. He prescribed Requip. Which I now take .5 mg around 8 at night. It was a miracle at first but after a few months it came back. My days were horrible, so I started taking .25 mg in the mornings. I do okay while I am working but by 5 pm it is back. I cannot watch TV or go to a movie. The nights are becoming bad again around 3 am. I take a sleeping pill with it but still manage to tear up my sheets after couple of months.
Am I not taking enough or is this not going to work for me ?
The issue is actually somewhat much more different than you
realize. You most likely have augmentation (a worsening of RLS from taking a
dopamine drug like Requip). Increasing the dose will provide temporary relief
but will increase the augmentation process that will require more and more
Requip to treat it.
Most doctors and specialists do not know how to treat this problem and will typically have their patients continue to increase the Requip dose. However, there is now a consensus paper written by several of us experts to guide doctors on how to take care of that awful condition.
It is available at : http://irlssg.org/augmentation/
Sent: Friday, June 07, 2013 3:32 PM
Subject: Omeprazole and RLS.
I hope you can help me. I am now in my 60's and have had RLS
nearly all my life. I am on ropinirole which does help. My doctor has prescribed
Omeprazole for heartburn and much to my distress, it is making my RLS much
worse. I have been up nearly all night and the ropinirole has not really helped.
I will have to see my doctor but am wondering if there is any other medication that I could suggest to him that would not aggravate my legs (and arms).
Sue M. in the UK.
Omeprazole (Prilosec is the brand name in the USA) does not typically worsen RLS. There may be another factor causing this problem. However, there are many other heartburn medications available and most all of them should not worsen RLS so just ask your doctor for another one.
A Reply from Sue
Sent: Tuesday, June 09, 2015 6:40 AM
Subject: RE: Omeprazole and RLS.
I have bee on Ropinirole for the past 4 years. Over the last 2 months I have managed to cut the dose down to .025mg at night. Mainly because I want to try a different type of medication. My doctor has just prescribed Lyrica but knows nothing about changing over from one type to another. Should I must stop the Ropinirole now I am on such a low dose or go cold turkey before starting Lyrica.
Sue M. in the UK.
There are several options to consider and discuss with your
Since you are now on a very low dose of ropinirole, you could just stay on that dose. If you still have significant RLS symptoms, then you could add Lyrica. We generally start Lyrica at 75 mg then increase (if needed) by 75 mg every 5-7 days until symptoms are controlled.
Alternatively, you could eliminate the ropinirole. At that low dose, you could just stop it or take 1/2 a pill for 1-2 weeks then stop the drug.
However, when stopping the ropinirole completely, you will experience a marked worsening of your RLS that can last from 2 weeks to 1-2 months.
Lyrica is not usually adequate for treating the temporary worsening of RLS that occurs when stopping ropinirole. Once you are over that withdrawal period, it is possible that Lyrica may be able to control your RLS symptoms.
A third choice is to switch to opioids but they are difficult to get in the UK. Furthermore, it is worth considering the above treatments before resorting to opioids (which typically work very well).
Sent: Thursday, June 11, 2015 12:05 AM
Subject: RLS/Norco question.
I have been seeing a sleep specialists for some time for multiple sleep issues, including RLS. He has me on Norco 10, 1 per day at bedtime for the RLS. I am seeing a total of 6 specialists plus my PCP!
I recently started seeing an internist PCP and would like him to take over meds from as many specialists as possible in an effort to "centralize" my healthcare...and cut down on doctor appointments. The problem is, he adamantly insists that Norco is not an approved med for RLS and he WILL NOT prescribe it. I have found tons online that says it is approved, plus it is prescribed by a sleep specialist for Christ's sake.
So here's the question. Is it possible to change a doctors mind on something like this? If so, how. Or should I just leave that one alone? I can't tell if he is a stickler for rules, or if he is one of those that just will not prescribe narcotics. Period.
(P.S. Norco was our last option. I tried everything else and none of it works. Yes, I tried the Mirapex and Requip as well.)
There are a few ďcorrectĒ answers to your question.
Norco which contains an opioid (hydrocodone) and acetaminophen (Tylenol) is not FDA approved for treating RLS. There are only 4 drugs that have been approved by the FDA for treating RLS which include 3 dopamine agonist drugs (Mirapex, Requip and Neupro) and one alpha-2-delta drug (Horizant). All the other drugs that many experts use to treat RLS are used ďoff labelĒ.
Although most RLS experts do use opioids, we donít use Norco since it contains acetaminophen (Tylenol) which does not help RLS and therefore adds risk (long term side effects of liver or kidney problems) without any benefit. We will therefore use the ďpureĒ opioids like oxycodone or methadone. Hydrocodone can be obtained in its ďpureĒ form from a compounding pharmacy but that can be expensive.
Since most general doctors are not that familiar with using the non-FDA approved treatments for RLS and are usually very uncomfortable prescribing opioids, it is not unreasonable for them not to prescribe opioids for RLS. You should stick with your sleep specialist (but you should discuss changing to an opioid that does not contain acetaminophen) unless you want to go doctor shopping to find a PCP who is comfortable prescribing opioids for RLS (which may take a lot of effort and time).
Sent: Saturday, June 13, 2015 1:56 PM
Subject: Advice needed
I have been trying to shift from Mirapex to Horizant and/or gabapentin for the past 6 weeks, due to problems with augmentation and sexual impulse control. I am in a confused state at present and don't trust my Maui doctors to know what is going on. I have your book and do a lot of searching on the RLS Org and Southern California RLS sites so I think I know more about RLS than they do, except of course that I am not a doctor and need one to guide me.
I have been on Mirapex for at least 12 years, usually with another drug to promote sleep. When I started to switch to another class of medications 6 weeks ago, I was using 1 mg per day. I have a lot of augmentation and I had experienced major sexual urges that I couldn't control and I have been a member of Sex Addicts Anonymous for 3 years.
As soon as I dropped to 0.5 mg, my obsessions and compulsions vanished overnight. Incredible.
My goal has been to switch to Gabapentin enacarbil (Horizant) but my pharmacist said she couldn't provide it to me without losing a lot of money. But she gave me a one month supply anyway, which allowed me to experiment with it. I have been completely off Mirapex for 4 grueling weeks. I took your book and some photocopied pages to my sleep specialist and tried to get him to prescribe an opioid for the transition period. He would only agree to Ultram. I am currently at a place when I unable to decrease the Ultram below 150 mg. I have gone all the way up to 1800 mg of gabapentin but still needed 150 mg of Ultram to get rid of the jangling feelings in my arms so that I can sleep. I smoked pot a few times late at night but that tended to exacerbate my symptoms, or at least made me more tuned into them.
Here are some other serious side effects that are occurring. First, I itch a lot all over my body. Second, I am often sleepy during the day, even on days where I get a decent night's sleep. I nod off, especially while in the car. Twice I have driven alone where I caught myself crossing the center line 3 or more times each occasion.
That is very scary. I have decided not to drive any more until these symptoms are relieved. Third I once got all loopy at night when I had taken these meds and have tripped, knocked over things while being in this state. I think that night included smoking the pot. Last night I took 1800 mg of gabapentin and 150 mg of Ultram but was not loopy.
I don't know what to do next. I really need your advice.
1. Am I over the withdrawal phase and simply needed an additional
strong med to use with gabapentin?
2. What do I do next? I was originally planning to reintroduce Mirapex at 0.25 mg level after three months, which I believe is enough time for my receptors to rebalance. If I stay on the present dosage of 1800 mg of gabapentin and 150 mg of Ultram, will my sleepiness symptoms largely go away in a few weeks?
3. I found Horizant to be a more predictable drug but I don't know if I can get the insurance company to cover it and I don't want to pay the full cost. What is the process to get the insurance company to agree? Does the doctor need to apply?
4. Is 150 mg of Ultram a worrisome dose level? Would I be better off with Methadone, with supplementing gabapentin or on it's own?
5. Should I try going higher than 1800 mg of gabapentin? if so , how high is safe?
6. If I do add back in a low dose of a dopamine agonist, Would it be better to use Requip, which used 15-20 years ago?
Although the impulse control issues are very dose dependent as
is the augmentation problem somewhat, going back onto any dopamine agonist drug
may put you back at high risk of augmentation recurring. My general advice is to
stay away from the short acting dopamine agonist drugs (Mirapex and Requip) but
you might consider Neupro (realizing that it could cause a reemergence of your
impulse control issues).
The main issue here is that you are dealing with augmentation and the gabapentin or Horizant are typically not equal to the task of handling that situation. I do not go higher than 1800 mg for Horizant but only 600 mg is the FDA approved dose which can make it difficult to get the higher doses approved. The next day drowsiness often gets better after 4 weeks but if it has persisted beyond 4 weeks, then it is less likely to resolve.
Getting the Horizant covered requires your doctor to do additional paperwork to the insurance company. Sometimes this takes several attempts at progressively higher administrative levels which is why many physicians are reluctant to undertake this process.
Ultram is a reasonable medication but we do try to keep the dose (for one dose) at a maximum of 100 mg. It can be taken every 6 hours, so higher daily doses are generally accepted when needed. However, it is not near as effect as the true opioids. An opioid such as oxycodone or methadone would probably resolve your RLS problems very quickly and allow you to take a much smaller dose of Horizant (which may then not cause side effects).
Several of us experts have just published a white paper on how to treat augmentation on the IRLSSG website at:
You and your doctor can read this paper and hopefully follow the recommendations.
A Reply from Richard
Sent: Tuesday, August 18, 2015 6:17 PM
Subject: Re: Advice needed
I saw a good neurologist over in Honolulu in July and he recommended I try the Neupro patch. At first I liked the patch. I have since been on 1 mg of Neupro for one month and the compulsive sexual urges have returned, as you said they might. Although I have been using 50 mg of Requip at night because the Horizant/Neupro/Ultram regimen shown below wasn't enough. Every afternoon I get extremely sleepy at some point followed soon after by WED symptoms. I usually take a 50 mg Ultram and wait for up to an hour for the symptoms to abate. Do you think that is the Horizant? If so it doesn't bode well for taking a double does of Horizant, assuming I can get my insurance to pay for this.
5:30 - 7 pm 600 mg of Horizant
6 - 8 pm replace 1 mg Neupro patch
8 - 9 pm 50 mg Ultram
10:00 pm 50 mg of Requip
11 - 12 midnight fall asleep watching TV
The Honolulu neurologist recommended a Maui neurologist but I can't get in to see her until Sept 10. That is too far off considering the discomfort I am having with the impulses. What are some options I should consider?
Since the sexual compulsions have returned with Neupro, it is
clearly best that you completely avoid dopamine agonists.
You are correct that the most likely explanation for your next day sleepiness is the Horizant so increasing the dose may be quite problematic. You could switch to Lyrica which is much shorter acting (so it should not hangover the next day) but you may have problems getting insurance coverage for Lyrica as it is not FDA approved for RLS.
Typically at this point, I would switch my patient to a potent opioid (like methadone or oxycodone) which may obviate the need for dopamine agonists and even Horizant.
Sent: Sunday, June 21, 2015 8:07 PM
Subject: 12 years of RLS and doing poorly on Sinemet?
I have been taking Sinemet for 12 years. I now take 5 pills at night. This no longer helps. I am miserable. I have severe lower back pain and circulation problems I attribute to the lower back spasms. I am in pain everyday. Lower back, legs and ankles. Exercise hurts! I believe RLS is the root of my ailments. I need a new direction and don't know where to start. I am miserable. The meds make me grumpy and irritable. My memory is vague. I have a neurologist and he's receptive, but I want to be educated when I talk to him.
I am wondering about opiates. I do not want to become addicted. I attribute my lack of sleep to every detrimental health issue I have....I cannot meditate to relive stress because I cant sit still. I take two to three pills before I go to the dentist or get a massage.
Any suggestions on where to begin? I have cardiomyopathy. It is not severe and my ejection fraction is normal. I want to be healthy. I have two children and a husband that would love to see me happy and not in pain.
Most RLS cases such as yours should be easy to resolve with
proper care. Sinemet is no longer recommended for daily treatment of RLS (this
has been well known in the USA for the last 15-20 years). The drug causes
augmentation of RLS (a worsening of RLS from taking a dopamine drug) that
requires more and more medication to relieve the worsening RLS symptoms (which
in turns makes the RLS worse after providing temporary relief).
At first we replace the Sinemet with dopamine agonist drugs like Mirapex and Requip but now we know that they also cause augmentation problems (but this may take much longer to emerge). You could discuss switching to a long-acting dopamine agonist like Neupro (augmentation is less common with the long-acting dopamine agonist drugs).
An alternative would be to switch to an alpha-2-delta drug (Horizant, Lyrica or gabapentin) but it could be several weeks before the RLS calms down enough for those drugs to be effective.
Opioids do work incredibly well to transition off dopamine based drugs and when used in low doses can be very safe and effective. If prescribed and followed by a doctor who is well versed with using opioids, tolerance, dependence, addiction or other long-term issues should occur very uncommonly.
A Reply from Eliza
Sent: Monday, June 22, 2015 1:45 PM
Subject: Re:12 years RLS
Can you take a Horizant class drug along with the Sinemet until the horizontal kicks in? The thought of not having a relief is close to torture.
The issue with the use of a Horizant class drug is not that it takes a few weeks to ďkick inĒ but rather it is not up to the task of relieving RLS symptoms that worsen upon withdrawal of a dopamine drug like Sinemet. It take 2-4 weeks (or longer) for the RLS to calm down enough after stopping a dopamine drug so that the Horizant type drugs may then have a better chance at being adequate to control the remaining (but decreased) RLS symptoms.
Sent: Sunday, June 21, 2015 11:21 PM
Subject: Long-term use of PPI (proton pump inhibitor)
I was wondering if long-term use could lead to development of RLS? I was diagnosed with RLS about 7 years after starting a proton pump inhibitor (like Nexium, Prilosec, etc.). I've been taking one consistently for 18 years.
There is no known link between PPI drugs and RLS.
Sent: Monday, June 22, 2015 6:44 PM
Subject: RLS and Chilblains
I have had RLS since I was a child and when my legs would ache my Mother would fill up the hot water bottle and I would sleep with this until morning. I have always complained with leg cramps all through my life. Later, when heating pads were made my Mother bought them for me because the doctors did not know about RLS. I am now 63 years old and I am still suffering with this aggravating, nagging, problem.
Eight years ago I moved to Turkey and live in a city that is more damp than where I grew up as a child and we also have a lot of storms both winter and summer. My doctor is familiar with RLS and has prescribed Neurontin and Magvital which is a Magnesium powder solution that is added to water. I take two Neurontin 600 mg. per day (one a.m. and one p.m.) and the Magnesium at night.
Tonight, I am having a really bad spell with RLS. I have been awake since lying down for sleep and even heard a rain shower. I do not know if we even have some of those medications here in Turkey or not but my question is, can I take any of those with the ones I already take?
I am so sorry that so many people have RLS. I hate that there is no cure because I and many others have had this most if not all of their lives. One other question I have is, I have recently been diagnosed with Chilblains and can this be some side effect of the RLS? I have not had restful sleep for over 24 hours now and I may be grasping for straws but the Chilblains are evident even in June. Please help me so I can ask my doctor for something to help me sleep. God bless each and every one of you out there who suffer as I do each night!
Although Chilblains have been associated with other diseases
(especially connective tissue diseases like Lupus), they are not associated with
Neurontin can be very helpful for RLS symptoms but it does not usually get that well absorbed at higher doses so it is likely that increasing the dose will not provide much additional benefit. Magnesium generally does not help RLS.
Lyrica (pregabalin) may work better than gabapentin (it is in the same class of drugs but is much better absorbed) but this might be more expensive.
Pramipexole or ropinirole would provide much more relief, but over time (months to years) has a high likelihood of causing augmentation (a worsening of RLS from taking a dopamine drug).
Opioids (in low dose) are often used for more severe cases and work quite well if prescribed by a doctor who is knowledgeable in using them.
A Reply from Shirley
Sent: Wednesday, June 24, 2015 3:09 AM
Subject: RLS and Chilblains
I want to thank you for answering my e-mail. I read more information on Lupus and all I can say is, I hope I do not have it. When I came to Turkey eight years ago I had never heard of Chilblains. My first attack was in 2007, again in 2013 and 2014. This last attack has left my toes feeling numb-like. It always feels like another attack is pending.
I guess my neurologist prescribed the Magvital for my aches and pains due to my failed back surgery from 1996. As one other writer wrote about their childhood being contributing their leg pains as 'growing pains' my Mother also referred to mine as those growing pains. I stand over six feet tall so she really thought it was due to my growing so quickly. I thought maybe because I had taken ballet and all the stretching it was my body saying to me to keep stretching. I am fairly thin for a 63 year old woman but exercise is always good.
I must confess to you and the readers that there are times I wish my life were over due to this nagging leg pain each night but, I remember my two sons and beautiful grand-children and life goes on. Between the leg pain and Chilblains, each winter is becoming more and more dreaded. I am typing to you now in tears because I never thought my end days would be so dreaded and filled with agony.
You should not give up on relieving your RLS leg discomfort.
With expert care, typically 98% of patients should get excellent relief of
The trick is finding the physician who can properly treat you (which may be more difficult in Turkey).
Sent: Tuesday, June 23, 2015 2:09 AM
Subject: Questions about RLS and PLMD
I don't think 300 mg of pregabalin has had any effect on my RLS/PLMD is it worth trying gabapentin? Do opioids have any effect on PLMD or does it just take the discomfort away from RLS (like just numb the pain)?
I know trazodone and Wellbutrin are friendly but I think I might have to go onto a tricyclic for another condition. Are there any that you think have the least amount of disruption to RLS?
Martin in the UK
If pregabalin at 300 mg was not helpful, it is quite unlikely
(but not impossible) that gabapentin might be helpful.
Although opioids numb pain in general that does not seem to be how they work for RLS. They relieve the discomfort as well or better than dopamine drugs or anticonvulsant drugs. They do have a lesser effect on PLMS but most patients do not have real ill effects from the PLMS (although their bed partners may have some issues).
It is thought that desipramine may have less worsening effects on RLS than the other tricyclic antidepressant medications (it is less serotonergic).
Sent: Thursday, June 25, 2015 9:14 PM
Subject: RLS in the abdomen
I also have been having abdominal symptoms that feel like RLS. I don't think I do a lot of limb movement, but d finitely feel like bugs are crawling inside my legs. It comes on for many months, goes away for a while and comes back. This time I am noticing a lot of stomach symptoms, mainly when I sit down at night. It is driving me crazy. I suspect it is RLS because it is also back in my legs at the same time. It seems to mainly be a couple inches above my naval, but it is hard to tell.
RLS can occur in other body parts but it must first have been present in the legs. They way to tell if your abdominal symptoms are due to RLS is to see if they go away with walking (just as your leg symptoms go away with walking).
Sent: Tuesday, June 30, 2015 3:51 AM
Subject: Marijuana and RLS?
Iím using a vaporizing pen and an Indica oil (22.4% THC and 39.8% CBD) with some success, but not enough that I can reduce the amount of Mirapex or Lyrica. What kind of kind of marijuana have people found most beneficial? Should I be using something with more THC or something else to get off the medication? Oxycodone works, but makes me hyper so I canít sleep and Iím woozy the next day.
The Relaxis didnít help at all ó made my legs worse.
It is not fully clear what type of marijuana compound is best for RLS. I will post this on the web to see if any of the RLS patients who have tried different formulations can relate their experience.
Sent: Tuesday, June 30, 2015 3:32 AM
Subject: RLS medication
I have been told by a few member's (on the RLS forum) that you have a few patients that have to keep swapping & changing their meds because after awhile the meds they are taking stop working. Well I think that's my case since I have been taking lots of medication but it only lasts for about a week or so. I just had a 5/6 week break from ropinirole & my GP put me on oxycodone but that's another story. Eventually the oxycodone stopped working so I had to go back on ropinirole (didn't want to) but had no choice my legs were all over the place. I know for a fact this med will stop working for me in a few weeks time, so can you tell me will it be ok to swap & change meds?
Susan T., UK
I do have patients who alternate medications due to problems with them wearing off or because of side effects that may develop with time. Patients may alternate 2, 3 or more drugs every few days or as long as every few weeks or months depending upon their needs. As long as there are no problems with abruptly changing from one drug to another (in which case a slow taper over a week or two might be necessary), this switch in medications can be done as the patient notices that their current drug is not working as well as before.
Sent: Friday, July 03, 2015 8:03 AM
The latest from the neurologist I saw this week who insisted she could increase my Requip up to 24 mg or even as high as 48 mg! When I asked her about augmentation she said no problem, we have lots of room to increase! Needless to say, we had a bit of a disagreement.
Compromise, since I can't get Mirapex ER here, she has
prescribed the equivalent in regular Mirapex at .25 mg 3 X a day, which she said
will be exactly the same as .75 Mirapex ER.
Hope she is right for once!
It is quite difficult to believe that a board certified
neurologist still thinks that Requip up to 24 mg or even 48 mg is reasonable for
RLS. She clearly does not understand or know much (if anything) about
I would suggest that you might help educate her so that she does not try to treat other patients with those excessive doses of a dopamine agonist.
Here is the latest article from the IRLSSG which is currently on the web and will be published in a peer review journal in the near future and states very clearly that the daily recommended dose (which is 4 mg for Requip) should not be exceeded:
Although Mirapex .25 mg 3 times a day is the same dose as Mirapex ER .75 mg, the issue is the long acting nature of Mirapex ER may prevent augmentation while the pulsatile nature of the short acting Mirapex is thought to cause augmentation. For the short term (a few months) all that may happen is that your RLS will continue to augment even more.
Sent: Friday, July 03, 2015 8:17 PM
Subject: Requip and pregnancy
I have been on Requip .5mg for several years for treatment of RLS. On a good night I take 2 tabs, on a severe night may take as many as 5 tabs before I get relief. I recently found out that I am pregnant, about 4 weeks along. My neurologist does not want me on the Requip at all during the pregnancy. I am absolutely miserable without it and cannot imagine 9 months of this RLS torture.
Is Requip really dangerous to continue?
You are in a difficult situation for several reasons. It is
possible that you may already have augmentation from taking Requip (a worsening
of RLS from taking a dopamine drug like Requip) and may have to get off this
drug eventually anyway or risk continued worsening of your RLS.
Pregnancy (as you already know) tends to worsen RLS but we like to have pregnant women take as few drugs as possible. Requip is a category C drug which is somewhat more risky for pregnant women. Category C is defined as follows:
Animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.
This does not mean that they will cause fetal abnormalities but that they are clearly riskier and most doctors would agree to use them during pregnancy only when no alternative drugs exist and the risks are outweighed by the benefits.
For RLS during pregnancy, most experts agree that drugs during the first trimester should be avoided as that is the most active period for fetal organ development.
There is a recent consensus article listed below that discusses these issues and gives recommendations for treatment. First non-drug therapy is suggested. One of the newest and best may be the Relaxis vibration pad and you may want to investigate that treatment and discuss it with your doctor. Iron therapy should be considered next.
If drugs are needed, the clonazepam and Sinemet should be considered first. For severe RLS, opioids (like oxycodone) are the backup treatment when all else fails.
You can read the article and discuss it with your obstetrician and neurologist to come up with the best treatment plan to get you through your pregnancy and subsequent breast feeding.
Consensus clinical practice guidelines for the diagnosis and treatment of restless legs syndrome/Willis-Ekbom disease during pregnancy and lactation.
Picchietti DL, International Restless Legs Syndrome Study Group (IRLSSG). Sleep Med Rev. 2015 Aug;22:64-77
Sent: Saturday, July 04,
2015 8:02 AM
Subject: New RLS sufferer
Having read around RLS web sites for some time since diagnosis 6 weeks ago-I am 67 and it came on suddenly-I have just come across this site and have read some of the various accounts. Some of them make my symptoms seem quite trivial! My question is about Ropinirole. I was on 0.88 of pramipexole and then 0.180 but sleeplessness and rebound caused the doc to try Ropinirole. I started at 0.25 and am now up to 1.5 taken about an hour before bed.
My difficulty is that the
symptoms are getting worse. Even with the help of 1.5 clonazepam taken when I go
to bed at 10.45 I am awoken around 4.00am with violent spasms. I should go up to
2.0 of Ropinirole but am not keen to do this. I see a neurologist on Friday so
hopefully he or she can suggest something better
The issue is that you are
likely experiencing augmentation which is a worsening of RLS from taking a
dopamine drug like pramipexole or ropinirole. Most physicians (and even
specialists) know very little (or anything) about this condition and will not
know how to treat it. They will normally just tell you to increase the dose of
the dopamine drug which will help temporarily (weeks to months) until a further
increase is necessary. The RLS symptoms get progressively worse as the dopamine
doses are increased.
The treatment is to get off the short-acting dopamine drug and change over to alpha-2-delta drugs (like Horizant, Lyrica or gabapentin), long-acting dopamine drugs (Neupro) or to an opioid (oxycodone, methadone). This takes quite a bit of expertise and you may have difficulty finding a doctor capable and knowledgeable enough to help you.
Here is a link to a newly published article on how to treat augmentation created by several of us on the IRLSGG that can guide you and your doctor:
Sent: Saturday, July 04,
2015 2:43 PM
Subject: Medications for RLS?
I like my doctor but am not sure he is up on all the pharmaceuticals. He just prescribed lorazepam but it's not looking like the best choice. Klonopin had given me episodic amnesia.
Without having previously read anything on the subject, I just reported to my doctor that the return of my PLM happened to coincide with my stopping smoking pot in the evenings.
Klonopin has a very long
half-life (over 40 hours) so can cause problems with next day sedation (such as
your amnesia). Lorazepam is somewhat better (half-life of about 10 hours) but
still may result in some next day sedation. Both those drugs are benzodiazepines
which do not treat RLS or PLM but rather just helps RLS patients get and stay
asleep (as they would do for patients with back pain or headaches).
Inhaled marijuana does help RLS so stopping it could easily result in a worsening of RLS symptoms.
However, there are lots of other medications such a Horizant that will help sleep and control RLS symptoms.
A Reply from Chris
Sent: Thursday, July 09,
2015 1:11 PM
Subject: Medications for RLS?
The main downside of my PLM is that I donít get restful sleep and often suffer from exhaustion by midday. Do you know if folks have had good results with Horizant in cases like mine.
Klonopin has a very long
half-life (over 40 hours) so can cause problems with next day sedation (such as
your amnesia). Lorazepam is somewhat better (half-life of about 10 hours)
but still may result in
some next day sedation. Both those drugs are benzodiazepines which do not treat RLS or PLM but rather just helps RLS patients get and stay asleep (as they would do for patients with back pain or headaches).
Inhaled marijuana does help RLS so stopping it could easily result in a worsening of RLS symptoms.
However, there are lots of other medications such a Horizant that will help sleep and control RLS symptoms.
Sent: Wednesday, July 08,
2015 12:05 PM
Subject: Acceptable medication for headaches
Hi. I am one week into treatment for RLS/PLMD with Mirapex. I also have osteoarthritis which is treated with Naproxen. I often wake up with headaches that don't go away anymore. My doctor said I could take Tylenol for a headache while I am taking the Naproxen but I just read that can make the RLS worse. What would be acceptable headache medication for me to take?
The Mirapex seems to be making my legs feel worse as well as having pain and tingling in my legs in the morning as well. I started on .125 mg, then moved up to .25 mg last night. Is it too soon to think this is not working for me? Will it get better? I have a checkup in 5 weeks.
Tylenol does not make RLS
worse. It simply does not help RLS discomfort so we do not suggest that patient
who take opioids (like Vicodin or Norco) use medications that are combined with
Tylenol as the Tylenol adds no benefit for some small risk (especially if taken
over many years).
Although Mirapex and Requip are still on the list of first choice medications for RLS, many experts (like me) would rather start with an alpha-2-delta drug (Horizant, Lyrica or gabapentin) which has less issues with long term side effects (such as augmentation of RLS symptoms or impulse control disorders).
I typically recommend NOT to go over .25 mg of Mirapex as this increases the risks of long term side effects.
Sent: Wednesday, July 08,
2015 1:46 PM
Subject: Seroquel and RLS?
My psychiatrist prescribed Seroquel for me for anxiety. Can it worsen my RLS symptoms? I am unable to find the answer with the research I have done myself.
There is not a lot of
experience with Seroquel and RLS but most patients (in my experience and in the
minimal literature available) have found that it worsens RLS symptoms. It is
possible that if it helps your anxiety, it may decrease RLS symptoms through
You can find this information on our website on the RLS Treatment Page.
Sent: Thursday, July 09, 2015 7:29 PM
Subject: RLS Information/DBS for RLS?
1: have you ever heard of intermittent restless genitalia in a male?
2: I found this about on Medscape. What are your thoughts.
Deep-Brain Stimulation Relieves Restless Legs Syndrome
Daniel M. Keller, PhD
June 29, 2015
I have only heard of
restless genitalia in females and all that literature is in the journals that
deal with sexual issues. There is one article of restless genitalia associated
with RLS but again, that is only in females.
DBS has only been used in Parkinsonís disease patients with RLS (and these patients are likely quite different than regular RLS patients without PD) and initial results looked somewhat promising. However, subsequent studies have not shown that much benefit from DBS.
In fact a more recent study shows that it may cause RLS:
Sleep Med. 2015 May;16(5):583-8. doi: 10.1016/j.sleep.2014.11.020. Epub 2015 Mar 3.
Marques A1, Fantini ML2, Morand D3, Pereira B3, Derost P4, Ulla M4, Debilly B4, Lemaire JJ5, Durif F4.
Studies investigating the effects of subthalamic deep-brain stimulation (DBS-STN) on restless legs syndrome (RLS) in Parkinson's disease (PD) are limited and report conflicting results, with some describing the emergence of RLS after DBS-STN, while others report postoperative improvement of this disorder. Severe decrease in postoperative dopaminergic medications dose, which may unmask RLS symptoms, has been proposed to explain the emergence of RLS after surgery. We aimed to specifically identify factors associated with the risk of developing RLS after DBS-STN in order to enhance our comprehension of the underlying mechanisms contributing to the development of RLS in PD.
In this observational prospective study, we evaluated the occurrence of RLS in 31 patients with PD originally free from RLS symptoms, six months after bilateral chronic DBS-STN, and compared clinical and treatment parameters of patients who developed postoperative RLS with those of patients without postoperative RLS.
Six patients out of 31 reported post-operative emergence of RLS. There was no between-group difference in demographic data, pre-operative treatment parameters or clinical improvement measures after DBS-STN. However, PD patients with emergence of RLS after DBS-STN had a higher dose of dopamine agonists at postoperative evaluation compared to PD patients without emergence of RLS (p = 0.040) and a lower percentage of decrease in dopamine agonists (p = 0.043).
Overstimulation resulting from cumulative effects of dopamine agonists and STN-DBS may induce changes in excitability of the dopaminergic system, leading to an emergence of RLS. Clinicians should take into account this phenomenon while adjusting pharmacological treatment after surgery.
Sent: Saturday, July 11, 2015 3:02 AM
Primary RLS, augmented on Mirapex. Been on 1mg Neupro patch approximately 18 months with good results. Due to breakthrough I have upped to 2mg this week. I changed from Paxil to Mirtazapine to try to improve RLS. Trazodone didn't treat the depression and Wellbutrin not available in UK.
All well until 4 weeks into Mirtazapine , RLS severe and new symptom of very severe PLMWA. Arm and leg involvement. Could this be due to the Mirtazapine or possible augmentation due to raising Neupro dosage?
Would you suggest stopping patch using Morphine for withdrawal or going back
onto Paxil. No antidepressant is not an option due to clinical depression.
Kim Waller, UK
It is really very difficult to say whether you are experiencing augmentation
from Neupro (however, augmentation usually takes several weeks or months after
an increase in dose first provides benefit) or a worsening of RLS due to the
change from Paxil to Mirtazapine (which is known to worsen RLS).
It is hard to imagine that Wellbutrin (or its generic, bupropion) is not available in the UK. I did a quick search and it seems to be available as Zyban which is the same drug but marketed for smoking cessation. It should be available as the generic also if you can get your doctor to prescribe it.
Otherwise, it is very difficult to advise you as to what is the best next approach as it is not clear what is causing your problems. It may take some trial and error with changes of medications to figure that out (although one of the best approaches would be to change to bupropion).
A Reply from Kim
Sent: Saturday, July 11, 2015 12:41 PM
Subject: RE: RLS
In your experience which would consider is the worst for RLS in general Paxil or Mirtazapine?
Mirtazapine has less serotonergic effects than SSRI drugs like Paxil which theoretically makes it less bothersome for RLS but that can still vary from patient to patient markedly (which means that only you can tell which one is worse).
A Reply from Kim
Sent: Wednesday, August 12, 2015 9:19 AM
After years of classic text book RLS I have over the last 3 months had a change in symptoms. My RLS is well controlled with 1mg Neupro patch and low dose morphine. However my main symptom now is INVOLUNTARY jerking, jumping of my legs in the ABSENCE of any RLS urge to move symptoms.
Around the time this change occurred I changed from Paxil to Mirtazapine and
as a result my RLS has improved. I have battled to get Wellbutrin but it is a
definite no. I would be interested in any advice/opinions on my new symptoms
The involuntary jerking/jumping of your legs are likely PLMW (PLM leg jerks while awake). The combination of Neupro and morphine may be controlling the RLS but morphine does not control the PLM as well as dopamine drugs. It is not clear why a change from Paxil to Mirtazapine should result in an increase of PLMW but patients do react quite differently to the antidepressant drugs and that change in treatment most likely accounts for your new symptoms. If the leg jerks are not too troublesome, it may be wise to leave them be and not change your medication.
Sent: Friday, July 17, 2015 3:50 PM
Subject: Question about neuro-protective regimen...
I try to keep up on the RLS research and recently came across a couple of articles about brain changes in RLS patients (Pub Med 25176196 and 24620984) or decreased myelin (Pub med 21570342). If research is starting to show degenerative brain changes, does some neuro-protective diet or regimen make sense? Do you recommend anything to contribute to overall brain health? Some MS and Parkinsonís specialists seem to emphasize specific diets and supplements.
So far, they have just found an association with some degenerative changes in
certain areas of the brain and RLS. Even in more established diseases such as MS
and PD, diets and dietary supplements are not generally accepted as being
helpful (there are always a few doctors who claim to have detected benefits in
their patients but no good controlled valid studies to support their claims).
The issue with brain degeneration likely has little or nothing to do with what a patient takes in but rather other issues that prevent the maintenance and integrity of the brain tissue. We have a very long way to go before we can even hint that taking any supplements will benefit the brain and subsequently, RLS symptoms.
Sent: Friday, July 24, 2015 9:37 AM
Subject: MS Contin dosing for DA withdrawal
I was given your e-mail address from Ann with the RLS Foundation. I am two days into a drug holiday to get off of Mirapex. I've been augmenting for over a year, and it is getting worse. I've met with my PCP, and he prescribed 15 MG of MS Contin for the withdrawal symptoms. Unfortunately, this did not cover the symptoms, as I did not get any sleep the past two nights.
Would you be able to tell me the appropriate dosing of MS Contin to control Mirapex withdrawal symptoms? Any help you can provide is greatly appreciated!
MS Contin is a tricky drug to use for RLS as it is a long acting drug but is not as potent as methadone or oxycodone. I have very little experience using it for RLS but I have patients who need 30 to even 60 mg. We typically can use smaller opioid doses with the short to intermediate acting opioids as we can target the bulk of the dose when it is really needed (like around bedtime).
Sent: Friday, July 24, 2015 1:20 PM
Subject: Augmentation Resolution
We have corresponded before. The good news is that I am now completely off 0.5 mg pramipexole (since March 26) and the 2 mg. Neupro patch ( July 15) Through the RLS Foundation's website, I found a local neurologist who treats RLS and he helped me to get off the patch by weaning me from the 2 mg. patch to the 1 mg patch. I was on the 1 mg. patch for 14 days when I stopped it. The only covering agent is clonazepam 0.5mg. I take 1/2 a tablet at supper and 1 tablet at bedtime. While it does help with sleep (especially between 4 a.m. and 8 to 9 a.m.).
I still suffer horrendous symptoms that usually start around 11 p.m. and last until 3 or 4 a.m. As you know, Canadian doctors are loath to prescribe methadone. As I understand it, this period I am now in is supposed to allow my body to begin manufacturing its own dopamine and to allow the dopamine receptors to reset.
Can you tell me whether this always happens or are there some people for whom this does not occur? I know I have to be patient but sometimes it is hard, especially in the middle of the night when symptoms are fierce and diversions are hard to find.
It generally takes 2 weeks (but can take up to 2 months for the dopamine
receptors to "reset" (we think this is what occurs) after completely stopping
your dopamine drugs. However, the RLS does not go away but rather just goes back
to where you were before starting the dopamine drug.
Other drugs that may help include Lyrica (or gabapentin if that is too
expensive) and lower potency opioids like codeine or hydrocodone which Canadian doctors might prescribe more readily. Speak to your doctor about those options.
A Reply from Larry
Sent: Friday, August 07, 2015 3:38 AM
Subject: Twitching body
I have been off the 2 mg. Neupro patch and all RLS medications since July 15. Last night my back was extremely itchy. Every time I attempted to lie down, my body would twist and twitch when it came in contact with the bed sheets, making it impossible to keep lying down. I have had this before, even before I got off the DA, but never to the extent of last night's experience.
I have had (mostly daytime) itchiness before without the twitching experience so the two don't necessarily seem to go together. I interpreted the recent absence of the itching as a positive development but last night's experience of itching and twitching has made me wonder what's going on. Is it part of the still incomplete DA withdrawal experience?
I would have thought that I would be past all this since I have been off the
patch since July 15. Any help you can give to explain all this is greatly
Itching is typically not a symptoms of RLS or dopamine agonist withdrawal so
it is difficult to explain your symptoms. It could easily be an unrelated issue
and you may not be able to link it with your current actions.
It can take up to 2 months for the effects of a DA/augmentation to completely reverse.
Sent: Friday, July 24, 2015 11:07 PM
Subject: RLS treatment with buprenorphine
I just ran across your site. For the past several years I have had a significant case of Restless Limb Syndrome. Serendipitously I discovered a very tiny dose of Buprenorphine works better than ANYTHING else prescribed. And without side effects if taken at the right dosage.
The tablets are divided into fragments the size of a sesame seed and taken two to three times a day, sublingually.
I hope this can help someone. It has been a real God-send for me.
Buprenorphine is an opioid and we do know that opioids are very potent
treatments for even severe RLS symptoms. Buprenorphine is both an opioid agonist
(meaning that it works like other opioids, for example oxycodone or methadone)
but it also has some opioid antagonist properties (blocking the effects of
opioids) which is why it is used for opioid addictions.
However, it does provide reasonable pain relief and may also provide reasonable RLS relief (especially for less severe cases) due to its positive opioid properties (as in your case).
Sent: Sunday, July 26, 2015 11:04 PM
Subject: RLS treatment
I am 35 years old male and been recently diagnosed with RLS which I have since 5 years. The Doctor prescribed me 1 tablet a day (10mg) of Cipralex and 1 tablet a day of Sifrol (0.18mg). I had a second consultation with another doctor and asked me to stop the Cipralex and continue with the Sifrol which I have been taking now for 1 week. ( 1 tablet in the evening)
After reading the above comments, I am worried that I might get augmentation after some time if I keep taking the Sifrol. My question is, is it advisable to have the medication noting that my symptomsí are moderate but getting more annoying (I still manage to sleep at night). Or shall I stop the Sifrol and try to reduce the symptoms using other remedies? And if yes, is it ok to stop the Sifrol now since I am on it for only 1 week?
The second consultation doctor was correct in telling you to stop Cipralex (citalopram
called Celexa here is the USA) as this drug typically worsens RLS.
Sifrol (pramipexole, called Mirapex here in the USA) is still considered one of the drugs of first choice. Many RLS experts are trying to change this due to the high incidence of augmentation but other experts still prescribe pramipexole as first line therapy. At low doses, the risk of augmentation decreases. You have been started on the second lowest dose (the lowest is 0.088 mg) which is the dose that I would typically recommend starting.
Since you have only been on Sifrol for a week, stopping it now is quite easy. You might want to discuss starting gabapentin or Lyrica (even better but may be more expensive as no generic is available) as these drugs to not cause augmentation.
Sent: Tuesday, August 04, 2015 10:51 AM
Subject: RLS and escitalopram (Lexapro)
I have had RLS all my life and it has always been bearable. Sometimes 2,5 mg Ambien was needed to stop moving and sleep. Due to anxiety and depression I have started Escitalopram and after 5 days my RLS became the worst ever experienced. Would continuing the escitalopram will further increase of later decrease the RLS symptoms?
I have been taking 5 mg per day in the morning. My doctor is proposing to use
an even lower dose, starting at 1 g and take it from there. I would rather take
no additional medications.
Escitalopram (Lexapro) is an SSRI antidepressant that typically worsens RLS. The problem is dose related so you are lucky that you are taking the lowest dose of 5 mg. It is possible that decreasing the dose to Ĺ tablet may improve your RLS symptoms (I am not sure that you can get down to 1 mg). If not (and if Wellbutrin is not helpful), then you may need to add an RLS medication (like Horizant, Lyrica or gabapentin) to treat your RLS.
Sent: Wednesday, August 05, 2015 1:51 PM
Subject: RLS and ropinirole?
I have been taking ropinirole for three years and am now experiencing light headedness every day for about 5 weeks. I was taking 1.3 milligrams and now have reduced that to .75 milligrams and only feeling a little better. My RLS and PLMD have been much worse as a result. I feel that I am probably having augmentation. I am going to my doctor tomorrow and have decided to quit taking the ropinirole. I will take your RLS book and other information about stopping ropinirole in hopes of that putting him more at ease about the use of opioids.
What types of withdrawal symptoms should I expect. Would I get symptoms 24/7 and need an opiate in my system around the clock? What dose level would you recommend starting with.
My PLMD is much worse than my RLS over that last year. Which medications is more effective for PLMD when I do get off the ropinirole?
You are on a fairly low dose of ropinirole compared to most patients who get
augmentation. Low doses of an opioid (methadone or oxycodone 5 mg, 1-2 per day)
typically will cover your increased (sometimes markedly increased) RLS symptoms
from stopping ropinirole. It may take a day or 2 to find the correct dose. After
10-14 days, most patients can reduce the opioid dose considerably.
It may be difficult to find a local doctor who will comfortable prescribing potent opioids for RLS. Even most specialists (sleep and neurology specialists) are very reluctant to prescribe opioids in general and especially for RLS.
PLMS is typically not a concern as it does not affect sleep quality (except for the bed partner) unless they occur while awake and thus prevent you from falling back to sleep. Opioids do not treat PLMS as well as dopamine agonist drugs like ropinirole. Horizant works better for PLMS but will not help the RLS until you have been off the ropinirole for several weeks.
Sent: Friday, August 07, 2015 12:40 PM
Subject: RLS help for augmentation
I have been given your e-mail address by a moderator on the RLS discussion board who suggested you may be able to help me. Although I have seen both GPís and a consultant in England, I have failed to establish a successful treatment regime for my RLS and at this moment in time am unable to gain control of my terrible symptoms.
I first became aware of my symptoms in 2008. The GP prescribed Ropinirole and I took it for about 12 months until the drug stopped working. My doctor then prescribed Pramipexole which seemed to work well from 2009 to earlier 2015. I took .180 mg for the first 4 years which was fine. Over the last 2 years my symptoms got progressively worse and the doctor increased my dose which worked at first. Gradually though, I had to progress to the maximum dosage of 0.540 mg.
Over the next 3 months my evenings became living hell for me with uncontrollable urges and tingling in my legs as well as sensations of water flowing inside my skin. It was then my GP sent me to a specialist. Whilst waiting to see him my family did some research and found the RLS web site and ordered your book. We discovered I was suffering from augmentation. I asked the GP to put me on Tramadol 2 x 50 mg at night.
By the time I saw the specialist I had already started to stop the Pramipexole (which I did over 3 weeks). The specialist agreed I was suffering from augmentation and put forward the attached treatment plan. He told me to start with Amitriptyline and insisted if I kept on increasing the dose I would eventually sleep. I gave up at 50 mg when I still couldnít sleep or think straight. It was also suggested I used codeine 2 x 50 mg at night which was useless. I was also given Ropinirole to try again which exacerbated my symptoms. Tramadol was my only way to get some relief from the terrible symptoms.
As I write (5 weeks from when I first started to stop the Pramipexole) I am taking 2 x 50 mg Tramadol at around 6pm and going to bed at around 10:30 pm (if I am able to settle) and 2 x 50 mg Tramadol in the early hours. This enables me to get some sleep but by no means anywhere near enough. I find sitting for long periods, lying in bed, computer work and reading etc. increasingly intolerable. Over the last 2 weeks spontaneous leg kicking has also become an issue and if I do manage to fall asleep I have to hang my legs out of the bed.
Although Tramadol seems to have started to control some of my symptoms, I am worried that I may become addicted to it as I have been taking it for 3 months now. Today the GP has also put me on 0.5 mg of Clonazepam at night.
I would really appreciate any advice you could offer that would help me
establish a successful treatment plan and eventually result in me being able to
live my life to the full again and control these dreadful symptoms.
Unfortunately, most doctors know very little (often nothing) about treating
augmentation of RLS from dopamine agonist drugs like ropinirole and pramipexole.
You have already done the hard part which is getting off the pramipexole.
Amitriptyline makes RLS worse so should not be used as a sleeping aid in your
case. Clonazepam does help RLS patients sleep but has a 40 hour (or longer)
half-life so will result in next day sedation after continual use. There are
many shorter acting benzodiazepines which can accomplish the same goal with much
Codeine is weak opioid that typically provides only mild benefit for most RLS patients and is not very helpful in the setting of augmentation. Tramadol may be somewhat better (this can vary from patient to patient) but may still not be adequate for you situation (as you have already discovered).
At this point, the best suggestion is to start on oxycodone or methadone but that may be very difficult to obtain from a physician in the UK. An alternative approach would be to add Lyrica or gabapentin to your current drugs (this should be tried without clonazepam or other sleeping pills at first) as these drugs may help alleviate RLS symptoms and help insomnia through their sedative side effects.
See http://irlssg.org/augmentation/ for the recently published guidelines for treating augmentation that several of us experts produced.
A Reply from Brian
Sent: Monday, September 07, 2015 12:46 PM
Subject: Request for further help
Thank you for your recent advice. My GP has been happy to follow it, but we both feel that I have some way to go before I could consider that I have the symptoms under control.
Due to Augmentation, I took my last Pramipexole tablet six weeks ago. Since then and up to 15th August I have been taking 2 lots of Tramadol (2x50mg) at 7pm and 11pm each evening. On your advice, I have added Gabapentin which I take at 9pm. (Not knowing a suggested dose for RLS using Gabapentin my GP set me off on 300mg at night). From 15th August to date I have been taking the Gabapentin and trying to drop off the Tramadol.
This has been largely unsuccessful, I have found that the Gabapentin has certainly helped me to sleep and that I have had some of my best nights sleep since April. However, the effect on the RLS has been minimal. When I started taking the Gabapentin I dropped off 1 Tramadol tablet at 11pm. This seemed quite successful for 3 days and then my symptoms started to increase in the daytime and at night time my RLS worsened. I decided to re-introduce the Tramadol tablet that I had dropped and my symptoms improved both in the day and at night. It seemed that the level of Tramadol in my body was dropping below a level that held off my symptoms.
I am now alternating the Tramadol dose 100mg one night and 150mg the next and
I am just about holding my own. I am about to increase my Gabapentin to 400mg
although, I wonder if Gabapentin is going to work for me. I don't want to take
it in the daytime as although I am retired, I help out at a company 2 days a
week and frequently work with high voltage electricity so need to keep my mind
From your experience of prescribing this drug, are you able to suggest what an effective dose of Gabapentin would be?
As yet I have not been able to discover a specialist in the UK who I can be sure understands RLS and so I have no one to advise me on just how bad my RLS really is, I feel that I could catagorise myself as severe. Unfortunately, Horizant is not available in the UK yet and as I need something that is long acting I feel that I must start considering a return to Pramipexole (if that is possible) just incase we aren't successful with Gabapentin.
After 6 weeks would you expect my body to have forgotten that I have been taking Pramipexole or have I got to go longer before I could consider re-introducing a dopamine agonist?
I have read on blogs that some people have been using a small amounts of Ropinirole and Pramipexole together. If I restarted a dopamine agonist, would this be the correct way to proceed?
The issue is that gabapentin gets absorbed very poorly in most patients (and
it is hard to determine which patients may absorb it well) and as the dose is
increased, there may be very little of an increased benefitÖwhich is why it is
hard to recommend a dose). Lyrica (available in the UK) gets very well absorbed
in almost all patients and is a much better choice. It is more likely that with
a combination of Lyrica and tramadol that you may do much better. If you could
get a prescription for a true opioid, it is extremely likely that you would get
Once augmentation has occurred with pramipexole, it is quite risky to restart it even at low doses. We do this sometimes and get away with it but augmentation may recur even after a decade or longer (which may explain the temporary seemingly long lasting success reported by many patients).
You may still experience some improvement from being off pramipexole even after 6 weeks but it is quite likely that you are near maximal improvement of the augmented RLS symptoms.
Sent: Saturday, August 08, 2015 11:32 PM
Subject: RLS patient-Help required
Your webpage is indeed a blessing to patients specially living in underdeveloped countries.
I am a male, living in Pakistan, where medicines are very cheap ( quality may
be compromised) and can be purchased without prescription and doctors rarely
know about RLS.
Now aged 59, weight 67 Kg, suffering from RLS since 13 years. One year ago, when RLS attacks were 3-4 times a week when a doctor advised me Ronirol (Ropinirole) . Staring from 0.25mg/day, now within a span of 12 months I have increased the dose to 2.5mg/day.
Now I feel leg pain every night of week. The leg pain or symptoms are worsening. Even I have to take split doses ( I.0 mg in the afternoon and 1.5 mg around 8 pm) of daily total dose of Ropinirole 2.5mg /day. However after 2 hours of taking dose, the leg pain is diminishes. I awake in the morning after six hours and when I awake I feel sleepy but pain in the leg calves.
My questions are:
Whether it is now augmentation stage as symptoms are worsening or can I
further increase the daily dose of Ropinirole up to recommended daily dose of 4
If it is a case of augmentation, then how should I switch to alternate medicine ( its name and dose) and the switching methodology.
It does sound as if augmentation has already occurred. Augmentation is a
worsening of RLS symptoms after doing well on a dopamine agonist. The symptoms
occur earlier in the day, become more intense, require more medication and are
generally more difficult to control.
Increasing the ropinirole dose up to 4 mg will provide temporary relief (weeks to months) but will ultimately make the problem worse and more difficult to treat. We normally transition patients over to an opioid (like oxycodone or methadone) which is fairly easy to do but does require some expertise.
The problem that you are experiencing is called augmentation which is a worsening of your RLS due to taking a dopamine drug (like Mirapex or Requip). Although the drug helps initially and with each increase in the dose, each further increase in the dosage adds fuel to the fire causing the augmentation process to accelerate. Therefore, RLS experts strongly advise that patients with augmentation should not keep increasing their dopamine agonist dose as that will ultimately result in heightened problems with RLS. Due to these concerns, I currently recommend that the dose of Requip should not exceed 1 mg per day and Mirapex not exceed .25 mg per day.
Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms (Horizant, Lyrica or gabapentin will only help marginally in this situation).
It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.
An alternative treatment (which is still fairly new) is to change to a long-acting dopamine agonist. The Neupro patch is the only FDA approved long-acting dopamine agonist for treating RLS (up to 3 mg/day) and may work well for patients who are having augmentation on relatively lower doses of Requip (up to about 3 mg/ day) or Mirapex (up to about .5 mg/day). For higher doses of those drugs, a switch to long-acting Mirapex ER or Requip XL may be helpful (but these drugs are not approved for treating RLS so may not be covered by insurance plans). When transitioning from short-acting dopamine drugs to long-acting ones, the dose of the long-acting drug is started at the lowest dose and may be increased on a weekly basis as needed. The short-acting drug can be used to supplement the long-acting ones until the optimum dose of the long-acting dopamine drug is found.
Check out this link for up to date information on how to treat augmentation from a group of us experts that is available on the web:
Sent: Monday, August 10, 2015 7:32 AM
Subject: RLS morning spasms
You very helpfully advised me when I was struggling with pramipexole and ropinirole. I suffered augmentation and rebound with both of these and my GP (UK) has put me on 4 mg of clonazepam which I have been taking for a few weeks. I am now starting to sleep less well and when I wake I have body arching/spasms. Do you think this is residual from the dopamine agonists or might it have something to do with clonazepam withdrawal.
I woke at 5.15 this morning with quite violent leg movements and canít
get back to sleep because of the spasms. For the first time I was very agitated
this morning and felt oddly anxious although I didnít know what I was anxious
about. I take 2 mg at 6 pm to lessen the leg movement in the evening and 2 mg at
11.00 pm. The GP wonít put me on pregabalin or gabapentin or indeed anything
else as he has referred me to a neurologist.
It is not clear why you are concerned about clonazepam withdrawal if you are
still taking 4 mg per day (have you started trying to cut back?). Clonazepam is
a very long-acting benzodiazepine drug (valium class of sedative/sleeping pills)
that has a very long half-life of over 40 hours which means that it stays in the
body way too long (often resulting in next day sleepiness). Clonazepam does not
really treat RLS but rather just helps RLS patients (or anyone) fall asleep (and
when you are asleep, you donít have RLS, headaches, joint pain or any other
painful problems). The 4 mg of clonazepam is a very high dose and it could be
difficult to get off the drug.
Pregabalin or gabapentin are reasonable choices but you will need a doctor who is willing to prescribe one of them and has expertise with sleep and RLS.
A Reply from Martin
Sent: Monday, September 07, 2015 2:32 AM
Subject: RLS and somatic symptom disorder
You have very helpfully replied to a couple of my queries before. I saw my neurologist a week or so ago and I had a thorough questioning focused on movement disorder bur not specifically on RLS. He has arranged for me to have a brain nuclear scan, an MRI spine scan and a sleep study. He has suggested the possibility of somatization or somatic symptom disorder. I tick all the boxes on the RLS diagnostic IRLSSG sheet and this suggests I have severe restless leg syndrome. How common is the idea of somatization?
Somatization is always a possible explanation for any medical problem
especially when the diagnosis is completely based upon subjective symptoms
complaints rather than objective test results. This is compounded by most
doctorsí lack of knowledge (even many neurologists) about RLS and how to
diagnose this condition.
Given your previous letters, it is very likely that RLS is the correct diagnosis but as noted above one can never rule out a long shot like somatization (just like winning the big lotto may also happen).
Sent: Tuesday, August 11, 2015 10:27 PM
Subject: A very lonely disease
I am 53 and have suffered with WED/RLS for 38 years. I began Mirapex .5 mg at bedtime sometime in 2000 after I discovered a family quirk that we called "twitches" was a documented condition. I quickly joined the RLS Foundation and read anything I could find on the condition. My primary care doctor was unfamiliar with the disease and so we learned together. As my symptoms increased over the years, so did the dosage of Mirapex.
By 2012 I was up to 9 tablets of 1.5 mg taken in three doses. I had developed symptoms that would strike anytime I sat still. I stopped going to movies, avoided plane flights or long car rides and had to watch television standing and rocking side to side. At restaurants I would take repeated trips to the ladies room just to walk the symptoms off. The symptoms were in both arms also. I would spend nights doing toe raises and holding 5 pound weights to settle my arms and legs. I would go night after night with no sleep and get up to go to work the next day. My feet and ankles are ruined by my years of trying to relieve the symptoms.
And during all these years people would make ridiculous suggestions because "someone" they knew read that putting a bar of lavender soap between the sheets would cure it. That was one of the worst parts, they meant well but foolish and annoying suggestions. But my husband knew well the agony I suffered. He'd lay awake hearing the floor boards creek and the microwave beep as I tried to comfort myself with food.
And as I walked the dark house alone, I became more depressed and more withdrawn. By the end of 2014 my symptoms were off the charts and my sleep deprivation caused me to nod off one day while driving. Although briefly, it scared me to death. My primary care prescribed a month of no driving and I was out of work during this time period. I got in with 2 specialists who ended up being my biggest disappointment yet.
So during this month off, I reduced my Mirapex over 5 days until I was completely off, alone. Foolish? Very, and it was 6 weeks I will never forget that scared the wits out of me. I am currently on 2700 mg of Gabapentin taken in three doses, and that's it. It has stopped my daytime symptoms and I no longer get them in my arms. This has been for 4 months, but my night time symptoms are still there. Not as extreme, but they are creeping back.
I have no idea what to do next. I'm at the maximum dose and the side effects
are really tough. I'm on diuretics for the hand and feet swelling but I've
gained weight and still find comfort in nighttime snacks. I am depressed and
exhausted. There is no part of my life that this disease has not ruined, and it
Unfortunately, most doctors including specialists (as you have already
learned) know very little about treating augmentation (the worsening of RLS from
taking a dopamine agonist like Mirapex). and severe RLS symptoms. You might now
understand why I currently do not favor starting Mirapex or Requip to treat RLS
and if they are used, I recommend keeping the Mirapex dose at a maximum of .25
mg (you were on 13.5 mg).
It is remarkable that you were able to get off that high dose of Mirapex on your own. Gabapentin is somewhat helpful but most patients do not absorb the drug very well and doses above 600-900 mg typically do not add much extra help. Horizant (approved for RLS) or Lyrica work much better.
If those drugs are not helpful, then opioids are the next step. Although most physicians are not aware of using opioids for RLS and are typically reluctant to prescribe these drugs, they work very well and are quite safe if prescribed appropriately. There are other treatments available (such as iron therapy in appropriate patients and the Relaxis pad) and virtually all RLS patients should get near complete relief with proper care.
Check out this link for up to date information on how to treat augmentation
from a group of us experts that is available on the web:
Sent: Wednesday, August 12, 2015 6:34 PM
Subject: RLS and insomnia
I'm on Horizant right now, which takes care of the legs and trunk movements. I slept fine for the first 6 weeks of taking Horizant. For the past 5 nights I experienced reduced sleep from 8 hours to 5 hours a night. Can RLS with controlled symptoms effect sleep? Is insomnia common with RLS? What can one do to combat insomnia, since none of the typical hypnotics seem to help me.
Insomnia (and hyperarousal in general) is associated with RLS. Many RLS
patients find that they have significant problems with insomnia after their RLS
symptoms are completely resolved using dopamine drugs or opioids. The RLS group
at Johns Hopkins University thinks that the increase in arousal is due to high
glutamate levels in the brain. Interestingly enough, the alpha-2-delta drugs
(Horizant, gabapentin and Lyrica) all lower glutamate levels (which may be why
they tend to cause sleepiness as a side effect) and thus may be helpful to treat
both the RLS and insomnia (as you have temporarily discovered).
It is not fully clear why the benefit from Horizant did not persist but you could be at the border/edge of the therapeutic dose necessary to help you sleep. Therefore, an increase in dose (you could add a Horizant 300 mg tablet if you donít want to jump to 2 of the 600 mg tablets) might provide the extra sleep inducing benefit that you may need (donít break the 600 mg tablet in half as you will defeat the slow release nature of the pill).
Alternatively, you might add a small dose of a sleeping pill (like Ambien 5 mg) to see whether the previous drugs that have failed may now work in combination with Horizant 600 mg.
Sent: Thursday, August 13, 2015 7:58 AM
Subject: PPI's (Proton Pump Inhibitors like Nexium) and RLS?
just wanted to make you aware that PPI's medication make my RLS instantly worse. Just in case you note down other medications that could make RLS worse. I am going to try the H2 agonists to see if they do the same.
Typically, most RLS patients tolerate PPI medications very well. It is only a very rare patient who finds that their RLS worsens with these drugs. Histamine H2 blockers do not affect RLS.
Sent: Thursday, August 13, 2015 5:23 PM
Subject: CBD oil and RLS?
CBD oil works for my RLS!!! One puff vaporized CBD oil stops my RLS completely for 24 hrs. If I take a puff before bed I will never have RLS. If I skip the puff before bed I will usually get RLS about an hour later. Even after RLS has started, one puff and the RLS stops instantly. I donít have to jog around the room, do deep knee bends or wait any length of time. The RLS goes away as fast as I can get back to bed. When I first started inhaling the smoke I had to suck on a Sucrets for a few swallows to protect my throat but now I donít need to do that. There is supposedly no THC in the oil I purchased but at first I felt a little slow down in time with just one puff so I know there has to be some. After a week of once-a-day use I no longer feel any effect other than a complete halt of RLS.
The tiny stick vaporizer - about the size of a cigarette Ė cost $25.00 and will last indefinitely. The vile of oil cost $40.00 and will certainly last me months. According to my research it is necessary to have a little THC in the oil and the oil must be vaporized in order to get RLS relief.
This CBD oil formula does not help me sleep or relieve my pain. Regular marijuana does help me sleep, relieve RLS and pain but to do that I have to take more than I am comfortable with and then I feel terrible the next day so I am excited to get this relief from the oil. It has been working for two weeks now and will hopefully continue indefinitely.
Perhaps it will help others with the same RLS problems that I have? I pray that it does.
Thanks for your information as there is still somewhat sketchy information
about the use of marijuana derivatives for treating RLS.
I do have one patient who has been using CBD oil recently but she puts it under her tongue. This seems to work quite providing RLS relief without having to inhale any fumes.
A Reply from Connie
Sent: Monday, August 17, 2015 6:54 PM
Subject: RE: help
Well, it looks like I spoke too soon. The vaporized oil stopped working and I have RLS all night long every night, just like before. Since I stopped getting relief from 22.5mg/day methadone it does seem that my body develops resistance rather quickly. My Post stroke central pain syndrome really has my brain mixed up Ė so the battle continues. Now I am trying some oil and marijuana leaves in tea (suggested by a Chinese Medical doctor friend). I am really not in a good place right now. Sleep is really a precious commodity.
Sorry to hear that. Let us know how you do.
A Reply from Connie
Sent: Friday, September 11, 2015 3:08 PM
Subject: RE: help
Hurrah! Iíve discovered that not all CBD oil is the same Ė not even from the same manufacturer from batch to batch. I didnít give up trying and subsequently have found complete RLS relief with other CBD oil sources. What an amazing thing Ė to be able to relax!
Since CBD oil isnít legal in all states I am reluctant to put a word in the RLS.ORG web site unless it meets acceptable guidelines. I donít want to write anything there that would have to be censored. I might also be a miracle for someone else so I would like to mention my experience with it.
Have you heard of the Fisher Wallace stimulator? It is being advertised for insomnia, anxiety and depression. It is expensive ($600.00) but would be worth it if it really helps me sleep. It would be fantastic if it really did what they say it does. You seem to know a lot about everything pertaining to Sleep so I figured you would know if it is worth a try.
It is interesting to hear about your responses to the different types of CBS
As far as the Fisher Wallace stimulator, this seems to be making the rounds currently in depressive, insomnia and RLS circles. There are only a few (like one for each of depression and insomnia and none for RLS) recent studies and they are quite small (28 subjects). These devices tend to get their acceptance from being on the internet and getting anecdotal approval. However, it is quite likely that for all the conditions it is used for; there is a very strong placebo effect.
I suspect that larger studies will show that it is a minor benefit at best and likely most patients will find it not worth the cost.
Sent: Sunday, August 16, 2015 6:13 PM
Subject: Medical marijuana for RLS
I understand that anecdotally many people are finding success for RLS with medical marijuana. I am legally able to use it in Canada but vaporizing is the only legal method. When i was augmenting badly on the Neupro patch, I tried MM but without any success.
The strain was mostly CBD. I have been completely off the DA for a month and am taking only clonazepam. I am slowly weaning myself off the benzo because off tolerance/addiction issues. I am thinking of trying the MM again but wonder what strain would be best for RLS. Do you have any suggestions?
I can't take DA's; Lyrica scrambled my brain; effective opioids are hard to
get in Canada and rather scare me; benzos and their modern kin seem problematic
for the longer term. MM seems worth trying but what strain??
Typically, inhalation seems to be the most effective way of getting RLS
relief from medical marijuana. It is not clear which component of marijuana
provides the benefits (CBD or THC) but I have had some recent patients tell me
that CBD has been effective both with inhalation and with oil placed under the
You should be careful with benzodiazepines and especially clonazepam as you can become quite dependent upon the drug and it has a very long half-life which tends to make patients sleepy during the day.
A Reply from Larry
Sent: Monday, August 17, 2015 1:08 PM
Subject: Re: medical marijuana
Thanks for the advice about clonazepam. I have already begun weaning off. The most I ever took was 1/2 of a .5 mg. pill at supper and a whole .5 mg. pill at bedtime. Now I take 1/8 of the supper pill and 3/4 of the later pill. I plan on quitting the supper pill this Wednesday and reducing the later pill by 1/8 each week beginning next Wednesday.
I hope that this is not too fast. Clonazepam was given to help me get off the DA patch, which I managed to do. The question is how do I know when my baseline RLS has been reached. I am giving myself another two or three months to find out.
Most patients come back their baseline in a few weeks. It can take up to 1-2 months, but it is quite unlikely that further improvement will occur after that.
Sent: Thursday, August 20, 2015 7:07 AM
Subject: RLS during the day as well as evening
I am a 64 year old female who has had RLS since my thirties. I have two sisters who are treated for it as well. I have taken 0.75 mg of Mirapex for several years with marginal results. Have also tried Requip which didnít really work well for me.
If I drive any distance my legs start to move and jerk while driving. My
husband and I travel quite a bit and within one hour of sitting in the car it
starts; regardless of time of day.
I cannot sit down after dinner with company; have to walk around so that my legs donít drive me crazy. I am determined to get a handle on this . Am otherwise healthy and active. Can walk 8 to 10 km without effort.
I have discussed with my GP and now going to add gabapentin. Starting with one dose taken with Mirapex at 7 pm. I have not determined plan of action yet for traveling by car.
Adding gabapentin might be helpful. Many people do not absorb the drug very
well especially at higher doses which are often necessary. Lyrica would be a
better choice (up to 300 mg in the evening).
Your daytime (and even nighttime) RLS would be much more easily resolved (and you could travel without any problems) with opioid therapy which is quite safe if prescribed carefully and monitored appropriately by a knowledgeable physician. However, in Canada, it is very difficult to get doctors (other than pain physicians) to prescribe opioids).
A Reply from Maureen
Sent: Friday, August 21, 2015 1:02 PM
Subject: RE: RLS during the day as well as evening
Thank you so much for your quick reply. I have been reading all the information provided on the website also. I have taken gabapentin 300 mg at 7 pm for the last two days and have experienced absolutely no RLS symptoms for almost 48 hours. I drove home at 9 pm for 35 minutes with ease. I realize that it is too early to evaluate but I am cautiously optimistic.
This is the first time in many years that I have had no occurrences of any
kind. However, I am relieved to know that there are more options out there for
me if this relief does not continue.
If you are doing well for the past 2 days then it is likely that you will continue to do so for the near future. You might need some minor adjustments of your gabapentin dose (like up to 400-600 mg) but you should be fine for quite a while.
Sent: Friday, August 21, 2015 2:28 PM
Subject: Re: RLS and Thyroid connection
I would be interested to know of your thoughts on a RLS/Hypothyroid connection. In a survey on a forum I am a member of 105 out of 111 respondents had both hypothyroidism and RLS. Do you know of any link?
There is a minor link between thyroid disorders and RLS. Some of this may be due to both problems being more common in women. However, we do not really understand why RLS is more common in any disorder (except for some minor insights with iron deficiency) so it is very difficult to say why there might be some link between thyroid disease and RLS.
Sent: Wednesday, August 26, 2015 9:54 PM
Subject: What I have tried isn't working
I am 34 year old female in good general health, despite having varying degrees of restless legs for as long as I can remember. Over the last 5 months I have eliminated caffeine and have been exercising 6 days per week without any marked change to my symptoms. Recently the lack of sleep and overall frustration was enough to seek my doctors assistance.
He tested my iron levels and several other blood related tests which all proved normal. He tried me on Requip and Mirapex which both eased symptoms but caused terrible stomach pains and vomiting. Although my symptoms are episodic, the recourse is effecting my life negatively . Not sure what else I can try at this point?
Since the short-acting dopamine agonists cause GI upset, we should probably
stay away from this class of drugs which includes the long-acting Neupro patch
(although there is a chance that the slower release Neupro might not cause
similar side effects).
The next choice is either alpha-2-delta drugs (Horizant, Lyrica or gabapentin) or opioids. If you do elect to try opioids, you could try the lowest level one, tramadol.
Sent: Thursday, August 27, 2015 5:44 PM
Subject: Mirapex, Acupuncture and depression
I am a 31 year old male. I've had RLS for about 3 years. However, it only became worse in the past eight months after I did Electro Convulsive Therapy for depression. After that it was out of control. First tried Xanax but it did not help, so I went on Ativan and 2 pills work great to knock me out but now I only use it in emergencies due to augmentation. Next I tried Requip, it got rid of the RLS but gave me cold sweats, anxiety, irritability and hypersensitivity. I think it also gave me the munchies so I moved to Mirapex (.125 mg). It works great for RLS (No augmentation yet) but causes insomnia and the anxiety issues are still really bad (and slight "itchiness"). I have to add though that I think it's helped me lose weight.
I started Temazepam which helps but lately seems to not be as effective. Went a few nights without it and noticed that the hypersensitivity and irritability got worse. I've tried slowly bringing in Gabapentin while slowly taking less Mirapex but by the second night without Mirapex the RLS was back. Not sure if my RLS came back because Gabapentin does not help or if it just got worse (Like you've mentioned what could happen when people try to go off of Mirapex).
The Gabapentin does seem to help with sleep but even with one pill (100 mg) I not only feel sleepy but also lethargic and weak. My neurologist recommended only two other treatments, the Neupro patch and Acupuncture. He mentioned though that if both Requip and Mirapex give me hypersensitivity and anxiety then Neupro would do the same.
Are there other meds that could be as effective as Mirapex for me without these side effects? Or if I go off of Mirapex will my RLS most likely just get even worse? Do you know what are the highest rated or most effective meds for RLS? Also, what about Acupuncture? I couldn't find anything on the page about it.
Lastly, is Wellbutrin the best bet for Anti-depressants that won't cause RLS?
I assume that you use the Ativan only occasionally due to concerns with
tolerance, not augmentation (which only occurs with dopamine agonists like
Mirapex or Requip). The benzodiazepine drugs like Ativan and Xanax do not treat
RLS but merely allow an RLS patient to fall asleep due to their sedative
effects. We try to treat the RLS directly so that sedatives/sleeping pills are
needed infrequently or not at all.
Since you have had side effects with the 2 short acting dopamine agonists, it is certainly more likely that you may have similar issues with the Neupro patch. However, Neupro releases its drug (rotigotine) very slowly and does not have peaks (which often cause more side effects) so many patients may do better on this drug than the older short acting ones. It may be worth doing a short trial.
Acupuncture has not been found to be helpful for RLS both in the literature and in my clinical experience (except for a rare case which could easily be due to the placebo effect).
You are correct about the issue with trying to stop Mirapex. Once you are on a dopamine agonist, RLS changes significantly. Stopping the drug (even while at low dose and doing well) causes a marked worsening of RLS that usually lasts a few weeks (but can last a few months). Gabapentin may be a good drug for you but it is not up to the task of treating the increased RLS that occurs then withdrawing from Mirapex.
To get off Mirapex, you may have to suffer for several weeks or longer until the drug gets out of your system. You can use gabapentin as it will decrease the RLS symptoms somewhat but it will still be a difficult time. Opioids (oxycodone, methadone, etc.) make the transition almost painless but most doctors are not knowledgeable in their use for RLS and are not willing to prescribe them.
Wellbutrin is one of the very few antidepressants that does not worsen RLS. However, it does not always help depression and may worsen anxiety problems.
Sent: Thursday, August 27, 2015 7:04 PM
Subject: Wellbutrin and SSRI relationship to RLS
I actually don't get RLS a lot but have been changing medications which seems to have caused a very intolerable episode at the moment and it is causing sleep disturbances. I have recently stopped taking the SSRI Celexa and am about 2.5 weeks along without taking any of that medication. I am dealing with most of the reported withdrawal effects however. At the same time that I stopped Celexa I increased the dose of Wellbutrin XL I was also taking from 150 to 300.
Given the timeline, is it more likely the added Wellbutrin is causing the RLS or the lack of serotonin? None of it seems to make sense since the added dopamine in Wellbutrin should be helping and RLS sometimes comes from too much serotonin and not a lack of it. Could it be something else related to the brain buzzes a person feels after not taking an SSRI? I especially feel it between my toes and sort of in my abdomen bladder area.
It is somewhat difficult to figure out what is causing your troubles.
Wellbutrin does not worsen RLS and may occasionally improve RLS symptoms as it has no serotonin action but does have a little dopamine effect.
Stopping an SSRI like Celexa typically improves RLS dramatically. You could be having a serotonin withdrawal syndrome and should discuss this with your doctor.
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