If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Sunday, February 28, 2010 10:55 PM
Subject: DHEA and RLS?
Do you know if taking DHEA exacerbates symptoms of RLS? Has anyone had success using amantadine for RLS?
I know this may sound crazy, but has anyone ever used amphetamines for RLS? They do increase dopamine levels, I believe.
There is no clinical information about whether DHEA has any
effect (good or bad) on RLS.
As far as amantadine, this is from our website's RLS Treatment page:
Sent: Tuesday, March 02, 2010 11:16 AM
Subject: Arm and trunk symptoms?
After years of treating my RLS in my legs with Mirapex .25 in mid afternoon and .375 @ 8pm , I have started to get more intense gnawing feelings in my arms and trunk also. Just recently, the symptoms have started earlier in the afternoon and earlier also in the evening. My periodic limp movement problem has also increased.
Could you give me your opinion on the change of my symptoms? What could I possibly change my dosage of Mirapex to. I might add, I have been taking 50mcg of Duragesic for a failed fusion surgery for 3.5 yrs. I am hoping my new symptoms have nothing to do with my Duragesic medication.
You have classic signs of augmentation which is worsening of RLS
due to taking a dopamine drug like Mirapex. The treatment is to stop the Mirapex
and within a week or two, your RLS will return to its pre-Mirapex level.
However, stopping the Mirapex will cause a week or two of marked worsening of your RLS symptoms before it settles down. We usually use potent opioids but you are already on a quite potent one. You may have to increase the dose for a week or two.
You may also want to consider adding an anticonvulsant like gabapentin or Lyrica.
A Reply from Bill
Sent: Wednesday, March 03, 2010 4:59 PM
Subject: RE: Arm and trunk symptoms?
I would very much appreciate your position when a neurologist would advice one to use a dosage of .75 Mirapex, 3x per day for my below mentioned condition. I am puzzled as to the response of the neurologist.
Unfortunately, even most neurologists who should be very knowledgeable about treating RLS do not really know that much about the augmentation problem. This augmentation issue occurs only with RLS and not with Parkinsonís disease (which is the other approved use for Mirapex and which neurologists are much more expert on than RLS).
Sent: Wednesday, March 03, 2010 8:25 PM
Subject: Re: Requip vs. Mirapex
I have been taking 1/2 Percocet at night for RLS for over a year with no need to increase in dosage but find the side effect of extreme constipation is difficult to put up with. I am taking Senakot S and Miralax for this side effect but feel like it might not be such a good idea to take Senakot on a long term basis. It's a shame to discontinue the Percocet though since it really helps with night time RLS as well as some hip pain I have. I am going to ask my doctor to prescribe either Mirapex or Requip for me to try for my restless legs syndrome.
1. In your opinion, is taking senna for years at a time a
terrible thing for a person to do?
2. If you had your choice of starting a patient on either Mirapex or Requip for RLS, do you prefer one over the other?
3. Which one of these two medications, Mirapex and Requip are apt to cause the most drowsiness since I do need help going to sleep?
1) There is not a lot of evidence that senna is harmful when
taken for years. It is a stimulant and there have been some concerns that
chronic use may make the bowel muscles less responsive or active when stopping
the drug. However, this has not been researched very well and many patients have
used this drug for decades without problems. We still recommend the use of
increased fiber (Metamucil, bran cereals, etc.) and higher doses of Miralax.
You might also try switching to another opioid (such as methadone) as they all may have varying degrees of constipation.
2) Mirapex and Requip are very similar drugs that act on the same dopamine receptors. Although many patients prefer one drug over another, it is impossible to predict if one drug will work better or cause side effects. Most patients find that these drugs work about the same but as stated before, a minority do prefer one over the other (and some dislike them both equally).
3) Drowsiness is an unwanted side effect that can occur equally with either drug in a small minority of RLS sufferers. It is impossible to predict who will experience sedation from taking these drugs and they can also cause insomnia (hard to explain how a drug can have these opposite side effects). If you want a drug to help your RLS and insomnia, then gabapentin or Lyrica may be better choices.
Sent: Saturday, March 06, 2010 7:29 AM
Subject: Looking for some direction.
Sorry if I get long-winded here. I've been on some sleep message boards and one of your very happy patients directed me to your site. It's been 7 months since my first consult with the local sleep doctors and I still don't know what's going on. I just wish they would tell me if there is really nothing going on or if I do have issues that need treated. I know you can't give me medical advice, but I just need to know if I should pursue treatment or forget about it. In a nutshell, here's what's going on.
Months ago, I was sent for a sleep study because I snore and I have EDS. Well, it ruled out apnea, but showed leg movement. The doctors weren't very helpful in explaining the results of the study, but suggested I try Requip for "some leg movement". I asked for a copy of the study and got the Requip. Couldn't tolerate the Requip, but reading the study made me think I wasn't sleeping much. So, to the doctor. He suggests another sleep study and a MSLT.
The second study came out similar to the first. Here are some of the numbers. They sound sleep-disrupting to me, but maybe it's nothing bad. Just wish the doctors would explain. I slept about 7.5 hours, had 443 arousals, of which 212 were spontaneous. The arousal index was 58.5/hour. I had 241 total leg movements and 16 episodes of periodic leg movement. There were 79 EEG arousals associated with periodic limb movements of sleep. Doctor's comment in report said "patient did demonstrate marked limb movements at 31.8 per hour of sleep". Again, OSA ruled out.
During the MSLT, I slept during all five naps with an average sleep latency of 8 minutes, but no REM sleep. At follow-up, I was told that I should have been taken off Zoloft because it suppresses REM sleep, so it made the MSLT not very helpful. Comments mentioned possible idiopathic hypersomnia.
When I finally get to see the doc again, he said we'll try to treat the legs first before exploring idiopathic hypersomnia. He puts me on Mirapex and tells me to come back in 3 months, or call sooner if I can't tolerate it; says I need to give it one month to see if it will work. Took for a week and then I couldn't sleep. Called in and they told me to stop; no suggestions for what to do next. They told me the main doc was out of town and they would call me back to set up another appointment.
I never thought I had RLS, but they never really asked me any
questions about symptoms. Every morning and some evenings, my legs feel heavy
and achy. If I have to sit in a chair or on bleachers for any time, I can't sit
still. I have to keep adjusting my position because my legs feel uncomfortable
and a bit achy and tingly. When I go to bed and lay down, my legs feel fine.
Jodi in PA
You may have RLS but if it does not prevent you from falling
asleep then it is clearly not part of your sleep problem.
The marked limb movements of 32/hour do not mean much as we are only concerned with the limb movements that caused arousals (since you had 79 PLM associated with arousals during 7.5 hours, you actually had a PLM arousal index of 10.5/hour which is very mild) and that does not seem to be your problem. The high amount of arousals at 59/hour may (this is not well understood) a problem and be leading to your daytime sleepiness but other factors that may be difficult or impossible to determine may be responsible.
Your diagnosis may very well be idiopathic hypersomnia (which is not that well understood and is a diagnosis of exclusion) and should respond to drugs such as Provigil or Nuvigil. You should discuss these issues with your sleep doctor and if he is not sufficiently available or helpful, find another one.
Sent: Sunday, March 07, 2010 11:04 AM
Subject: Question about medicine use
I use now 4 of the 0.25 mg ropinirole against RLS but have augmentation and arthralgia as side effect. My knees and hip joints are very painful. I have used Pramipexole, but I had the same problem. Recently I started using Lyrica in addition. I use now 3 of the .75 mg. I want to stop ropinirole and see if Lyrica will help. You suggested to stop abruptly with Ropinirole and use opioids to relieve the RLS then. But do I need to stop with Lyrica then as well? Or can I increase the dose Lyrica and stop gradually with ropinirole?
Typically, I would have my patients stop the ropinirole abruptly and use opioids for a week or so to overcome the short term worsening of RLS. After that, I would gradually increase Lyrica if necessary. I usually use Lyrica at 75 mg twice daily and the increase to 150 mg twice daily if needed.
Sent: Friday, March 12, 2010 10:49 AM
Subject: RLS and Compulsive Shopping
Iíve had RLS for about 4 years now and am 47 years old. Iíve taken Requip or the generic ropinirole to help get it under control so I can sleep at night rather than toss and turn and drive my spouse crazy with such crazy leg movements. I recall when I first started the medication, the paperwork stated that a side effect could be excessive gambling. While that is not my issue; I seem to have a serious problem with shopping.
I have this urge to find a good bargain and buy things all the
time. I donít buy ridiculous stuffÖbut I clearly buy things that I donít need
and shouldnít be spending my money on it the first place. AND I always justify
it; because it was on sale, or a great bargain and will use it or give it away
to a friend who can use it. Iím absolutely thrilled when I get good deals on
things; even though I didnít really need them in the first place.
ANYWAY, I suspect my RLS medicine is to blame and donít know what to do about it. If I need to be taken off ropinirole; then Iíll go crazy at night because of the RLS side effects. The stress from not being able to control the leg urges & movements and lack of sleep will no doubt cause my migraine headaches to get out of control.
Do you have any advice on how to handle this? Is there a different or better RLS medication to use, one that will NOT cause me to ďNEED to shopĒ?
Unfortunately, it is most likely that your shopping problem is
due to Requip. The problem with the dopamine agonists is that they cause a lack
of impulse control. Excessive gambling is only one of many impulse control
problems noted with these drugs. Compulsive shopping is actually one of the more
common manifestations of this issue.
If your compulsive shopping problem is causing you difficulties and you donít want to live with it, you must get off Requip. The alternative dopamine agonist, Mirapex would likely also cause the same problem but you can only figure this out by trying it.
There are good alternatives to the dopamine agonists. Anticonvulsants (gabapentin, Lyrica) or painkillers (tramadol, opioids) work very well for many RLS patients and are reasonable choices for you.
Sent: Wednesday, March 17, 2010 7:34 AM
Subject: RLS & Nexium
I noticed your statement about Nexium not having an effect on RLS. I disagree completely. I recently stopped taking Nexium in favor of another similar drug and noticed a marked reduction in my symptoms. I think this needs to be checked by researchers. It may not affect all people, just some.
We will post your letter to see if other RLS patients have experienced similar problems with Nexium. It is very likely that this is an unusual problem as I have seen many patients with RLS who take Nexium or similar PPI anti-acid medications without any difficulties. However, we can only find out about such RLS interactions by hearing from patients like you.
Sent: Tuesday, March 23, 2010 7:25 AM
Subject: Depression/anxiety with RLS
I have been a suffer of RLS for some 35 years, now 24/7.
At different times I have felt that I am either a little depressed/anxious, not sure which, but definitely not 'at myself'. I don't know if the chronic condition of RLS is contributing or its to do with poor sleep, or if the RLS has nothing to do with it.
I have seen my GP who was very understanding and indeed felt
that I needed an antidepressant. I had printed out and taken with me the portion
from your web page with regard to antidepressants. She read this with interest
but had to state that Wellbutrin is not licensed in the UK for depression
although she did say that she wondered what the dosages would be. It is only
licensed here for smoking cessation.
My GP prescribed me citalopram (Celexa) commencing at a low dose of 10mg daily and to go back and see her in 2 weeks. She understood my concern with regard to this affecting my RLS symptoms and said to go back sooner if RLS got worse. I take 200mg tramadol daily as part of my RLS treatment (along with ropinirole). GP prescribed me some extra tramadol to deal with any extra RLS if required.
When I read the information leaflet in the citalopram it said not to take it with tramadol, so I went back into the medical practice and queried this. GP was with another patient and the receptionist sent her an email while I waited for the response, which was that it was ok to go ahead and take the citalopram and the tramadol.
Also, for my future GP appointment, could you advise what the Wellbutrin dosages would be for depression, just in case there may be a chance that she would go for the Wellbutrin should the citalopram not be successful with regard to the RLS symptoms.
The dose for using Wellbutrin for depression starts at 150 mg
daily (we use the XL version that lasts 24 hours). If that does not help, the
drug may be increased to 300 mg daily or even up to 450 mg per day.
Celexa often worsens RLS but some patients do not seem to suffer from this problem (so you may get lucky). Taking Celexa and tramadol together increases the risk of seizures (typically not a big problem in someone without known epilepsy) and the serotonin syndrome (caused by excess serotonin which is present in both drugs). Although your dose of Celexa is low (and that is the more serotonergic drug), your dose of tramadol is getting on the high side so you should be cautious.
Other antidepressants that may be considered are desipramine and possibly nortriptyline and protriptyline.
A Reply from Betty R.
Sent: Tuesday, March 23, 2010 8:20 PM
Subject: RE: Depression/anxiety with RLS
1. My dose of citalopram/Celexa is low but it is possible that it may be increased. You have suggested that we could also consider the antidepressants desipramine, nortriptyline, and protriptyline. Am I correct in assuming -
(a) that these are not serotonergic drugs and would be ok to take with the tramadol.
(b) that they would be available in the UK on prescription as an antidepressant.
2. You have indicated that my daily dose of 200 mg tramadol is getting on the high side and that I should be cautious.
(a) Do you mean cautious with a daily dose of 200 mg tramadol used together with the Celexa, or just cautious that the 200 mg tramadol in general is high. My ropinirole dose is 4.75 mg spread over the 24 hours, and I take the tramadol at 50mg/2pm: 100 mg at 6pm: and 50mg at 10 pm. The tramadol helps a lot, certainly the 100 mg at 6 pm gets me through the evening.
3. If you feel it is the daily 200 mg tramadol that is getting a bit high. regardless of the citalopram, And I feel that it takes this dosage of 200 mg tramadol to provide the required relief, not perfect but to a 'manageable level'.
Is it possible that the tramadol itself should be changed to something of equivalent strength with less serotonin:
a) to something which would not interact with the citalopram,
b) If so, What pain relief would you recommend that may be available here in UK, and what would the equivalent dosage be to 50 mg tramadol/100mg tramadol.
I read on the forums about hydrocodone/Oxynorm/oxycodone/Fentanyl, but don't know their availability on prescription in UK, and also don't know whereabouts they are on the scale for pain relief, compared to tramadol.
Thanks again for your assistance. I am fortunate to have found you, and also that my doctor is willing to work with your indications.
1) The older antidepressants desipramine, nortriptyline, and protriptyline are tricyclic secondary amine antidepressants that are thought to not worsen RLS as they cause less serotonin release. For this reason, they would be more compatible with tramadol. They should be available in the UK but you should check with your doctor.
2) Your daily dose of tramadol is getting to the high zone but if taken alone, you could go a little higher (I would not recommend exceeding 300 mg per day). The concern is taking that dose in combination with tramadol.
3) You should probably stick with the tramadol for now and see how you do with low doses of Celexa. You could change to the older antidepressants discussed above or change tramadol to an opioid but many of them also cause increased serotonin. Most of the opioids are available in the UK but doctors are quite restricted in prescribing them.
Sent: Wednesday, March 24, 2010 8:34 PM
I am wondering if I should have my doctor change prescriptions for me. I suffer from RLS and PLMD and take 2 pills of 25/100 Sinemet per night. (1 pill caused extreme headaches, but 2 worked wonders!) I am now experiencing augmentation, as well as rebound effects. What also worries me is being on Sinemet to begin with. Even though it was my "wonder drug"
before the augmentation and rebound effects, is it not the worst RLS med to be on for long-term use?
Also, I would like to get back on Lexapro, but am worried about drug interaction and worsening of RLS symptoms. Would Neurontin be the way to go instead of Lexapro? (Lexapro was the ONE SSRI that I dubbed my "happy pill"....because it really was!)
I am also considering having another baby in the next year. (I didn't have RLS yet with my first 2 children, so this wasn't an issue then.) What medication is safest? Being that I am almost 36, I have serious concerns as it is about higher possibilities of birth defects, etc. Taking a category C RLS drug is out of the question, but I can assure you, so is going without my medicine for it! Would trying for another baby even be worth the risk???
Sinemet is a good RLS drug for intermittent use but very
few RLS experts prescribe this drug for daily treatment of RLS symptoms due to
the almost universal problem with augmentation. Requip or Mirapex alone would be
Lexapro tends to cause RLS symptoms to worsen but the only way to determine this is to try it and see what happens. If it does cause trouble, Wellbutrin would be the next choice. Neurontin does help RLS but is not much of an antidepressant.
Methadone or oxycodone are the only choices for pregnant women suffering from RLS. They have some minimal risk but most do well when taking these medications for severe RLS symptoms during pregnancy.
A Reply from Kristin
Sent: Friday, March 26, 2010 4:47 PM
Subject: Re: ARGH!
Unfortunately, I saw my doctor before reading your reply though. He took me off the Sinemet and put me on Klonopin.
Klonopin?! I know that's a benzodiazepine and don't see how
that will treat the RLS symptoms, but I'll give it a try. If it doesn't work,
I'll call him and let him know your suggestion to try Requip or Mirapex.
Although Klonopin is prescribed by many doctors for RLS it is not actually an RLS drug (and as you have already noted, it does not actually help RLS but only acts as a sleeping pill to put RLS patients to sleep). This is a drug that most RLS doctors do not prescribe as it has a very long half-life of 40 hours so it causes daytime sleepiness very easily. Your doctor may need some help to learn more about treating RLS.
A Reply from Kristin
Sent: Monday, April 05, 2010 2:06 PM
Subject: Re: ARGH!
Update: The only thing more frustrating than having RLS is having RLS while drugged up on Klonopin. Not surprisingly, it did nothing but make the nights harder to get through. I went back to see my doctor to speak with him about Requip or Mirapex and he agreed to Requip (.25 mg per night). This did absolutely nothing for me. In fact, I took it upon myself to gradually increase the dosage. When I got up to 1.5 mg, the RLS calmed down enough that I could live with (or rather, sleep with), although my legs didn't just "shut down" the way they always did on Sinemet. When I called to inform him of this, he put me back on Sinemet and made an appointment for me with a neurologist.
When I was taking the Sinemet, I was taking 2 tablets of 25/100 at bedtime (taking only 1 pill caused headaches). Even though that still worked for me at night, it got to the point that when I woke up in the morning, my legs were bad again and I felt the need to take the Sinemet again for daytime hours as well.
My questions for you this time are:
1. Is Sinemet even safe to take? I guess being on Levodopa has me a bit concerned. And if so, what dosage would be safe to take at night as well as during the day?
2. What is a safe dosage for Requip? According to my doctor, "if you need that much Requip, you need to see a neurologist". Frankly, I'm okay with that because, clearly, he doesn't appear to be very well-versed in RLS care.
3. Any suggestions or advice? My neurologist appointment is on the 24th of April. Is there anything that you feel I should bring up with him?
Requip is generally increased up to 4 mg before considering
the drug a failure. If 1.5 mg worked somewhat, it is quite likely that a higher
dose (2-3 mg) may do the trick. If not, Mirapex is still worth trying as some
patients do respond better to one dopamine agonist than another.
As I stated before, I would not recommend taking Sinemet on a daily basis as it will surely worsen your RLS symptoms (called augmentation). This problem occurs in almost all patients who take 2 or more Sinemet 25/100 tablets per day.
Other choices include the anticonvulsant drugs (gabapentin and Lyrica) or the painkillers (opioids or tramadol).
Your primary care doctorís decision to refer you to a specialist is good one as he is clearly beyond his depth on this treatment (nothing to do with your dose of Requip but rather his lack of understanding of the correct dose range for treatment). The neurologist is a good choice for the referral but the level of knowledge may vary considerably even within this group of specialists (I have lectured to many groups of neurologists around the country and have been surprised how good some are compared to how little others know about RLS).
Sent: Thursday, March 25, 2010 1:30 AM
Subject: Requip patch
I've been taking Requip and Ultram for about 6 years now to control my RLS. I'm taking it 3 times a day because of early afternoon and early morning symptoms. It is very difficult getting to sleep. Then when I do finally fall asleep, I cant sleep more than a few hours without my RLS waking me. Then it takes another 2 hours for another dose to kick in. Is there a Requip patch? I would love to stop the roller coaster of medications wearing off.
There is no Requip patch but there is a 24 hour version of Requip called Requip XL. It is approved only for Parkinsonís disease patients but we have used it successfully for RLS patients with around the clock symptoms. There is also a new Mirapex ER (Extended Release) that works for 24 hours and would be another choice. The Neupro patch (contains rotigotine which is similar to Requip and Mirapex) which lasted 24 hours may come back in the near future so that would be an additional option (hopefully soon!).
Sent: Friday, March 26, 2010 2:19 AM
Subject: Knee replacement
I am 57 years old. I have severe restless legs- I take 15mg of methadone daily. I have to have a knee replacement. My doctor has told me that with the severity that I have RLS, I will probably have a huge problem with RLS. I might have it permanently and its possible the medication will not be able to control it.
The physician assistant told me I will probably have issues with pain control since I have been on pain medication for 13 years (ultram-11 years, methadone 2 years). Do you have any experience with people that have had knee replacements? If so, do you think I am in for the kind of problems they are saying I may have.
Typically, we do not have much problems with patients undergoing immobilizing surgery such as knee surgery as opioids are given post-operatively which controls the RLS symptoms. In your case, you will need higher doses of opioids due to your chronic methadone use but that should not present too much of a problem as the increased need for opioids will be short lived.
Once you get your mobility back, your need for methadone should go back to baseline. You may need to take as much as 30 mg per day but that should not present any problems for the short term.
Sent: Saturday, March 27, 2010 3:26 PM
Subject: Sleeping pill for RLS patient?
I am currently taking Gabitril for restless legs. it works well but I need a sleep medication. Ambien only works if I take 15 mg. I was thinking of taking the combination of Restoril and Gabitril.
Restoril is a reasonable choice but it takes about 45-60 minutes to kick in so must be taken in advance of sleep. Also, it is a benzodiazepine drug and dependence and tolerance may occur with daily use. Another good choice (better than Restoril) is Lunesta which is more similar to Ambien but has a longer half-life.
Sent: Monday, March 29, 2010 7:36 AM
Subject: Nexium and RLS
I wanted to echo David K's comments on Nexium having an affect on RLS. I was prescribed Nexium because when I was on Requip/Mirapex it made my acid reflux even worse. Taking Nexium made my RLS worse whenever I took it even though I was on an RLS medication. I was taking 40 mg per day and scaled back to 20 mg.
Eventually I tried to take the lower dose of Nexium once or
twice a week and on those days I took it, I had a miserable night with RLS. Hard
to figure which was worse staying up all night with RLS or staying up all night
with acid reflux. In the end I had to stop taking Requip/Mirapex.
Thank you for your email letter. We will post it to see if others have experienced similar problems with Nexium or other PPI anti-ulcer medications.
Sent: Wednesday, March 31, 2010 9:44 AM
Subject: RLS symptoms
I am so glad I found your website. I thought I was going crazyÖ No one seems to understand and itís all in my head. I have not told my primary yet because I listened to everyone else. My symptoms are not as bad as some, but I do have trouble falling asleep several times a week. Always starts with my legs, I have to keep stretching or get up.
I was up until 3:00 am last night. I also get the jerks, thatís something my husband has noticed as well. The last few times it has affected my arms and my trunk. What is going on? I am exhausted. I do have a few health concerns. I am on atenolol for high blood pressure and Zoloft.
Some of the meds described in your blogs scare me. Is there
any way to treat it once it starts or do you have to take meds every night just
It is possible that the Zoloft (like most of the
antidepressants) is worsening your RLS. A change to Wellbutrin (if it works as
well for you as does Zoloft) might markedly reduce your RLS symptoms and you
would need no medication.
If you do need medication to treat your RLS symptoms intermittently, then painkillers (tramadol or opioids which should not be a problem if taken in low dose only a few times per week) or Sinemet are very good choices as the act quickly.
Sent: Thursday, April 01, 2010 5:30 PM
Subject: Lyrica for insomnia
I currently take 1800 mg of Neurontin (600 x 3) daily. This has worked quite well, for several years, in helping control my RLS symptoms. However, I suffer chronic insomnia and have tried most of the more common sleep meds as well as Klonopin without much success. My neurologist suggested that I try Lyrica at bedtime in hopes this will help me sleep.
Although Lyrica does have sedation as a side effect, that does not seem to occur as often as with Neurontin. If you wish to get more sedation for helping you sleep, it might be better to increase the Neurontin dose (although we usually do not recommend increasing this drug solely to help you sleep rather than for RLS symptoms). Furthermore, we typically do not add Lyrica to Neurontin as they are both in the same class of drugs but rather use one or the other.
Sent: Friday, April 02, 2010 11:10 PM
Subject: Bicycle Riding and RLS?
Sometime back I wrote you to tell you that my son, my neurologist, and myself, have beaten or "knocked back" RLS by simply riding an ordinary bicycle for exercise (Page 89). As for longevity of no RLS, myself and my son, we have no RLS --literally, zero RLS -- for several weeks after we stop riding but it will start again if we don't ride, and as for my neurologist, I don't know if she is still RLS free nor if she's still riding her bike as a stress reliever.
Now, last night on the news, Jay Alberts, Ph.D, of the Cleveland Clinic, has discovered that very much disabled Parkinson's patients are not only finding tremendous relief by riding ordinary bicycles, but are actually able to go on 50 mile biking marathons showing no tremor symptoms whatsoever. The Doctor knows it is the pedaling action, but just why is not yet clear.
We all know our RLS affliction is somehow related to Parkinson's, in that Parkinson's medications help RLS sufferers more than any other drug, and that we too have dopamine receptors that are not functioning correctly, just as do Parkinson's disease patients.
Although there are some similarities between RLS and PD
(Parkinsonís disease) in that they both respond to dopamine drugs (but PD needs
much higher doses than RLS), they are more different than similar. In PD the
brain has limited dopamine and increased iron while RLS has normal amounts of
dopamine and decreased iron stores. RLS responds to many other drugs such as
opioids, tramadol and anticonvulsants which do not help PD.
We know that mild to moderate regular exercise helps many RLS sufferers but vigorous exercise helps it. Therefore, it is quite possible that bicycle riding may help RLS patients due to the exercise effect. I have many RLS patients who do bicycle but have not found any benefits (such as you have described) in addition to the general exercise value.
However, I will post your letter to see if others have experienced any significant benefits from bicycle exercise.
Sent: Wednesday, April 07, 2010 10:13 PM
Subject: Extreme SEVERE RLS
I am a fifty seven year old male who has had this since my twenties. But it is now driving me completely batty and I cannot keep a darn job because I am always tired and listless and have trouble concentrating. I have tried everything and am now on 900 mg of Neurontin plus 3 mg of Mirapex a day and is having no effect.
I wanted to cut back on Mirapex form 6 mg a day because it keeps me up all night and have gained 40 lbs since starting on it. As I write this email, I am stomping my right foot and must stand to type. I am in danger of losing everything I have as cannot keep a job. Have had 2 in last year and cannot function as I used to in the past.
I have a most SEVERE case of this stuff and need help
financially as well.
There are 2 answers to your dilemma.
To find out more about disability you should get a copy my book for patients on RLS (Coping with your sleepless nights). It has a section about RLS & filing for disability.
However, most RLS patients should be able to get relief with proper treatment. I see patients who are difficult RLS cases (they usually have seen 5-10 other specialists before seeing me) and I can typically make 95% of them markedly better. Unfortunately, I am on the west coast (although I do get many patients from all over the country coming to see me when they canít find a more local doctor) but you should be able to find someone closer who can treat your RLS. I would only consider the disability approach after exhausting the medical treatment by one of the real RLS experts (f which there are not too many around).
Sent: Thursday, April 08, 2010 6:38 AM
Subject: Drug holiday from Sinemet/Mirapex?
I wrote about a year ago, saying that I have been taking a combination of Sinemet 10/100 and Mirapex to control fairly severe evening and bedtime RLS symptoms. This combination has been effective, but since then it appears I have developed significant tolerance and moderate augmentation.
A year ago I was taking, I believe, 1 to 1 1/2 Sinemet 10/100 's, plus .5 to .75 mg Mirapex. Both were divided into two doses, one at 8 PM, the other 9:30 - 10 PM. Now, I am taking 3 Sinemet 10/100's plus 1.5 mg Mirapex, again divided the same way. Symptom control is still pretty good, but more frequent breakthroughs soon after lying down.
It is only noticeable when I try to take a nap after about 3 or 4 PM (otherwise symptoms do not trouble me during waking activities).
So, I'm thinking it would be wise to clean out my system and press the reset button - i.e., take a drug holiday from both of these. Then perhaps to return just to Mirapex after that. So here are my questions:
1. Is this the right approach? Should I stop both drugs for awhile, or is stopping Sinemet alone sufficient?
2. Would something like Ultram or Oxycodone be the best alternative therapy during this break?
3. How long should the break be?
4. If stopping Mirapex, do I need to titrate down to 0? Then to titrate back up when returning?
(By the way, I've tried Requip and found the side effects harder to take. And opioids have proven not to be a good long-term solution for me, for personal reasons.)
You should stop both the Sinemet (and never take it again on a daily basis) and Mirapex abruptly for about 3 -4 weeks. In that time you will likely need oxycodone (or another potent opioid, tramadol is usually not sufficient). After 3-4 weeks, you can restart the Mirapex and see if it controls your RLS.
A Reply from Peter
Sent: Friday, April 09, 2010 5:49 AM
Subject: Re: Drug holiday from Sinemet/Mirapex?
I didn't realize the reset period would need to be so long but I am willing to try your advice. I agree from my experience a few years ago with codeine (insufficient symptom control) that something as strong as oxycodone is probably going to be necessary.
Today I will be meeting with my doctor and will propose this regimen for the reset period. Given my current daily (evening) level of Sinemet (3 10/100's) and Mirapex (1.5 mg), do you have a sense for the dosage of oxycodone that will be needed to control symptoms? (My current regimen is just enough to control symptoms most of the time.)
The dose of oxycodone is variable (5-10 mg, up to 3 times daily) and depends upon your needs. I find that similar doses of methadone work even better.
Sent: Friday, April 09, 2010 2:59 AM
Subject: please help, my life is falling apart
Recently, after finally seeing a neurologist about my RLS, only to find the symptoms getting worse, I did my own research, and found this SO HELPFUL website! Thank you so much. Through the information provided, I found myself with several questions. I would appreciate your advice regarding my condition.
I have had RLS my whole life. It runs through my paternal grandmother's side of the family. She took benzodiazepines to manage her RLS. As a child, I found my feet were often hot when I got RLS, so I used ice packs. As I grew and the symptoms worsened, I used baths, massage, stretching, and even binding up my legs to control the symptoms until I fell asleep. When I got pregnant, my symptoms got so bad by my 3rd trimester (despite iron and b-12 supplements), that I couldn't sleep at all. I had to go on disability. I took Ambien, but was told to only take it every 3rd night at most, so I only slept every 3rd night, and my sleep was filled with vivid dreams. My RLS decreased only slightly after giving birth. I struggled with lack of sleep and not being able to snuggle with my newborn son due to RLS. I even ended breastfeeding early (at 9 months) because I was so anxious to start treatment.
I was started with Requip. I could never get up to the 2mg dose. It took a long time to kick in, often made me vomit within an hour of taking it, and left me groggy in the morning if I was able to keep it down and sleep deprived if I wasn't. I switched to 1mg tablets, but had the same problems, though less frequently. The side effects and ability to manage symptoms seemed to vary without cause (and I tried to isolate a cause). Also, I started noticing that I was having symptoms in the morning, a new thing for me. I was switched to carbo levodopa. At first it worked better. It was easier for my stomach to tolerate, I didn't wake up groggy, it worked faster.
But then my symptoms started to get worse. I would wake up
at 4am with horrible RLS. All the old non-drug remedies I used to use wouldn't
work. I would have to choose between chewing another pill, and stretching until
I felt like I was about to pass out, to at least getting a couple of more hours
of sleep to add to the first 2 hours, but then be SUPER groggy when I had to
wake up with my son in the morning and get him to daycare and me to work - OR -
just suffering with it and dealing with 2 hours of sleep. I figured out ways to
take long lunches and come home and take a nap after eating 1/2 a pill. I never
seemed to be able to get to sleep until 2 or 3 am. I was always tired. I could
barely function and I started to get RLS during the day, whenever I would sit
for more than an hour, less time in the afternoons.
Then I got a large kidney stone that got missed on the x-ray and didn't pass for 3 weeks. The spasms to pass it resulted in my period starting, getting super heavy, and then not stopping. I became super anemic. I had to miss work due to the bleeding and got put on probation. I had no energy to even care for my son. I got the bleeding under control, but the RLS kept getting worse. I became depressed due to my inability to function. I was put on Cymbalta, which made me dizzy and tired, and my RLS got worse. Now I was taking more carbo levodopa than ever, but waking up every 2 hours with RLS and frequently vomiting. I was referred to a neurologist that prescribed ferrous gluconate to help the anemia and time released carbo levodopa, a follow up appt. with my regular dr. two days later re-prescribed the cymbalta.
One week later and my night RLS is worse than ever and I am vomiting with diarrhea. I had to miss two days of work while already on probation for missed time and may lose my job. My last CBC showed my levels to be normal, do I have to keeping taking the iron? Isn't the cymbalta making the RLS worse? Are the dopamine meds making my RLS worse? Should I be taking a "break from meds"? If so, how do I get to sleep? Before my pregnancy I never took any prescription meds, now I'm on all sorts of stuff and it seems like things are just getting worse.
What should I do?
There are several problems with your RLS treatment. You are
correct in that the use of dopamine drugs have created most of your problems.
The Sinemet (carbidopa/levodopa) is not prescribed for RLS patients on a daily basis by RLS specialists as it almost always causes augmentation of RLS (that is what is causing your marked worsening of RLS symptoms). The treatment for this problem is to stop the Sinemet. This will cause a marked worsening of your RLS symptoms for a week or so but this can be easily treated by potent opioids (oxycodone, methadone).
The other concern is that you had problems with Requip. You did not say whether you were started on the lowest dose (.25 mg) and slowly increased to the 2 mg dose. If you started at the high dose of 2 mg, you would certainly have serious side effects such you have described. Starting at a low dose and increasing slowly (no sooner than every 5-7 days) usually prevents side effects from occurring. The nausea can also be helped by taking the medication with food. If you still have problem with Requip, Mirapex may work better (and also should be increased slowly and taken with food if you have nausea).
Cymbalta often worsens RLS. You would likely do better off this drug. If you do need an antidepressant, then Wellbutrin may be a much better choice as it does not worsen RLS as do most other antidepressants.
As far as iron therapy, we do not use the CBC or hemoglobin levels as a guide but rather the more sensitive serum ferritin level. The goal is to get the serum ferritin at least to the 50-75 level. However, this is most often very difficult to accomplish using oral iron therapy and may only improve with intravenous iron (which is currently only done experimentally for RLS).
If the dopamine drugs, Requip and Mirapex do not work for you, then anticonvulsant drugs or painkillers (opioids or tramadol) taken solely or in combination should easily take care of your RLS symptoms.
Sent: Saturday, April 10, 2010 4:24 AM
Subject: Mirapex and Insomnia
Your website answered a lot of my questions, but I thought I would try for specific clarification for my case.
I was diagnosed with RLS in 2005, when I was in my early 40s, and was given Mirapex. Once the RLS was under control, we discovered that it had been masking sleep apnea. With trial and error and a lot of patience I have found a mask that I can tolerate well, though most nights I take the mask off at some point. My sleep technician says that I am doing well, but I feel I should be wearing the mask more.
Until recently, if you had asked me "if you were marooned on a desert island and could only have one of your prescriptions" the answer would have been Mirapex. Without the Mirapex the RLS is awful. If I am particularly fatigued it will start in the evening and will make it impossible for me to sit for any period of time.
For about the past six months though, I have been experiencing varying degrees of insomnia. I would go to bed at 10 or 11, and wake up anywhere between 1 and 3 AM. I would get up, do things, and maybe eventually fall back asleep. At these times there was no indication that RLS was causing the insomnia. I tried various things, like cutting way back on caffeine, going to bed later, keeping track of what I ate, and how much exercise I was getting, but to no avail. I could be wiped out from strenuous activity and still wake up in the night.
Then, the other night, the unthinkable happened: I ran out of Mirapex. Dreading the oncoming night , I went to bed. Imagine my astonishment when the alarm went off the next morning and I realized that I was still in bed with the mask on!
I called my sleep technician and we discussed that perhaps I needed to go off the Mirapex, but that evening while I was watching television my RLS returned with a vengeance. I had picked up my prescription, so I took my Mirapex, went to bed...
...and was up at 1:30 AM.
So now what?
Although sleepiness is the more common side effect from
Mirapex, some patients such as you experience insomnia as a side effect of this
drug. You may have to consider stopping the Mirapex in order to reverse this
problem unless you want to take a sleeping pill like Ambien every night (which
is not my recommendation). It is possible that Requip (which is similar to
Mirapex) might work as well as Mirapex without the insomnia side effect but only trial and error can answer that question.
Other choices to treat your RLS include anticonvulsants (Neurontin or Lyrica which tend to promote sleep) or opioids (which could worsen your sleep apnea so you would need another sleep study to make sure that your CPAP level was sufficient to control it).
Sent: Sunday, April 11, 2010 11:15 PM
Subject: Medication question
I have RLS that is cyclical with months of suffering and then months without it. I'm just starting a new RLS period and I don't think I can put off taking medication for it any longer. I saw a doctor who is a psychiatrist. I chose him because he also has RLS. He takes Neurontin for it and he prescribed the same for me. He said that he would never take a dopamine agonist because of the side effects.
I once took Neurontin for a short while for insomnia many years ago and I hated it. I felt so groggy and apathetic. I already have really low energy and motivation so I am trying to decide whether to try the Neurontin again or to find another doctor to prescribe Requip or Mirapex. I know that the dopamine agonists may help with motivation but my doctor has gotten me quite scared of them.
What do you recommend?
Choosing the correct medication is often like choosing a
pair of shoes. You can rely on recommendations from friends or even
professionals but what works for one person (or even for many), may not be
correct for you.
Neurontin is a reasonable choice for RLS but next day sleepiness/drowsiness (such as you have already experienced) are actually reasonably common. If you want to avoid the dopamine agonists and use an anticonvulsant, Lyrica may be a better choice for you due to your past issues with Neurontin.
Although lots of problems may occur with the dopamine agonists, they still work well for a majority of RLS sufferers. If you have problems with them, you can simply change to another class of RLS medication. There should be nothing to be scared of as there are easy ways of getting off them when necessary (see the many replies about this issue on our website).
Sent: Monday, April 12, 2010 6:33 PM
Subject: RLS rebound?
Iíve been taking Requip to help alleviate RLS symptoms for about 2 Ĺ years. My dosage has been .5 mg in the morning, another .5 mg at about 5 pm and then 1 mg at about 8:30 pm which was working well until recently with very little interrupted sleep at night. The last few months Iíve begun experiencing symptoms in the late afternoons and evenings which is increasingly getting worse.
This last week Iíve also been wakened 2 different nights
with RLS symptoms. Am I having rebound effects and/or is the Requip losing its
It does not sound as if you are having rebound effects
which is typically a wearing off effect of the drug. This occurs when you take
one dose that can last only so long due to the short half-life of the drug. What
you are experiencing is likely augmentation where the drug itself may be
worsening the RLS. You could take a larger dose (say 1 mg) at 2-5 pm (instead of
the .5 mg dose at 5 pm) but this may worsen the RLS further by increasing the
augmentation problem (although the only way to figure this out would be by trial
If augmentation is the problem and gets worse with increased doses of Requip, you will have to stop this drug (see other posts on our site on how to do this) and consider the use of other RLS medication.
Sent: Wednesday, April 14, 2010 4:23 AM
Subject: Sudden low blood pressure after 3 days of Mirapex, continues after 2 days stopped
I recently tried samples of Mirapex for RLS. It seemed like a miracle cure for a condition Iíve had for at least 15 years and one of the main factors in my insomnia. The first night I took 0.375 mg at about 9 pm, then my usual regimen of 100 mg trazodone, an iron supplement, and Ĺ Vicodin (I think 5/500) at 10 before bed at midnight Ė my usual routine. That was the first night I can remember for a long time of sleeping all through the night. Same thing the second night.
But the third night, shortly after the trazodone/iron/Vicodin,
while sitting at my desk, I began to feel nauseous and dizzy. I thought Iíd need
to vomit, so tried to make it to the bathroom, but I collapsed on the way. No
puking fortunately, but I wasnít able to get up so stayed on the floor for about
10 minutes. Feeling a little better I returned to my chair, but then the
symptoms came on again. I staggered to the bed and crashed. A little later Ė
perhaps 15 minutes Ė I checked my blood pressure and found it way low Ė
something like 85/53. For someone who normally has high BP that was even more
scary, but at least I knew what the lightheadness was caused by. I slept through
the night with no RLS. BP was OK in the morning.
In the morning I checked with the doctor, and was told, no surprise, to quit the Mirapex.
Now, the odd part. The next night I took the trazodone/iron/Vicodin as usual, but no Mirapex. The low blood pressure episode happened again, but not as severely. I wondered if there was still some Mirapex in my body. I still slept through the night. And then last night, same medications, same low blood pressure (less severe again). But this time I had RLS and have not slept much. I donít know how much of the RLS was caused by the change of drug, or how much is because of some back pain today, but either way the sudden blood pressure drop is still odd.
Given the half-life of Mirapex, Iím now thinking that the
other drugs were the issue. But it is still odd. Iíve been taking Trazodone
consistently for over a year, but increased the dose to 100 mg about 4 weeks
ago. Iíve been taking iron at night for a couple of years. I used to only take
Vicodin occasionally for the pain and narcotic effect after an RLS night was in
process, but when one of my doctors told me that it used to be prescribed for
RLS I started taking it regularly. I guess I need to experiment, but maybe I can
go back on Mirapex or try Requip.
Of all the drugs that you are taking, only Mirapex has been known to cause low blood pressure. Mirapex typically has a half-life of 8-12 hours so it is possible that some drug was left in your system the night after stopping it. However, the Mirapex alone may not have been responsible and other conditions (such as being somewhat dehydrated) may have contributed to your low blood pressure. Given that you have been on the medication for a while, it is hard to put the blame solely on Mirapex.
Sent: Thursday, April 15, 2010 4:28 AM
Subject: RLS enquiry
I am suffering from RLS and peripheral neuropathy for the past one and a half year. I will be starting Neurontin for RLS and neuropathy very soon. But I am concerned about the side effects of Neurontin. I am already suffering from arrhythmia and an slightly elevated heart rate of around 85. I get chest pains with exercise and I am generally intolerant to exercise.
I have got a few questions regarding Neurontin. Is there any way you can delay developing tolerance to Neurontin. Can I continue to use Neurontin for neuropathic pain even when it has stopped working for RLS. For how long Neurontin is effective for RLS. Can I use it even though I have got a little chest pain which I believe is due to neuropathy.
Neurontin should not affect your heart problems or exercise
difficulties. The main side effect is sleepiness, drowsiness or dizziness (due
to the sedating effects of this drug).
Tolerance does not occur and it should work for neuropathy or RLS equally well whether it is used primarily for one or another condition.
Sent: Saturday, April 17, 2010 9:44 PM
Subject: Help from Exerciser 2000 Elite?
Has anyone reported help for RLS symptoms from using the Exerciser 2000 Elite machine?
Mild to moderate exercise has been shown to benefit RLS symptoms. However, no particular type of exercise or equipment has been examined or demonstrated to be more helpful.
Sent: Monday, April 19, 2010 9:44 PM
Subject: RLS possible rebound
I've been on Requip for several years, I've had to wean to small doses during pregnancy's and was unable to breastfeed. anyway I'm having to take 2mg a night now. Usually was only taking 1 or 1.5 depending on caffeine and sugar intake. My symptoms are worse and I am getting them in the AM. Do I need more, a change, something added??
You should not use Requip during pregnancy, even at low
doses as it is a Category C drug. This category of drugs is not recommended for
use in pregnant patients and there are alternatives that work well and are less
risky to the fetus.
Dopamine drugs like Requip are known to stop the flow of breast milk so it is no surprise that you had problems breastfeeding while on the drug.
It sounds like you are experiencing augmentation of RLS (rebound is a different issue). It would be best to stop the drug (you will require a week or so of potent opioids for the temporary worsening of RLS when stopping a dopamine drug) and change to another class of RLS drug.
A Reply from Laura
Sent: Tuesday, April 20, 2010 6:41 PM
Subject: RE: RLS possible rebound
Yes, I know it is a class C, but no doctors in my area had any alternatives. Both my girls are super healthy, it was risk I had to take to keep my sanity. I got severe stress headaches and the sleepers didn't help. My OB was ok w/ small doses after the first trimester. I may get your book for my family doctor. It took me months to even get the Requip when it came out.
I did go to Eugene (in OR) Sleep Disorders center and saw a doctor who didn't have anything to add except take small doses during the day as needed. Pretty disappointing. I wish I had some better resources in my area. If you have any ideas let me know.
Even small doses of Requip pose a significant fetal risk (even though the risk is obviously numerically very small, the results can be devastating) when taken during pregnancy and should be avoided. Unfortunately, most doctors (even the supposed specialists) know little about the more intricate aspects of treating RLS.
Sent: Saturday, April 24, 2010 6:12 AM
Subject: Treating arousals and PLM?
I have had 2 sleep studies and one MSLT. Both studies ruled out OSA, but showed some mild leg movement and a high arousal index of 60 per hour. The MSLT showed an average sleep onset of 8 minutes, but no REM sleep, which may have been suppressed by me being on Zoloft. They tried Requip and Mirapex, but I couldn't tolerate either of them.
Now I am on Provigil, but am still getting sleepy. I recently had my ferritin tested which came back at 32. I don't see my sleep doc for another month, but my family doc told me to start taking 25 mg of iron per day. Is this ferritin level low enough to be causing some of the leg movement? Is the dosage enough to raise my ferritin level? What could be causing the high rate of arousals?
The treatment of PLMS (leg kicks) is quite controversial
(that is whether or not it even needs to be treated). However, since you state
that you had only a few leg movements (and Zoloft can cause a lot of leg
movements), then that sounds like your leg kicks should not be treated (although
I would like to see the exact number of leg kicks or PLM per hour and the amount
of PLM with arousals/hour, it is extremely doubtful that any RLS/sleep
specialist who understands these issues would treat you).
A ferritin above 20 is considered normal. For RLS patients, we have a higher goal of 50-75 but that only applies to RLS patients so you have no reason to take iron therapy.
As to why you have so many arousals, that may be very difficult to discern but it does not sound like RLS or PLMS have anything to do with that problem.
A Reply from Jodi
Sent: Saturday, April 24, 2010 7:15 PM
Subject: Re: Treating arousals and PLM?
During my study, I slept 7.5 hours, had 241 total leg movements, 16 episodes of PLM, and 79 EEG arousals associated with PLMs of sleep. If this doesn't indicate RLS or PLMS, I'm not sure why they had me try Requip and Mirapex.
Leg movements are generally considered PLM so I am not sure why you have a separation of total leg movements and PLM. The important number however, is PLM with arousals per hour. So far I have no idea why any doctor would give you Requip or Mirapex.
Sent: Sunday, April 25, 2010 11:57 AM
Subject: RLS and allergies
I have RLS and take Requip at night to sleep. I have recently moved and have had very bad allergy reactions to the trees and flowers in the area. I know that most over the counter allergy medicines aggravate RLS. Is there any remedy that I can use for the spring?
The non-drowsy antihistamines like Claritin (and possibly
Zyrtec) are fine as are the prescription drugs Allegra, Clarinex and Xyzal.
Additionally, nasal steroids (like Nasonex, Nasacort, Rhinocort, Flonase, etc.)
work very well and have no risk of worsening RLS.
You should check out (on our website) and download our free medical alert card which contain much of this information and give a copy to your doctor.
Sent: Sunday, April 25, 2010 6:01 PM
Subject: Mirapex compared to Requip?
I have been on Requip for a couple of years now at 2.0 mg
with 50 mg Lyrica with marginal results. Do you find better results with
I take Zoloft, and Strattera for anxiety and depression also. I have co morbid Fibromyalgia which runs in my family, I remember symptoms
of the RLS since I was a kid.
40 year old male
Some patients do better with either Mirapex or Requip while
others find them about the same. The only way to know is to try it and see.
Lyrica (which helps RLS and fibromyalgia) may work better at a higher dose.
Increasing to up to 300 mg (slowly) may provide more relief with either Requip
Zoloft tends to worsen RLS and that could be a big part of your problem.
Sent: Apr 26, 2010 03:26:03 PM
Subject: trying to get rid of Sifrol/ropinirole
I asked earlier in 2 emails how to get rid of Sifrol / ropinirole and you suggested opioids. Then I purchased your book and read your book in great detail. It amazed me how much is known (in your book) and how little is known by doctors and neurologists (I speak of the Netherlands now where I live). The refuse these medicine or send you away with it without proper guidance.
Well, as written earlier the side effects of Sifrol / ropinirole were dramatic. I could not get opioids, so I asked my doctor Lyrica (3x 75 mg). In 2 monthsí time went down from 5 tablets Sifrol to 3. Then I took in addition Rivotril 3x 0.5 mg and went down further with Sifrol bit by bit. Every week a quarter of a tablet. I gradually improved. No constipation, hardly any arthralgia and neuropathy. So I feel relieved. |However, in the meantime I visited another neurologist and she said that the combination of Lyrica and Rivotril is dangerous (apnea etc). What do you think?
And would it be dangerous to increase the dosage of Lyrica if needed? Another consequence of taking medicine is that I sleep now 4-5 hours instead of 8 to 9. Is that normal? I am not unhappy with that since I do not feel tired during the day.
There is no problem with taking Rivotril (clonazepam, called Klonopin here in the USA) and Lyrica together. The problem is with taking clonazepam at all. This is a drug that is widely prescribed but most physicians do not realize that it has a 40 hour half-life (which means that more than 1/2 of the drug is left in your body when you take the next dose one day later). Although you do not complain of daytime sleepiness due to accumulation of this drug, that is a typical side effect (often not noticed or appreciated by the patient).
Furthermore, tolerance and dependence occurs frequently
with clonazepam. If you RLS is treated properly, you should not need this drug
as it is simply used as a sleeping pill (and there are much better and safer
sleeping pills available if needed). I never prescribe this drug as it is best
left for psychiatric use (for patients with severe anxiety problems).
You do not state whether you are taking the Lyrica three times a day or 3 tablets once daily. However, the maximum dose for Lyrica when used for RLS is 300 mg (typically used once daily in the evening).
A Reply from Bart
Sent: Sunday 27, April 2010 5:26
Subject: Re: trying to get rid of Sifrol/ropinirole
Could it then be the effect of Sifrol? In fact it started
when taking Sifrol for the first time.
I had only RLS during the night at the start of sleeping or when relaxing in the evening. With Sifrol the daytime RLS started. Also, what about my problem with decreased hours of sleeping?
The decrease in your sleeping hours is quite mysterious as
both Lyrica and clonazepam both increase sleep time (typically). Even if sleep
is more efficient, it would be unlikely that you have less sleep time.
If you have daytime RLS symptoms that need treatment, then taking Lyrica three times daily would make sense and I would not make the suggested change (you might want to increase one of the later doses to 150 mg if needed). However, if your RLS is most evening/nighttime, then you should only take one dose of Lyrica about 2 hours before symptoms typically occur. You should then try 150 mg for a week or 2, then you can increase to 225 mg (3 of the 75 mg tablets) for a weeks and you could go as high as 300 mg if needed after that.
Sent: Tuesday, April 27, 2010 6:09 PM
Subject: RLS worse on Mirapex?
I've had RLS since I was in my twenties and until I was in my forties a aspirin would help relieve it. In my forties I was put on Klonopin which has helped but I still have had many restless nights up walking the floor or trying to play games on the computer. Lately it's gotten much worse and I felt like I was going crazy my doctor put me on .125 mg of Mirapex.
For four weeks I felt normal for the first time in years. However, now the RLS is back just as bad or worse and I also have a picking feeling in my arms and legs at times. I'm also on Zoloft which I've asked my doctor to change and put me on something else because I've heard Zoloft can make RLS worse but I can't seem to convince him its worth a try.
I take so much medication for my heart and my stomach that I worry about how it all affects my RLS. I'm at a point that I would rather go off all my heart pills if I could just get my legs under control.
It sounds like you are getting augmentation (worsening of
your RLS from taking a dopamine drug) from the Mirapex. If you increase the dose
of Mirapex (which is likely what your doctor will want to do), you will get some
relief for a while then your RLS will worsen again. You need to get off Mirapex
(and your will need potent opioids for a week or 2) then start on other RLS
medication (such as anticonvulsants or painkillers).
Zoloft may be worsening your RLS. The only antidepressant that does not worsen RLS is Wellbutrin.
Sent: Wednesday, April 28, 2010 7:46 PM
Subject: RLS and Mirapex dose?
I have had RLS for years and am 83 years old. Currently, I am on Mirapex. I do not sleep well and would like to know if that can cause RLS to be worse.
How much Mirapex can I take? I took Requip and it made me sick. I am in a small town where there is not much information on RLS. Are there any new drugs to take for RLS?
Most RLS patients do well on Mirapex at .25 mg. A few need
to go to .5 mg and very few get benefit from .75 mg or higher. However, at your
age, it would be prudent to stay on the lower doses as the risk of side effects
increases considerably with the higher doses.
Not sleeping well may indirectly worsen RLS as symptoms do increase when patients are fatigued.
You may want to consider trying anticonvulsant medications (Lyrica, Neurontin) or low potency painkillers (tramadol, hydrocodone).
Sent: Thursday, April 29, 2010 3:30 PM
Subject: Kickin and screamin
I have been suffering with RLS for 20 years. I am 50 years old and have been from one doctor to another mainly because my job has required me to move several times. My RLS is EXTREME!! It is in my legs, hips, arms and shoulders. Doctors have tried me on Restoril, Xanax, Valium, Klonopin, Ambien and Lunesta. The Ambien and Lunesta made me very sleepy but didn't shut down the RLS; I call these the "drugs from hell" those nights were sheer terror. One night that I did get to sleep, my wife was afraid to stay in the room with me. The other drugs simply didn't work.
I have also been on Mirapex and Requip. The Requip at 2mg causes horrible nausea and stops up my sinuses for about 2 hours after taking it. I experience extreme sleepiness, but still cannot quite fall asleep.
At one time about 3 years ago I was seeing at pain management Dr who had me on 4 mg Requip at night along with Phenergan for the nausea, 1600 mg of gabapentin, and 30 mg of Lortab each day and I was still getting little relief. As I said, I'm a poster child for RLS. Doctors have also tried me on Depakene, Mysoline and Topamax. This group of drugs didn't seem to work.
About 3 years ago while teaching in a college in Mumbai, India, a fellow professor and Medical Doctor and I roomed together and I was able to pick his brain for 2 weeks. He prescribed methadone at 10 mg per day. I am now off all other medications, have no RLS symptoms, have experienced no need to increase dosage, and have even found that I can skip dosages about every 3 days. Sadly, the doctor that has given me this prescription lives in another state and I am having more and more problems getting pharmacies to fill the out of state prescriptions.
Do you know where can I get solid medical studies on the effectiveness of low dose Methadone for extreme RLS?
I am quite desperate even thinking about not having the medication. I took a holiday from the methadone for about a month and the RLS was a living hell again. With my age, 2 heart stints, and diabetes, I just can't handle sleep deprivation and not being able to sit or lay down for more than about 15 minutes at a time. Any help would be greatly appreciated.
Your treatment with methadone given your medical history is actually quite reasonable. As most doctors (and even most neurologists and sleep specialists who typically are the experts who treat RLS) are not familiar with the use of opioids (never mind potent and less commonly used ones like methadone) for RLS, it is often very difficult to find a physician to prescribe this medication to treat your RLS.
It may be helpful to get a copy of my book for doctors that you can share with your doctor as it has the information on how to use methadone for RLS and the medical references.
Sent: Saturday, May 01, 2010 5:51 PM
Subject: Poor sleep
I have RLS 24/7. I use ropinirole and tramadol which provide reasonable relief and also for the last year take zopiclone when going to bed. After approximately one to two hours I am again wide awake (usually no RLS symptoms but no sleep either), get up for 2 or 3 hours, and go back to bed at around 5am and hopefully get another couple of hours sleep.
On occasion on going back to bed at 5am I have on occasion taken a zolpidem which are from a previous script. My doctor is reluctant to prescribe anything stronger or more likely to become addictive than zopiclone and my zolpidem will not last much longer.
This has been going on for 3 or 4 years and I get so tired during the day. A busy lifestyle does not allow for napping during the day. I am getting approx 4 hours broken sleep each night. Can you help me improve on this?
It could be that the ropinirole is causing some insomnia
although it tends to cause more sleep onset insomnia rather than sleep
maintenance insomnia. The only way to figure this out would be to discontinue
the drug (which might dramatically worsen your RLS for a week or so in which
case you wonít sleep and this wonít be a good test) and see what happens. You
could use an increased dose of tramadol to control your RLS during this
experiment (but check with your doctor before attempting any changes).
You might also try a potent opioid for a week in lieu of using ropinirole to see if the insomnia goes away (and thus was related to the ropinirole).
Sent: Friday, May 07, 2010 5:54 PM
I have had PLMD for eight years; have been on Mirapex .50 for last two years. I developed impulse control disorder (eating/shopping/computer use) and asked to go off of it. My sleep specialist told me to stop it cold turkey and gave me 30mg of temazepam. I am having severe withdrawal...anxiety/panic/depression/crying jags/lethargy.
My doctor seems to think I can just 'tough it out" but it's
been two weeks and I'm still not functioning .Could you give me your thoughts?
It is hard to comment fully without seeing your sleep study
and knowing more about your problem. However, typically, the dopamine withdrawal
problems (worsening of RLS or PLMS) should only last 1-2 weeks. If you are doing
poorly now, it may be due to the PLMS being not adequately treated. Temazepam
does not decrease PLMS but rather prevent arousals (changes from deep
restorative sleep to light non-restorative sleep).
It may be helpful to try an anticonvulsant like Neurontin or Lyrica.
A Reply from Bonnie's husband
Sent: Sunday, May 09, 2010 2:44 PM
Subject: HELP - Dopamine Agonist Withdrawal Syndrome
My wife has had fibromyalgia for over 20 years ; was diagnosed with PLMD about eight years ago.. When she gets good sleep, her fibro symptoms are reduced significantly She has been on 1mg Klonopin and . 50 Mirapex and had good success until recently. She developed several impulsive behaviors; eating, computer, shopping etc and says she felt 'edgy' all of the time.
She tried Sinemet (didn't work) and Requip (made her suicidal). Her sleep specialist has said her body doesn't handle "dopamine agonists' well. He took her off of all dopamine agonists and changed her Klonopin to temazepam (sp). She has been a mess since this happened. Did 'Google' and read about Dopamine Agonist Withdrawal Syndrome; she has anxiety, panic, tinnitus, nausea, pain etc.
Her sleep doctor saw the information (New York Presbyterian Hospital study Jan 11 ,2010 archives of neurology ) We faxed the info to him but he repeated that the temazepam should alleviate her symptoms. (It doesn't) She has been off of both Klonopin/Mirapex for almost two weeks.
The article says the benzodiazepines, and antidepressants do not help. Any ideas on where do we go next? She is anxious, panicky and in tears almost every day. Do you think that marijuana would help ?
Bob (Bonnie's husband)
The DAWS (Dopamine Agonist Withdrawal Syndrome) is not very
understood and so far has only been documented in the medical literature in
Parkinson's disease (PD) patients (which is not to say that it does occur in RLS
or PLMD patients treated with dopamine agonists and I may have heard of a few
cases already). It has only been recognized in the past few years and just in a
very small percentage of PD patients which is why it is poorly defined and why
most neurologists are not very aware of the disorder and what to do with it.
You are correct in that benzodiazepines (and even antidepressants) do not help DAWS. Reinstituting the dopamine agonist does help the problem (it is usually started at lower doses which may resolve the impulse control problems that typically occur in the PD patients who develop DAWS) but this does pose the risk of restarting your wife's impulse control issues especially as low doses are already being used for RLS and PLMD.
There is absolutely no information about whether marijuana can help DAWS although it does help RLS (but we have no idea if it helps PLMD).
I wish I could give you more complete and better information on what to do but it really does not exist.
Sent: Tuesday, May 11, 2010 8:39 AM
Subject: Rotigotine/Neupro patch?
The Neupro patch has been introduced in Europe and I would like to know if it is advisable for someone who has no daytime symptoms but RLS from 6 pm onwards and didn't do too well on the dopamine agonists (needed more and more of them and augmentation was an issue too)?
Although it would seem that Neupro should only be taken by
RLS sufferers with all day RLS (or even better, with full 24/7 symptoms), it
actually works well for those with RLS symptoms occurring less frequently.
Patients who cannot tolerate oral dopamine agonists (often due to high peak
level of the drug when taken orally) may do very well with the lower and steady
drug levels released from the patch.
There will be more exposure to rotigotine than necessary by wearing the patch around the clock but that may not really result in any noticeable problems. You could try to wear the patch less than 24 hours (like starting 3-4 hours before your symptoms since it takes about that long for the drug to onset after a patch is applied) but the drug will then not reach a level steady state which takes about 3 days of wearing the Neupro patch continuously (and thus it may not work as well).
Augmentation seems to be almost a non-issue with Neupro so far but we do need more experience to be sure about this aspect.
Sent: Tuesday, May 11, 2010 8:49 AM
Subject: Still searching for relief.
I would like to thank you for tirelessly researching and educating people and academia on the treatment of this disorder. You have helped countless people, including myself.
I have 24/7 RLS. I gone through 6 DAís, and I canít use them anymore. I have tried the anticonvulsants without success. The only option for me is opiates. My doctor (Physicians Assistant) has the job of treating my RLS, along with some chronic pain issues. I am currently allotted 3) 5mg of Methadone for the day, taken 8 hours apart. The methadone gives me a headache, and the dosage is not sufficient for either the pain or the RLS. However, if I were to take 10 mg in the early evening, and 5 mg before bedtime, that seems to quell the symptoms of the RLS enough for me to get some sleep. I also have severe PLM as verified in 1996. At that time, I had 34 arousals per hour before 3 am.
I canít seem to get the PA to understand that the pain and the RLS are 2 distinct and different entities. I was previously taking OxyContin which at around 30 mg was effective for the RLS but not effective for the pain, twice daily. I had to leave my state for a few months, and checked myself into a drug rehab in order to get a chemical detox, as I couldnít get a doctor to continue my treatment. I am not addicted to the substance just dependant. I was able to return and revisit the PA and was offered only the Methadone, and only at the current dosage.
I know you advocate Methadone, and although the headaches
are finally subsiding after a few months, it hasnít been effective at the
current dose. What dosage do you find is effective for difficult RLS/PLM
patients? My relationship with my provider is becoming strained. I havenít found
relief for many months, so my quality of life is nil.
The dose of methadone that I use for difficult RLS cases such as yours is up to 10 mg three times daily (rarely do I use a higher dose). I have found this dose to be very effective and safe when the patient is monitored closely.
A PA is a reasonable caregiver for many general medical problems but is clearly out or their league (as are most medical doctors with many more years of training than PAís) for difficult RLS cases. You likely are covered by HMO insurance (if not, you can change providers without any concerns) which often puts up roadblocks for getting specialist consultations. Unless you can convince your PA to treat you according to the above guidelines, you should demand a referral to a specialist (neurologist, sleep specialist), although even many of them may not be fully knowledgeable about treating severe RLS with opioids like methadone.
Sent: Thursday, May 13, 2010 8:19 AM
RLS runs in my family. Back in the day, my older sister called it "squiggles". I had PLMD (according to my wife) when I was young, but now it's RLS. Fortunately, it's not too bad yet, but it gets a little worse every year. I'm 57, thin and exercise regularly. As a point of interest, I often wake up in the middle of the night with "squiggles" and I'm also hungry. Even without the RLS, there is no way I can get back to sleep if I'm hungry. So, I get up for 20 minutes, eat a yogurt and a cookie and go back to bed. I'm not as sharp as I used to be, but I wouldn't say I'm sleep deprived. I get my best sleep from about 5-7:30am.
I started out on Sinemet 25-100, but experienced augmentation. I still take a half pill occasionally in the middle of the night. How many times a week can I do that and avoid augmentation? Then I took Requip 0.25mg. Eventually, I tried 0.5mg, but that caused ED. Now I'm on Tylenol/Codeine #3, which I take at bedtime (10:30 ish). Recently, I've been waking up earlier (a little before 2am) with RLS and definitely need a second dose of something.
Should I take another Tylenol/Codeine #3 (cheapest) or Requip 0.25mg or something else? I also have a prescription for Ambien, which works for a few hours, too. I've never tried Mirapex. Is it better to use a combination of drugs?
There is not much data available to determine the minimum
dose of Sinemet that one can take and still avoid augmentation. My best guess
would be that augmentation would be extremely unlikely to occur when it is taken
up to 3-5 times per week. However, if you are also taking another dopamine drug
such as Mirapex or Requip, this might happen with less Sinemet (although that is
also totally speculative as we do not have any data and I donít have much
experience using as needed Sinemet with a dopamine agonist on board).
Although codeine is a reasonable RLS drug, it does not last very long. Hence, your need for more medication in the middle of the night. I would recommend a longer acting opioid (such as methadone which works much better and does not contain Tylenol which does not help RLS so brings risk without any benefits) which should last through the night.
Mirapex does have a longer half-life than Requip (8-12 hours compared to 6 hours) which may provide more prolonged relief during the night but the only way to tell if it is right for you is to try it.
Combination therapy is only necessary when one drug cannot treat all your symptoms adequately (either limited by its effect or by side effects). If the above therapy does not help (which it should), you may consider the anticonvulsants.
Sent: Thursday, May 13, 2010 5:28 PM
A little while back I sent you a message in which I told you that my RLS doctor (who has it himself) is very opposed to prescribing dopamine agonists because of the side effects. At my last appointment I asked him to clarify that. He said that he's worried about the long-term effects - particularly movement disorders like TD. I thought that was only an issue for the dopamine antagonists? Do you have any concerns about that?
Also, do we know much about dopamine reuptake inhibitors? I
know that they are very limited in our current approved arsenal of medications
but do you think that they will have this same risk and do you think that they
may be an important future treatment for RLS?
In addition, I recently came across the following article by accident. It's about a cholinesterase inhibitor that supposedly was successful in treating RLS. Do you know anything about this or do you think that there may be a future for this type of drug for RLS? I am hoping this proves to be the case because it would help aging baby boomers like myself with more than one problem at the same time.
Although there may be other long term effects from using
dopamine drugs for treating RLS, tardive dyskinesia (TD) is not one of them.
That problem only occurs with the use of dopamine drugs for Parkinsonís disease
patients. So far, drugs that are dopamine reuptake inhibitors have only weak
clinical effects for helping to relieve RLS symptoms.
The cholinesterase inhibitor case report is simply one case which amounts to very little evidence for its benefit. This was reported by anesthesiologists who are clearly not experts in RLS (they gave the patient IV Benadryl (diphenhydramine) which typically drives RLS symptoms crazy). From what we know about RLS, it is very unlikely that this class of medication taken orally or intravenously will pan out to be helpful for RLS.
Sent: Saturday, May 15, 2010 10:33 AM
Subject: Iron therapy buggered by Coumadin
Your iron therapy recommendations totally eliminated my RLS for the last 5 years. Thank you!!
Then in January I came down with AFIB (atrial fibrillation) and was put on Coumadin, metoprolol and Lisinopril by my Cardiologist. About a week later my RLS returned with a vengeance and my blood tests indicated about a 40% change in all my iron profiles (ferritin and TIBC up, iron and % iron saturation down).
When I mentioned all this to the cardiologist he just smiled at me and shrugged. My GP said she had no idea what was going on. I don't want to go off the heart meds and my ferritin levels (704) are now quite above the normal recommended levels so more iron supplementation is probably not good either.
Do you have any recommendations? I also have Hepatitis C from a contaminated blood transfusion 33 years ago so I understand that one of the FDA approved RLS drugs should not be taken but I can't remember which one.
Can you shed any light on what may be happening with my new situation and do you have any recommendations?
None of your new medications nor the atrial fibrillation
should alter the iron levels or worsen RLS. Typically, ferritin levels drop
before iron levels and % iron saturation drop so that is very curious (the
ferritin level can go up independently with infection or other body stresses but
otherwise should parallel the iron levels but in a more sensitive fashion).
Ferritin levels above 50-75 are typically more than adequate for RLS patients (I suspect your level of 704 is a typo as levels above 200 may be dangerous) so you should be fine. I would recommend repeating these tests.
If your liver function (as measured by liver enzyme tests) is reasonable then either of the 2 FDA approved drugs (Mirapex and Requip) should be fine. As Requip is metabolized in the liver, patients with liver failure (with very poor liver function) might have to be careful with dosing this drug.
A Reply from Gina
Sent: Saturday, May 15, 2010 3:34 PM
Subject: RE: Iron therapy buggered by Coumadin
No, unfortunately the ferritin value of 704 value was NOT a typo. I was on OTC iron supplements for about 2 years and RLS had completely disappeared however when ferritin levels were first tested in late 2006 the level was 1205 and total iron was 180. I stopped the supplements right away and the doctors were not too concerned as all other blood parameters were o.k. and I was feeling great. Ferritin levels slowly but steadily dropped over the last few years to 533 and 131 for iron as measured in January of this year. Again all other blood parameters were fine including liver enzymes and I still felt great.
Then AFIB came and as previously stated RLS returned and ferritin jumped up to 704 almost overnight and my iron level dropped to 82.
Maybe I'm naive but I thought that ferritin was the way that the blood stored excess iron in a non toxic form - so why are high levels considered dangerous?
Right now I'm pretty confused but physically feel pretty good except for my night time RLS which really impacts my quality of sleep. If you think I'm a candidate for Mirapex, I'll bone up on it and then talk to my doctor about a prescription
Ferritin is a protein that carries and stores iron (you are
correct, in a non-toxic form) in the body. However, when iron levels are high,
only so much iron can be stored by ferritin and much of the iron gets released
into the bodyís organs (like liver, pancreas, etc.) where it can cause damage
(diabetes, liver cirrhosis, etc.). Typically this becomes a concern when serum
ferritin are above the 200-300 range and is called hemochromatosis (it is called
acquired hemochromatosis if it occurs due to taking in extra iron).
It is usually very difficult to raise one iron/ferritin to very high levels by taking oral iron (that is why we consider using IV iron for our RLS patients). However, some patients clearly do have the ability to raise their serum ferritin levels to very high levels even with oral iron and in these patients the condition of primary hemochromatosis should be considered. As this is a very serious condition (which can cause organ damage as noted above), it should be investigated fully and ruled out.
Mirapex (and even Requip as your liver function is normal) would be reasonable to treat your RLS.
Sent: Sunday, May 16, 2010 5:28 AM
Subject: Mirapex CR vs. ropinirole (1mg)
I have taking 1 mg Mirapex for years now. Overall I would say the results have been satisfactory, although there have definitely been times when it seemed less effective in controlling my restless legs symptoms than I would have liked.
Because of this my doctor subscribed I mg ropinirole (Requip) to see if I would have better success with it. I have been taking this medication for a week now. Not only has it NOT improved my RLS symptoms, but they have been getting worse each day!. Last night was a particularly rough night - after only getting a few hours sleep I am ready to switch back to to Mirapex!
Is there some difference in the ingredients of these two medicines that might account for the very different responses I have had to them? Or any other explanation for my unusual reactions? (I am a 60 yr old white female of average weight).
I would appreciate any thoughts you might have about this. Have there been any other reports of similar reactions? I do take other medications, but these have not changed in several years, so this doesn't seem a likely explanation.
The problem that you have experienced is quite predictable.
Mirapex is about 2-4 times more potent (compared on a mg basis) than Requip.
Therefore, you got only 1/2 to 1/4 the dose of Requip necessary to treat your
RLS. You would need 2-4 mg of Requip to equal 1 mg of Mirapex.
In addition, since your dose of Mirapex is already quite high, changing to another dopamine agonist is unlikely to be successful. A better choice would be to add a dose of an anticonvulsant (Lyrica, Neurontin) or a painkiller (tramadol, opioids).
You are also taking the CR version of Mirapex which is a slow release 24 hour medication. To match that you would need to take the Requip (total of 2-4 mg/day) spread out every 8 hours. If you only have evening RLS, Mirapex CR is not the correct choice as it would only be appropriate for those who suffer with RLS symptoms around the clock.
Sent: Tuesday, May 18, 2010 2:44 PM
Subject: RLS and Requip?
My doctor told me to take glass of tonic water and my Requip before bed time for my RLS is this safe?
It is safe but the tonic water adds absolutely nothing for your RLS. Just take the Requip with plain water but take it 2-3 hours before bedtime as it can take 1-3 hours to kick in.
Sent: Wednesday, May 19, 2010 5:48 PM
Subject: RLS worsened with steroids?
I was diagnosed with RLS about 1 year ago but have had problems since 2006. I was in a car accident and had 3 bulging discs in my neck. The doctors in steroid injections in my spine and radiofrequency in my neck as well. It was during this time I started feeling funny in my legs as well as chest, back and arms. I felt like if someone could pull on my arms I might get some relief.
I told the doctor that was doing my neck procedures and
he looked at me like I was crazy. I did not talk about it again until my husband
asked me to discuss this with our family doctor. I felt such a relief that I was
not crazy. Could any of these procedures caused or triggered this problem? I
know my grandmother and aunt have had RLS as well.
Steroids do not worsen RLS so it is hard to understand what may have caused your RLS to worsen. If you were given additional medications around that time, it is possible that one of them worsens RLS (and that may be the origin of your increased symptoms). Otherwise, it may be difficult to figure out what caused this exacerbation of your RLS.
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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