If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Monday, October 02, 2000 8:13 PM
Subject: RLS and antidepressants
What a wonderful site! I have learned more tonight than in the past many, many years about RLS. I have suffered from this my whole life. I am now 50 years old. I have been taking Mirapex for 2 years, and it usually works. Lately I have been under considerable stress due to a vision problem, and I am not sleeping.
Ten years ago I was diagnosed with panic disorder and have taken one or another antidepressant ever since. They all have such awful side affects, and now I'm reading that they can aggravate RLS!!!! Yikes!!! I'm also wondering if I really have panic disorder?? If maybe my symptoms were actually related to RLS.
I get the same type of feeling in my chest, like a wrenching feeling, similar to the feeling you get when you dream you are falling and wake up with a start. I have this over and over as I'm trying to go to sleep. Has anyone else experienced this? Overtime I went to my doctor with complaints of it moving to my arms, he would increase my dosage of anti-depressant. I have gained 100 pounds over the last 10 years and I'm really hoping I can discontinue the use of anti-depressants. I'm trying yet another doctor next week. I hope she can direct me.
RLS is the arms is quite common in the more severe RLS patients, especially with longer duration disease. As antidepressant medication can worsen RLS, it is quite likely that your doctor's efforts were doing more harm than good.
RLS can also happen in the chest muscles (or almost any other muscles in the body), so it is possible that the feeling in your chest could be from RLS. It is however, difficult to assess your chest symptoms and they could be due to other causes.
It may be of benefit to taper off your antidepressants (under the supervision of your doctor) and perhaps increase your RLS medication to see if you improve.
Sent: Tuesday, October 03, 2000 7:17 AM
Subject: My RLS experience
I've had "Achy Knees" off and on ever since I can remember. For me, the sensation is one of dull to sharp pains localized around my kneecaps with an uncontrollable urge to move my legs in some way. If I try to force myself to hold still, the feeling is unbearable.
When I was very young (8 or 9) my family thought they were growing pains and my father would rub Ben-Gay on my knees when it occurred at night. For some reason, as a child sometimes I would go sleep on the bathroom floor and the cool, firm tile seemed to help. School was a torture: being forced to sit still for hours at a time with my knees going crazy. Field trips to see the Nutcracker, assemblies, lectures, were all absolute hell if my knees were acting up.
By the time I was in college it was clear that these weren't growing pains. Adulthood also brought with it the freedom to just get up during a class lecture. Many times I just moved to the back of the room and paced while I took notes. Plane rides and long car trips have just about sent me over the edge on numerous occasions. My partners have had to get used to me routinely leaving the bed/bedroom in the middle of the night because I needed to pace around.
I've noticed through the years that several factors seem to exacerbate the symptoms. If I am exhausted (mentally or physically), if my legs have gotten chilled or are uncovered, or if the weather is damp, I'm far more likely to suffer an attack than usual. A combination of these factors makes it even worse. I've also noticed that it comes and goes. Sometimes I'll get a window of several months when I don't have a single attack, and other times (such as now, during my first pregnancy) it's an almost nightly occurrence.
I'm relieved to have found out that I'm not alone.
E. from Northern California
Pregnancy, especially the last trimester, tends to make RLS much worse (as I am sure you already know). There are medications that will help even for pregnant RLS sufferers. When you are over your pregnancy, you should consider Mirapex or Requip.
Sent: Wednesday, October 04, 2000 1:06 PM
Subject: Do I have RLS?
I'm not certain if I have RLS, and would appreciate more information before I talk to my doctor. Here are my symptoms:
(1) Jittery legs (creepy crawly) in the evening (which worsens if I drink any caffeine at all)
(2) I'm ALWAYS tired in the morning....regardless of how many hours I apparently sleep. My husband complains of me kicking in my sleep, everyday!
(3) My father jerks so violently in his sleep (he is 77) he actually falls out of bed.
No other health issues, except allergy to dust and congested sinuses. What do you think? Do definitive tests exist to diagnose RLS? What are potential treatments?
It sounds like you definitely have PLMD (the nighttime leg jerking problem) which is present in 85% of RLS patients. The leg jerks can cause poor sleep quality and result in daytime fatigue and sleepiness.
If you get creepy crawly feeling in your legs at rest, especially in the evening, and if you have an almost irresistible urge to move your legs when you get the creepy crawlies and movement helps relieve the leg feelings then you have RLS. There is no other test needed for diagnosing RLS.
To see whether or not your PLMD is causing enough problems to deserve treatment, you will need a sleep study. There is not other way to diagnose significant PLMD arousals.
There are lots of treatments for both RLS and PLMD, check out our RLS Treatment Page.
Sent: Friday, October 06, 2000 9:37
PM Subject: RLS
My 67 year old mother was diagnosed with RLS by her doctor at Kaiser Panorama City. She says her father had it and so does her sister. As long as I can remember, she has always had to shake her legs when she sat.
She has had several prescriptions over the year; currently on Sinemet which is not helping. She is constantly in pain and is not getting any sleep.
She has been doing a lot of walking during the day and joined a gym in hopes that strengthening her legs would help.
I'm very concerned as she has mixed alcohol and pills in order to get to get to sleep. She says she can't take being in pain 24-hours a day. Would a sleep disorder specialist help? I saw one letter re acupuncture, but it didn't seem to help that person. Her doctor is reluctant to give her the stronger pain killers as she was addicted to them. She says tylenol codeine used to help.
What can we do before she gets so desperate that she overdoses? I'm not sure if we should look for another doctor. Perhaps a pain management specialist?
Sinemet is no longer used much (if any) by most sleep specialists who are well versed in RLS (unfortunately, not all are as up to date with RLS as they should be). Pain specialists will likely have no expertise to treat RLS. Mirapex and Requip work much better than Sinemet and often obviate the need for narcotics. There are lots of tricks to avoid narcotic addiction when treating RLS patients. There are also lots of other drugs to use in combination or to alternate with the narcotics.
Alcohol worsens RLS and although it puts people to sleep, it changes the stages of sleep such that the quality of sleep is poorer (and in fact may account for the hangover effect) and causes early morning awakenings.
Sent: Friday, October 06, 2000 9:52 PM
Subject: Addict or RLS victim?
Firstly, thank your for this website, it has been of great help to us in the last few weeks.
This is a very long letter but its a very long story! Im sure many sufferers also have incredible life stories but I havent yet read one like ours and Im wondering if there are others out there who have been in the same situation who might be helped by this story.
My partner has, over the last 2 years or so, come to realize that he has restless legs syndrome. This discovery has finally given him an answer to why he has struggled with opiate addiction (heroin and more recently methadone) since he was 19. He is now 45.
His experience of using has always been that it allowed him to function and take part in life rather than the opposite (life melting down) which most addicts experience. In that time he has done two university degrees and built a thriving practice as a psychologist. However, as he has been treated as a "junkie" by the medical profession and thought of himself as a junkie, his addiction has been the source of much distress in his life even though he has repeatedly described his legs and his inability to sleep to doctors. He has been treated as an addict who is just doctor shopping for drugs.
His attempts to get off the drugs have failed as he just does not stop "hanging out" i.e. - he never starts sleeping again except for around 1 hour or so in the morning at sun up. Of course the aim of rehabilitation is total abstinence so his 2 long stints in rehab resulted in him not sleeping and still being required to participate in a rigorous work schedule. Both times he ended up ill and bed ridden. He also ended up in jail for 9 months for marijuana (which helps ease his legs) and was drug free there. He managed to sleep the odd hour here and there, but of course had to get up and out for early muster. But he didnt have to work or function or look after kids there.
He has had a failed marriage due to the RLS. His wife insisted he go on methadone but the doctor treating him like an addict kept upping the dose until it was at what was considered maintenance level and absolute overkill for RLS. He has always wanted to be drug free, so decided to come off the methadone a long slow withdrawal process. When he got to the point of not sleeping (when the dose got until 10mg) life got very difficult. His wife had just been diagnosed with MS, and they both considered him to be just an intractable junkie. As soon as he got off the drug, she left. He continued to stay completely abstinent and after many months of no sleep (and no rest up roaming the house all night) he got so ill with a middle ear infection that he went back on methadone. That was 2 and a half years ago and it wasnt long after that that he came across a description of RLS in a book he had ordered on neurological conditions in the course of his own professional development as a psychologist. He was dumbstruck! However, his methadone doctor remained skeptical and suggested that it was simply the product of withdrawal.
This is where I come in. We had had a relationship spanning almost 5 years when my partner had been in his late 20s early 30s. I watched him come off heroin and knew that for him the "withdrawals" never stop. We had spent a few years seeing each other when he "wasnt" on drugs, but he was most times taking propoxephene and a codeine based cough medicine in order to get some sleep. I was well aware of his crazy legs, he would chase me around the bed at night, trying to cuddle and make love in order to calm them. He would toss the sheets around and destroy the bed, and when he finally did get a bit of broken sleep he would jerk (now know that this is PLMS) all night. Our relationship at that time failed, but not for lack of love. He was "all over the place" and had been told he had borderline personality disorder, was bipolar, etc etc (we now recognize his difficulties to be the result of sleep deprivation he is fine when he has slept, in fact you couldnt find a lovelier man). I fell pregnant and he didnt feel adequate to the task although he wanted me to have the child. I decided to have an abortion because he couldnt "be there for me". We didnt speak for 11 years.
Two years ago, I got back in touch with him (a long story), he was on methadone again after his wife had left and he mentioned, very much in passing, that he thought he had RLS. I had never heard of it, but asked a friend who had (her husband has a touch of it) and she said there was stuff on the Internet about it. I found the RLS foundation immediately. And as I read I knew that here was the man I had known. It suddenly all made sense. We started to see each other again, as I was moving close to where he was living.
He went through his divorce, which was difficult. The doctor put the methadone up and up. He decided to come off the methadone and face the legs. He started withdrawing off 90 mls in December 1999 and as is necessary with this very cruel drug dropped his dose slowly every fortnight for 7 months. He had his final dose of methadone at the beginning of August 2000. His doctor wasnt very interested in the whole thing and at the 2 appointments I attended he seemed disbelieving about "the legs" and very over it. The appointments were no longer than 5 minutes. He dropped my partner off too high a dose in the end, which threw him into severe withdrawals, and his legs were "hysterical". In the two months since life has been hell. He has been determined to stay off opiates and so he goes for 5 day stints with no sleep up all night pacing and banging his legs around, until he got so beside himself he has taken something (very small doses of heroin which allowed him to sleep or small amounts of propoxyphene which allows him to get a little sleep). He is now getting RLS in his arms as well and across his shoulders. He gets tired and angry and difficult to be around. On top of this he has Hepatitis C a disease for which rest is vital. The liver is the seat of anger, and his is very distressed.
He has little trust of Western doctors, they have not listened and his experience of them "guinea pigging" him for his symptoms without not knowing what was wrong has had a terrible effect. Over the years they have given him Benzes and levodopa and sedatives and antidepressants, which have either not helped or made it worse (especially sedatives, tranquilizers and anti-depressants) and then finally just decided that he his an addict looking for drugs. My partner and I thought that some serious acupuncture might help, and he has spent thousands of dollars on herbs and acupuncture over the last 2 months (with the help of his parents because he had to stop work when he stopped methadone). It has helped his general health, outlook and the withdrawals, but the bottom line is that when all the withdrawals are over his crazy legs are still there. It is so confusing because it is sometimes difficult to tell the difference between the effects of the legs, sleep deprivation and opiate withdrawal.
Finally after weeks of no sleep, he agreed to go to a doctor, we have seen him once. We were fortunate to find, first go this time, a doctor who might help. He told us 3 times during the consult that he believed us. He prescribed a controlled drug (oxycodone 30mg). He also is Chinese trained and will do acupuncture on our government bulk billing system. We dont think he has much experience of RLS, but he seems willing to go with the diagnosis. More importantly probably he has a lot of experience working with addiction. He had to talk my partner into agreeing to take the oxycodone. In the 3 days since it has been a struggle. My partner doest want to take it because he is scared of getting his tolerance right back up again. But he needs some sleep so desperately. It has worked a bit but we are fiddling with the dose dropping it (cutting it down to about 10mg - its a suppository) because he is so scared of getting really addicted again and he didnt sleep last night. I cant seem to convince him to just stabilize and wait for his next appointment in three days time. He wants to try tramadol but the drug companies advice (here in Australia) is that you shouldnt give it to anyone with opiate addiction as it can throw them into withdrawals. We are confused because on the Southern Californian Support Group web site there seems to be many reports of people using it for drug holidays from opiates. He really wants to try it as apparently it is not so addictive, however, at this point it looks as though he might have to go through many sleepless nights to get his tolerance down before he can go onto the tramadol. He is terrified of trying any of the anti-Parkinson drugs, even Mirapex, as his previous experience with levodopa made him feel terrible and very drugged. Any advice? Do you have other experience of people who have become addicts because they had this disorder without knowing it? We wouldnt be at all surprised if there are quite a lot out there.
The other interesting thing is that he believes he has had it since childhood. He was given antihistamines daily as a child for sinus problems until that drug was taken off the market! We dont know what it was. He remembers feeling constantly drugged as a child and it affected his school performance. At age 10 or 11 he came off the antihistamine and immediately had terrible trouble with his legs. Eventually he was diagnosed as having rheumatic fever, now we are not so sure that it wasnt just a severe case of restless legs.
I have seen several patients who have been former drug addicts (invariably to narcotics) due to RLS. At the time that they saw me, they were very reluctant to take narcotics for their RLS, but did well with Ultram (tramadol) and other RLS medications. There is no problem giving Ultram to former addicts or using it to alternate with narcotics for drug holidays.
It is only patients that are currently addicted to narcotics that have to be concerned about using Ultram as only an addicted person can develop withdrawal symptoms. Former addicts and patients taking regular drug holidays from narcotics (with or without Ultram) cannot get withdrawal symptoms.
Once your partner has been off narcotics for a while, then using Ultram is not a problem. Despite his bad experience with previous Parkinson's disease drugs, I would still strongly recommend Mirapex or Requip. Neurontin is another good choice.
A Reply from Above letter
Sent: Friday, October 06, 2000 11:59 PM
Subject: Addict or RLS victim?
Here is the rub - does he have to be off opiates(including prescription drugs) completely and for how long before he can try Ultram. Here is what has happened since he stopped methadone 2 months ago (came off at 2.5mls) After stopping the methadone he had terrible withdrawals for a few days. Then he tried using doloxene for about a week - 2 every four hours but he got really bad reactions, buzzing in head, and collapsed twice. Then he had another 5 days of nothing and no sleep.
Then he "self-medicated", was very restrained and cut it down to about $5 of heroin (Australian dollars! very small) and only once at night for sleeping over a period of 2 weeks.
Then over the last 12 days he had:
~ 5 days of no sleep with some doloxene (3 or 2 and then down to 1 a night) and then
~ one small "self-medication" and one night of sleep and then
~ another 5 days of no sleep with only 1 Doloxene per night, and then
~ one more small "self-medication" and one night of sleep,
~ then we went to see the doctor who gave him the oxycodone.
We know that the "self-medication" is hard to compare to anything but the whole 30mg oxycodone got Brett very very out of it and after a couple of hours of it on the first night he decided to evacuate whatever was left of it. The next day his reaction was that he just didn't want to take it and that he would prefer to not sleep. After some discussion we decided to cut it down and he had just over a 3rd of one suppository on the second night. It is however very difficult to cut up and control the dose.
When he doesn't have anything his legs are insane, the last 5 day stretch he had with no sleep - he felt as though he had no withdrawal, but only the classic legs symptoms. They start in the afternoon and then stop in the morning. But he gets so tired and depressed that he is confused about whether he is still withdrawing or just suffering from sleep deprivation. So would he be able to try the Ultram. The new doctor we are seeing is helpful but doesn't know a lot about RLS or Ultram.
Ideally, I would like to see him off all narcotics, including Dolexene, for at least 2 weeks. At that point it should be safe to start using Ultram, but only before bed. It might be alright to use very small doses of a narcotic 1-3 times per week to alternate with Ultram (only if necessary), if the Ultram does not work sufficiently well after a while.
It is still best to consider additional RLS drugs, so that the need for pain medication may be further reduced. A physician (neurologist or sleep specialist) who is more familiar with the RLS drugs would be very helpful in this regard.
Sent: Saturday, October 07, 2000 3:57 PM
Subject: How fast does Mirapex work for RLS?
I have just been diagnosed with restless leg syndrome. How long does Mirapex take to start giving some relieve? I am currently involved in a depression study involving Prozac,placebo ,25 mg melatonin & 50 mg melatonin. I of course am hoping that I don't receive the Prozac as I know it will bother my legs more. My doctor is hoping that I receive the melatonin which from other studies has shown not to bother RLS. Of course, I can't figure out if my depression came first from not sleeping or I couldn't sleep from being depressed. Anyway, I really want to know what long Mirapex takes to start working.
Mirapex should start working immediately. If it does not work at your given dose, then it should be increased (only under the supervision of your own doctor) by .125 mg every 5-7 days until it does bring relief. If it is not helping at a dose of .5 -.75 mg (4-6 of the .125 mg tablets), then it likely will not help you.
A Reply from Elaine
Sent: Sunday, October 08, 2000 12:50 PM
Subject: RLS and Marijuana
I know that alcohol can bother RLS. Is there any indication that pot (grass) bothers RLS?
Thanks in advance,
Marijuana may actually have a beneficial effect on RLS. This is what we have heard from several of our RLS patients who have tried it for their RLS problems.
A Reply from Elaine
Sent: Monday, October 09, 2000 8:09 PM
Subject: RLS & Depression
Right now my sleep disorder doctor is trying to treat me for depression with a study drug called melatonin. If this doesn't work, would lithium bother my RLS problem?
Thanks in advance,
Melatonin is a sleep inducing drug, not an antidepressant (as far as I know, except that insomnia may worsen depression), although that may be what your study is looking into.. The body produces melatonin naturally when day goes to night and the world turns dark (this can be defeated by staying in bright lighted areas). Some RLS sufferers have tried this drug to help them get to sleep with limited success.
There is no data on what lithium does for RLS, but generally when we have not heard much bad it is likely that it does not cause problems in RLS patients.
Sent: Saturday, October 07, 2000 3:27 PM
Subject: Mirapex question.
My wife has been diagnosed with RLS and has begun taking Mirapex to alleviate her symptoms. Initially (06/16/2000) she was on 0.125 mg at 3/day (one at supper, two at bedtime). The Mirapex took about a week to show any effectiveness, and that lasted for one week in duration. After the initial "feel-good" period, she began to experience a burning pain accompanied by stabbing and sawing pain in her legs between the knee and ankle. Upon hearing this her neurologist increased her dosage to 0.25Mg X 3/day (a mutual decision), which did not make the burning pain go away.
Various drugs were tried, and diagnoses offered, but none stand up after a visit to a new physician/specialist. It's been about three months of Mirapex now (09/20/2000). An internal medicine ANP suggested we titrate off of Mirapex (sorry about the "we", it's just such a part of both of our lives currently), and in doing so, she experienced another feel-good period of about two days, and then the RLS began again (began titrating on 09/21 and completed it on about 10/02 or thereabouts. Feel-good occurred on 09/30&10/01). She restarted the Mirapex again at 0.25 mg at 1/day (10/03/2000), and had a three day feel-good (10/04-10/06) and now the burning is back.
After all that drivel, my three questions are:
(1) Is there a certain plateau where her Mirapex dosage succeeds, and above that threshold, a nasty side effect occurs? This burning pain does not interfere with her sleep (right now she is napping in the afternoon).
(2) Have you had any other reports of burning starting after Mirapex? I noticed in your various pages some mention of burning after Mirapex, but they were also mentioned in conjunction with other drugs being taken.
(3) What sort of specialist would be concerned with drug administration and interactions? She's currently on about ten different drugs for various conditions, and there could be some side-effect brought on by another of her medications that could be causing this. How do we go about investigating this?
Thanks for taking the time to read this, and in case you were wondering, here is the promenade of diagnoses: Diabetic Neuropathy (G.P.); RLS/Non-specific Neuropathy/Don't know (Neurologist- at least he didn't make something up at the end!); Connective Tissue Disorder (G.P.); Hypertension/Uncontrolled Diabetes (Rheumatologist); Diabetic Neuropathy (Internal Medicine ANP); "Not (or very mild) Diabetic Neuropathy (Physiatrist- he's current and is running an EMG in two days to confirm or deny Neuropathy)!
John D. T.
We have seen many RLS patients who have burning in their limbs as part of their RLS problems. A new burning pain in the legs as a result of Mirapex is very unusual, but I have seen it once or twice. It is very difficult to predict what the source of this burning pain could be as it could be an interaction of Mirapex and RLS, Mirapex and another of her drugs, or Mirapex and another neuropathy.
There are clinical pharmacologists (both M.D's and non-M.D.'s) do study drugs and drug interactions, but it is almost impossible for anyone to study every possible drug combination interaction.
As the cause of RLS is still completely unknown anyone can speculate (specialist, generalist, clinical pharmacologist, etc.) and probably have an equal chance to be right as to the cause of your wife's burning legs while on Mirapex. A 1/3 of RLS sufferers will have abnormal EMG's, so even if this test is abnormal, you are not much farther ahead.
I would suggest a change to Requip. It is quite similar and may end up being no better, but there is a chance that its side effect profile may be different and thus not cause the burning problem. Another choice would be to add or change to Neurontin which is often very helpful for treating pain syndromes and RLS.
Sent: Sunday, October 08, 2000 6:22 AM
Subject: Restless legs and periodic leg movements
Two years ago a sleep study confirmed severe PLMS. RLS symptoms began about the same time. Another sleep study three months ago confirmed barely contained PLMS which led to a change and increase in the medication. I'm currently on one 250mcg Permax in the morning, one 250mcg Permax at about 2.30pm and two 250 mcg Permax before sleeping. On a bad day I might take two 250 mcg Permax about 6.00 pm as well. We have just got a doctor interested in leg movement disorders in Melbourne and he makes a difference although he is hard to get an appointment with.
Sometimes I experience acute drowsiness, almost a compulsion to sleep, from about 3.00 pm to 5.00 pm. A few really early nights can help with this, but I wondered whether it was because of the Permax? It has been a bit of a trial and error process to get the right levels. I am usually better in the morning than late afternoon, early evening. I've also experienced quite bad constipation since taking the Permax in this amount. Is this normal?
Requip and Mirapex are not yet available in Australia but I have been told that some Aussies get them prescribed here and airmailed over, at quite some cost. Do you think the benefits of these new medications would justify going to this extent?
I have MS as well, although I am quite well, but my physician believes the MS may exacerbate the PLMS and RLS symptoms. Have you heard of this? The days I have when I feel clear headed and energetic after enough good sleep are treasured times.
Your page is great in terms of information. Thanks a lot!
Permax is fairly good for RLS, but Mirapex and Requip are usually significantly better. They tend to be more effective with less side effects (especially the nausea), but of course, this can vary quite a lot in any given individual. You may want to try a small amount and then you can tell if it is worth buying more. You will need fairly high doses of the newer drugs, as .125 mg of Mirapex (or .25 mg of Requip) is roughly as effective as 50-100 mcg of Permax.
Constipation can occur with Permax, but is not one of the more common side effects. Your daytime sleepiness may be due to the PLMS causing arousals during your sleep, thus causing poor sleep quality.
There is no known interaction between MS and RLS, so it would be pure speculation to suggest that they may be related or linked in any fashion.
Sent: Sunday, October 08, 2000 11:21 AM
Subject: Mixing Mirapex and Sinemet?
I am currently taking Mirapex daily for my RLS, but occasionally (like during PMS), I have breakthrough episodes that the Mirapex seems to take forever to control if at all even at higher than my normal dosage. During these times, I have been taking some Sinemet that was left over from when I tried it (worked great, but caused rebound) to get relief. I have got contradictory information on whether this was dangerous or not. Can I use the two of these together or do I need to skip the Mirapex at these times and just stick to the Sinemet for those particular days. If so, how long after having a dose of Mirapex do I need to wait to take the Sinemet.
The course of taking codeine for breakthrough which works well for me is rejected by my doctor who refused to provide me with codeine for anything beyond severe back agony even though it's obvious that I take it at very irregular times.
The correct treatment for your RLS exacerbation's is the codeine. If your physician will not give it to you for infrequent use, then you need to find another doctor who will prescribe it to you.
Sinemet can be taken with Mirapex without too much concern, as the doses of both drugs are relatively low for RLS (compared to the doses used for Parkinson's disease). The Sinemet should also not cause any problems if taken on an intermittent basis.
Sent: Sunday, October 08, 2000 3:31 PM
Subject: Pain in Calves and Knees
Thanks for responding to my questions on 12 September 2000. I am on a one month vacation in the Southwest and was unable to get my doctor to help me with my problem before I left. I am not sure that I will ever get him to help me with this problem. Also, there do not seem to be any doctors in my area with much expertise in this field.
I have a lot of pain in my calves and knees. Taking aspirin, Tylenol, Aleve, etc. seems to bring on the restless legs. As long as I do not take anything of that type the restless legs do not seem too bad. However, the pain keeps me awake. Is there anything that I can get over the counter that might help the pain?
Bill from WV
There is nothing over the counter that reliably will help RLS. If you are near Downey, CA, you can make an appointment to see me in my office (562-904-8200)
Sent: Sunday, October 08, 2000 6:41 PM
Subject: Drug holidays
Thank you for your informative site! I have had RLS and PLMD for 30 years and probably all of my life. I have tried most of the medications available. I cannot take Requip and Mirapex now gives me insomnia. I am currently taking:
6 p.m.: 400 mg Neurontin
Bed: 40 mg Oxycontin and 30 mg Restoril
This combination is giving me a fair amount of sleep and I can work the next day. It is the best I have had in two years. Do I need to take drug holidays with any of these medicines and if so, what would you suggest and for how long?
No drug holiday is needed for Neurontin, but they may be helpful for Oxycontin and Restoril. One weekend every 2 weeks (more or less) seems to work very well. If you are having too much difficulty taking these drug holidays (do not do holidays for both drugs on the same weekend), then using Ultram instead of OxyContin and Ambien instead of Restoril may also do the trick.
Sent: Monday, October 09, 2000 6:57 AM
Subject: Drug holidays
I recently read a comment that you made in a reply to an RLS sufferer concerning "drug holidays". You said that with some doctors "drug holidays" are controversial. Does that mean the doctors would rather the patient 'continue' taking the medicines, or that the controversy is concerning the 'long term' use of certain medicines? I had mentioned 'drug holidays' to 2 different doctors and was given a quizzical look by these doctors.
On another note, it seems that doctors will prescribe almost anything except Mirapex or Requip. I practically had to beg the last doctor I went to to get a prescription for Mirapex.
Most everything is controversial about drug holidays. They have not been well studied formally in the medical literature, so much confusion exists. Much of what I do is based on my own clinical experience with the using the drugs for RLS, and of course, this may not apply to other diseases such as treating back pain with narcotics.
What makes matters even more confusing is that there are patients who can almost any drug in significant doses for years and not get tolerant, while others get dependence with even smaller doses. We have no way of differentiating these two groups, so we may be treating one or the other inappropriately.
The length of the drug holiday is also not well understood. In the medical literature (what little of it there is), drug holidays are generally for a few months, which would be extremely difficult to do for our severe RLS sufferers. Most doctors know little about using drug holidays, and many who do know about them may not agree that they are useful. We have been very successful using drug holidays for our RLS patients who use narcotics and sedatives, but it is likely that some of these patients might not even need them.
The reluctance of doctors to prescribe Mirapex and Requip is due to the newness of the drugs (thus they have no experience using them and do not feel confident doing so) and the lack of guidelines for using the drug in RLS (except for sites like ours) for RLS, which is very different from the way they are used in Parkinson's disease.
Sent: Monday, October 09, 2000 8:47 AM
Subject: Leg cramps
You've given me some excellent advice in the past, and now I have another question.
I am plagued with nighttime leg cramps, varying from mild cramps in the calf or ankle which are relieved simply by standing up to moderately severe cramps in the back of the knee or calf relieved by applying towels wrung out of fairly hot water and to very severe cramps starting in the pelvic area and extending down the inside of the thigh and wrapping around the knee. The last ones seem to be as severe as childbirth pain, at least they are so intense that I cry from the pain and am doubled over with it. They usually last about 20 to 30 minutes even with the application of the hot towels.
I have no idea whether there is a connection between the cramps and RLS. I have a reference (HMO again) to see an endocrinologist since I take multiple medications due to numerous health problems in this 80-year-old body and wanted an expert to analyze them and their inter-relation.
By the way, I do take 250 mg Quinine Sulfate at bedtime, but I still have the cramps. I respect your opinions and would be very interested in any information you could furnish me on these cramps.
Thanks again for all you do for us,
Eleanor G., Glendale CA
Leg cramps and RLS are not related but most doctors will interpret RLS as being leg cramps so will treat the RLS inappropriately with quinine. Your problem does sound like leg cramps. Normally, your dose of quinine sulfate at 250 mg should be sufficient to take of this problem. It is a good idea to see a doctor to review your medications and make sure that they are not responsible for your leg cramping at night.
Make sure that your electrolyte (sodium, potassium, chloride) levels are checked, as they can sometimes be responsible for leg cramps. If no other problem is found, you may need a higher dose of quinine sulfate, such as 325 mg.
Sent: Monday, October 09, 2000 9:44 AM
Subject: RLS and infants?
I'm a 27 year old female who had these symptoms during the 3rd trimester of my pregnancy last year. I called the feeling "busy legs" to my husband, and told him I felt like i needed to go run around the house. It was driving me crazy, because a month before my son was to be born, I couldnt get a full night's sleep! The problem went away after he was born, but now I believe my 1 year old son is experiencing this.
Have you ever heard of an infant with this? My son rotates his arms and legs, and kicks and stiffens them and cries when I'm trying to get him to sleep. His little legs get so active, and he seems so frustrated. All night long he fusses, rolls, flails his arms and legs, and he never sleeps more than 1 hour at a time. It really looks like he's feeling what I felt during my pregnancy with him. Is this possible? He's 13 months old.
Thanks for your feedback,
Many RLS sufferers will report that they have had RLS symptoms every since they had the ability to remember them. They often have a history of being very fussy babies and complaints of growing pains when able to express themselves. It is quite possible that your 13 month old son does have RLS, although, at that age it is hard to know what else may be causing his different behavior.
It is impossible to know for sure if he does and no pediatrician would treat him at that age with RLS medication. This presents a dilemma for parents with RLS who see their children suffering with symptoms that they know are very uncomfortable. Unfortunately, at this point in time, there is really not much else that we can do.
A Reply from Jess R.
Sent: Monday, October 09, 2000 11:43 AM
Subject: ADHD and RLS?
Thank you for your quick reply. It's so interesting how there was reported to be some correlation possible between ADHD and RLS. Is this correlation currently being researched? Do you have any links to information between the two?
Thanks again for your help. I hope more is learned about what causes RLS. I would love to learn more in case RLS strikes me again later, and for my son, who I do think is going through this!
Unfortunately, only a minimal amount of research is being done on the link between ADHD and RLS. It is likely that ADHD is a grab bag of medical problems which can cause lack of ability to concentrate and that RLS is only one of many conditions which may contribute to an ADHD like problem.
Sent: Monday, October 09, 2000 10:58 AM
I have been very pleased with the results of taking 100 mg of Ultram at bedtime. I have felt a little "drugged" and heavy-headed the next day from it, though. So, last night, I decided to experiment and not take it at all to see if the "drugged" feeling would be there the next day. All I took was 5 mg of Hydrocodone and no Ultram. Needless to say, I was up all night. Today, I feel physically ill and really grumpy and not just from lack of sleep.
Does Ultram become addicting? It seems like my symptoms today are the exact opposite of how the Ultram makes me feel when it's in my system and that seems to tell me that it's a withdrawal type of thing. That's why I'm worried about addiction.
The other thing that worries me is that my wonderful neurologist doesn't exactly like Ultram because she's worried about seizures. I guess I should just stop being a worry-wart and just take what works best for me. But, what is your professional opinion about Ultram and addiction?
Thanks so much,
There is very little medical literature on Ultram and addiction. It is possible to get addicted to it, but it is an unusual, rare, event that likely would occur at higher doses than what you are currently taking. It is still a good idea to take regular drug holidays which may help prevent any dependence on the drug. Using hydrocodone at a higher dose may better relieve your RLS problems and be useful for Ultram drug holidays. It is hard to assess the next day effect off Ultram (and whether you had a withdrawal effect) especially when you do not sleep well without the drug.
Sent: Sunday, October 08, 2000 4:21 PM
Subject: :Rivotril (clonazepam) for RLS.
I have suffered from RLS/PLMD since 1984. My legs move the whole night and sometimes during the day. The "best" medication that helps is Rivotril (clonazepam). I use 1 mg a day and take it an half hour before going to bed. Then the movements are bearable but will not disappear.
As Rivotril makes relax all the muscles in the whole body, it causes a lost of urination during the night when I have some sleep or sometimes during the day when I am not quick enough to go to the toilet. To prevent this cause of Rivotril the urologist prescribes 0.4 mg Minrin. Moreover Rivotril makes my body always tired. Sometimes I can be irritable, depressive and sometimes I have behavior and mood disorders.
The neurologist has tried other medications, but up to now Rivotril will help me the best in spite of the causes. Does anyone have experience with Rivotril? How can you deal with it?
Rivotril (clonazepam) is a fairly strong sedative that is used for RLS. I do not like to use this drug for RLS because it has a very long half-life and stays in your system for several days. If you take it every day, most users (probably over 80%) will experience daytime fatigue or sleepiness. The shorter acting sedatives are much better, such as Ambien (zolpidem) or Xanax (alprazolam).
I have not heard of urinary problems with sedatives, including clonazepam, before. What might help your RLS even better and reduce the need for sedative medication, is to use the Parkinson's disease medications in addition, such as Mirapex, Requip or Permax (not Sinemet).
Sent: Tuesday, October 10, 2000 6:12 AM
I have had RLS for more than 20 years. The amount of sleep I was getting had gradually decreased through the years. By 1999 I was sleeping less than four hours each night. I had been taking Elavil for RLS for about three years (for rest). Premarin was the only other medication I was taking.
Then I found your website. Then I found a doctor who was willing to prescribe Mirapex. On October 5, 1999, I had my first dose of Mirapex, one .125 mg at bedtime, and I had eight hours of uninterrupted sleep the first night. But soon I began to experience discomfort in late afternoon, then early afternoon. We increased my dosage to .125 mg at midday and .125 mg late afternoon. Some afternoons, I continue to have discomfort which I control with physical activity. Other days, I have no problems at all. I continue to sleep at least seven hours each night. On occasion, I have taken a fourth .125 mg tab and have virtually eliminated symptoms for day and night.
But I would prefer to control the daytime symptoms with physical activity rather than continue to increase the dosage. My doctor has been very cooperative as we have experimented with workable dosages. (My ferritin level is normal). I am so lucky to have found your website and learned how RLS is best treated. Please know how very grateful I am for all your help.
Using physical activity to control RLS during the daytime is always a good idea. Your total daily dose of Mirapex is still low, so do not worry. If you find that your daytime symptoms are increasing, augmentation or rebound may be a concern, although they rarely occur with Mirapex. It that does happen, then a switch to Permax or Requip may improve the situation.
I am happy to hear that our website has been helpful to solve your RLS problems.
Sent: Tuesday, October 10, 2000 12:15 PM
Subject: Horrible reactions to Pergolide.
I find your site very informative and applaud you for trying to accommodate and answer all the different "scenarios" you get about different people's problems with RLS.
I have suffered from RLS since I was a teenager, now 39 years old, and have been through so much to get relief from my RLS which is on the severe side of the scale. At first I went to my primary care physician and she tried a variety of different medications to include a few (Quinine, Baclofen, Sinemet), with none of them bringing relief except the Sinemet for about two weeks until rebound and augmentation set in. I then contacted my psychiatrist, who was willing to try clonazepam, Ambien and Neurontin. However, the Ambien was completely ineffective, and the clonazepam and Neurontin didn't stop the RLS.
My primary care physician, did not feel she knew enough about RLS and sent me to a neurologist within my HMO, who flat out said, "I use Sinemet for all my patients and if you really have RLS, Sinemet will take care of it!" Well, I know how much my legs bother me and how many years I have suffered from not only sleep deprivation but the horrible sensations this condition causes. Obviously, I was madder than a "wet hen" when I walked out of that neurologists office!
I did some research on my own, and found a neurologist that had some knowledge in sleep disorders and RLS, and I made an appointment to see her. She has no doubt that I have RLS, but put me on pergolide, which has been a living nightmare for me. The nausea and vomiting have been horrible, and the only saving grace in this whole thing is that she gave me a prescription for Vicodin ES, which is the only thing that has taken away the RLS and allowed me to get a decent nights sleep. I only take two at bedtime, and it really calms the RLS down, if not stop it completely.
I see this new neurologist again on Thursday (10/12/00), and am going to tell her I have to give up the pergolide, as I cannot take the side effects. At this point and time, I'm not sure I'm ready to try any more "Parkinson's" medications for awhile. I'm exhausted by this entire thing.
What is the harm of taking 2 Vicodin ES at bedtime in addition to say 1mg of clonazepam, if it brings relief and gets me a good nights sleep? I'm not worried about addiction, and it is imperative that I get some decent sleep, as I work at a college here in Seattle and have for almost 18 years and cannot afford to miss work, due to a "bad" night with RLS! I do not feel "drugged" the next day, and this combination has worked the best for me out of everything I have tried. I can't endure a whole lot more "experimenting" with more new medications, when I know what is working for me.
Any feedback you could give would be appreciated.
Thanks in advance,
Permax (pergolide) is well known for causing nausea, especially if not taken with food (you do not say what dose you took, as the higher doses can really cause trouble, especially if you haven't worked up to them very slowly).
There would be nothing wrong about getting addicted to a drug that you intend to take for the rest of your life if tolerance to the drug did not come with the addiction (which it always does). As tolerance develops, you need higher and higher doses of the drug to get the same (or less) effect, until the drug hardly works at all. It is difficult to say who and when one gets tolerance, but it is a strong possibility with the doses that you are taking.
Despite your trepidation about the Parkinson's disease class of medications, I still strongly suggest trying Mirapex or Requip. They are so much better tolerated compared to Permax that it is definitely worth at least a short trial. Please follow my directions of starting at the lowest dose and increasing every 5-7 days by 1/2 to 1 tablet as necessary.
Sent: Wednesday, October 11, 2000 3:08 AM
Subject: RLS & Antidepressants (see previous letters above, Saturday, October 07, 2000 3:57 PM)
Do you have or know of any patients that are taking both anti-depressants and drugs for RLS? Do you also know how they are making out on both of these medications? My doctor wants to put me on Prozac but I'm afraid of the side effect on my RLS.
Antidepressants generally make RLS worse, but some actually improve on them. It is very hard to figure out why such different responses could occur and we have no test except for trial and error to see who should and should not get these drugs. Prozac has probably caused more worsening of RLS then help, but you must try it first to see.
The non-SSRI type of antidepressants (Prozac is an SSRI) are Wellbutrin, Remeron, and Serzone. These seem to have less of a chance of worsening RLS, but again, they must be tried to be certain if that will be the case with you.
A Reply from Elaine
Sent: Thursday, October 12, 2000 8:20 AM
Subject: RLS & Antidepressants
Do you know though of patients who are actually on both medications, an anti-depressant & a drug for RLS?
Yes, there are lots of patients who take both. Some have to increase their RLS medications to compensate for the worsening RLS from their antidepressant.
Sent: Thursday, October 12, 2000 7:50 PM
Subject: Mother with RLS
My mother suffers from RLS, as did her mother and myself and my two sisters. My sisters and myself only have slight symptoms as of yet. We are 48, 51 and 53. My mother is 78 and has been suffering for years. She's tried many of the medications mentions in the patient letters and after a period of time it doesn't seem to work anymore. Just in the last week and a half she has been to either urgent care or the emergency room because her legs are so bad that she is in tears from the pain and discomfort.
They have given her pain shots and just the other day tested her blood for any new information and to see if there was any air in her veins. No results yet. She went again yesterday and they have now given her Darvon. I'm not real thrilled to have her take Darvon, but it does seem to take the pain away. I don't know how long she can go on like this and I know my Dad feels helpless. He tries to rub her legs and she does have a therapist that comes to the house to massage them, but it only lasts a short time. It's a very helpless feeling to not know what to do for her.
My legs only act up on occasion but I can usually just take Excedrin and a glass of milk and go to sleep. Any feedback would be appreciated.
Darvon is the weakest of all the narcotics and if taken carefully (regular drug holidays, and using the lowest dose that is effective) may continue to be effective indefinitely. Ultram can be alternated with any narcotic and may help prevent addiction and tolerance to the narcotic.
Mirapex and Requip are currently the best RLS medications and may reduce or eliminate the need to rely on narcotics.
Sent: Friday, October 13, 2000 7:42 AM
Thank you so much for such an excellent site for RLS/PLMD sufferers. I constantly check in to get new information about PLMD.
History: I have had PLMD and sleep apnea for at least 43 years. My PLMD's have been so severe I have torn the knee cartilage in my left knee numerous times, so badly I have been in casts and doctors have wanted to operate. But I didn't see much sense in it if my knee was going to be torn up by severe jerking.
I was on Clonazepam from 1992 to 1999. The knee injuries after that were only occasional and minor. My tolerance to the drug seemed to rise so that I was up to 2 mg of Clonazepam. That seemed to work well until about 1998/1999. But then I couldn't concentrate well, felt as if my brain was tired or dead, suffered from depression, and fatigue. I also started jerking in my sleep again and injuring my knee and my hands and arms.
I had my fourth sleep study done, and it showed that I was having PLMD's 61 times an hour. The doctor put me on Mirapex and had me taper off the Clonazepam, which took almost a year. My withdrawals were so bad from the Clonazepam, I thought I would never get off of it.
I take 3 tablets .125 mg and 1 tablet .5 mg Mirapex. I have been on Mirapex for a year and recently increased the dosage by a .125 tablet, but I have been having severe jerking again and injuring my knee. The jerking has gotten so bad, it wakes me up. My body goes rigid when my arms and legs jerk. My hands curl up when I am jerking. Frankly, it is scaring me. I had such a bad night two days ago, that last night I took a 1/4 mg. of Clonazepam out of desperation. I did better last night and slept well without injuring myself.
I read the October 7, 2000 questions about Mirapex on page 30 of the RLS site. I too have developed neuropathy in both my feet since I have been on Mirapex. I experience numbness in feet, sharp, burning stabbing pains that cause my feet to jerk as if someone actually stabbed my feet. This varies in intensity and if I exercise my feet and legs at night it seems to relieve the symptoms. The stabbing pains in my feet and toes wake me up at night. Now the stabbing pains are starting in the daytime. I haven't been checked for diabetes, but I do check my blood sugars with a monitor and fasting is between 112 to 123. I will be getting this checked out.
I had an EMG test and will get the results tomorrow. The neurologist I am seeing now suggested Sinemet, but I know that has proven to be ineffective.
I still miss the Clonazepam. When it did work it seemed to control the PLMD's better, but I think had become too tolerant to it and was on too high a dosage. It also contributed to my weight gain. I am very overweight and hate it.
As far as food and natural remedies: I don't drink tea, coffee, or sodas. I don't take any drugs with caffeine. I don't use aluminum based deodorants or eat lettuce. I am trying to get off the ice cream. I hadn't been a B-complex, but have started on that this week.
My 88 year old mother also has severe PLMD and has worsened with age.
Here are my questions:
1. The majority of the questions on your website are from RLS sufferers and since it is so similar to PLMD, can I assume that the questions and the replies may also relate to those of us who suffer from PLMD but not RLS?
2. I have never taken drug holidays and am wondering if that would help from building up tolerance levels to drugs. If so, what do you suggest regarding drug holidays?
3. Would it help to take a drug such as Mirapex along with a small dose of Clonazepam? Or Should I consider going off of Mirapex and going on another drug? If so, what might work? My son had epilepsy, but my sleep study EEGs are always normal. I have wondered if there might be any relationship and if an epilepsy medication would be better for me?
Thank you so much for your help and for so many others as well.
Most of what applies to RLS does apply to PLMD, but not always. Some of the drugs work better for RLS than for PLMD (see our RLS Treatment Page for more details).
Klonopin is not my favorite drug for RLS or PLMD. It sounds as if you already got tolerant to this drug and also had problems with daytime sedation, which are very common due to the long half-life of this drug. If you do need a sedative at night, then Ambien or even Xanax are better choices. You can take a short (2 day) drug holiday and get these drugs but due to the longer half-life of Klonopin, a 5-7 day drug holiday (or longer) to get the same benefit.
Sedatives can be taken along with Mirapex, so that is not a problem. Tolerance to Mirapex occurs very infrequently so there is generally no need to take drug holidays from this drug.
Sent: Saturday, October 14, 2000 5:00 PM
Subject: Low ferritin levels & RLS
I have had 2 ferritin tests done a week apart. My first ferritin level was 6 & my second was 5. I understand that it's very likely that if your ferritin level is below 45 or 50 that that can be a definite cause of Restless leg syndrome. However, my hemoglobin level showed normal on a different test at the sleep clinic lab. Does this make any sense to you?
Also, could you please explain about ferritin levels & hemoglobin levels? If not, do you know where I could get some info on this on the internet?
Thanks in advance,
Hemoglobin needs iron as one of its building blocks. Even if the building blocks are in shorter supply, the body may compensate by working harder to make more hemoglobin and be able to keep a normal hemoglobin level. You can measure the iron levels in the blood, but an even more sensitive indicator of iron supplies, is the serum ferritin levels, which represent the iron stores.
Just as workers can continue to work on a brick wall with their on hand bricks, even though the warehouse is very low on bricks, so can the body produce hemoglobin when the body stores are low. The iron may be diverted away from other places, such as helping to make dopamine, which is needed for RLS.
Your ferritin levels are quite low. You should have your serum iron levels also checked to see if they are low. Supplementing with iron may help, but there are no guarantees that adding iron supplements will improve your RLS.
Sent: Saturday, October 14, 2000 7:06 PM
Recently my aunt committed suicide. One of the reasons cited in her note was the extreme pain of RLS. Are there been other cases like this?
There have been many RLS sufferers who have complained about severe depression due to the chronic pain of their RLS. Many of these have had suicidal thoughts. I have heard from the family members of only a few RLS sufferers who have actually successfully completed the act.
Sent: Tuesday, October 17, 2000 10:25 AM
Subject: RLS and Amino Acids
Have you heard of anyone with RLS having any success with Amino Acids - namely, phenylalanine, tyrosine and tryptophan. I have heard from a friend who has RLS and said since going on these amino acids, her RLS is completely under control. Do you have any thoughts on this treatment.
Rosemarie, age 61
I have not heard or read of any evidence that amino acids of any type have any influence on RLS. We do get a lot of anecdotal reports of different RLS "cures", but few, if any of these seem to help other RLS sufferers.
Sent: Wednesday, October 18, 2000 10:12 AM
Subject: Treatment for PLMS
After suffering with PLMS for more than 20 years, my husband was diagnosed through a sleep study as having severe PLMS (up to 90 awakenings per hour) in November last year. Since then, he has tried many medications trying to find some kind of relief.
His sleep doctor immediately put him on clonazepam 0.5 mg graduating to 2.5 tabs per night. This resulted in no relief from the PLMS, but exacerbated his sleep apnea (not a major problem prior to Clonazepam). His sleep doctor's solution was CPAP rather than change meds, so we changed Drs. Despite the problems with clonazepam, hubby is still taking the clonazepam as it aids his insomnia, whilst trying other meds to try and relieve the PLMS symptoms.
On top of the clonazepam, hubby takes 1x200mcg Oroxine daily, 1x20mg Feldene (Piroxicam) daily, and approximately once a week, takes 3 hyoscyamine hydrobomide for abdominal pain caused by a twist in his intestine. He recently weaned himself off Anafranil, 8x25 mg per night.
The medications he has tried so far with no success are Madopar 62.5 (Levodopa + Benserazide) - 50mg/12.5mg @ 1 per night. Sinemet 100mg/25 mg @ 1 per night. Quinine Bisulfate 300 mg @ 1 per night. Tegretol CR400 400 mg @ 1.5 tabs per night. All meds have been supplemented with Vitamin E, Magnesium and or Calcium, and have all been tried together in different mixtures.
He did have a little short lived success with Catapres 150 mg @ 1 per night, and Lioresal 10 mg @ 1 per night.
We are trying to educate our GP - he has thought the solution was single beds! We do not see the problem as a laughing matter though! What do you recommend should be the next line of meds we should try, and what, if any would interfere with the meds he has to take (i.e. Oroxine, Feldene)?
Debby B., Australia
PLM's causing 90 awakenings per hour are clearly not a laughing matter. You are also right that adding CPAP for sleep apnea induced by clonazepam (a very predictable result) is not the best form of therapy.
PLMS can often be difficult to treat, but there are other alternatives. Sinemet and Madopar should have helped, but they may not have been at high enough doses. As you do not have RLS, the dose of these medications may be increased until improvement has occurred. Mirapex and Requip are better, but they are not currently available in Australia.
The non-benzodiazepines (Ambien and Sonata) sleeping pills may work better than clonazepam, as they do not cause as much worsening of sleep apnea (they may cause a little worsening, but generally not enough to warrant stopping them or adding CPAP).
Neurontin is another good choice which can be tried and slowly titrated to an effective dose. You may even find that you need a combination of the above medications to solve the problem. It takes a physician familiar with the drugs who is very patient and is willing to use educated trial and error to come up with the correct mix of medications that takes care of the problem.
There is no problem with the other medications that your husband is taking and PLMD or any interactions with the medications that I have suggested using for PLMD (except possibly hyoscyamine hydrobomide, which may have some potential to worsen RLS/PLMD)
A Reply from Debby B.
Sent: Wednesday, October 18, 2000 9:21 PM
Subject: Re: Your advice
Thank you so much for your prompt reply! However your reply has raised one or two questions. If my husband were to start taking either the Sinemet or Madopar in a higher dose, what dosage would you suggest. Also, we have read many times of the problems with Sinemet - do these problems only apply with RLS patients, or will rebound occur with PLMS as well.
How do we find out if the other medications you suggested are available here in Australia?
It is more difficult to assess when you have the correct dose for treating PLMD compared to RLS, because the PLMD occurs only when you are asleep, so one can only use indirect evidence (except for repeating a sleep study, which may be necessary to decide for sure if the drug is working), such as how you feel the next day. Once the dose is sufficient to allow for good daytime function (that is, no daytime sleepiness or fatigue), it is likely that you have hit on the right dose. As there are many other factors that can affect daytime function, it can certainly be difficult to be sure if you are missing the correct dose for other reasons.
Rebound and augmentation only occur in RLS, not PLMD.
Check with your doctor to see if the American medications suggested are available in Australia. Medications can be shipped in (several RLS patients have their Mirapex mailed in), but that is much more expensive.
Sent: Wednesday, October 18, 2000 7:17 PM
Subject: Just discovered RLS
I have suffered from what I lamely described as "tickle-foot". After any prolonged sitting (movies, plane trips) I would get an unbearable tickling sensation in my feet. The only relief I get is from whipping the foot about. I have had difficulty getting to sleep for years and now, at age 43, it's getting worse. I have had 3 nights in the past few months with absolutely NO sleep. My "tickle-foot" will start as I'm lying down and I have to constantly whip the feet about. I'll move out to the couch so I can watch a movie and/or read a book without disturbing my wife, which sometimes works. Last time this happened I earnestly prayed to die so as not to go through this torture again.
I only discovered RLS today when I did a search on "sleep disorders" and saw "Restless Leg Syndrome" and about had a heart attack. I've always been pretty embarrassed about this disability and never really talked about it. I'm very happy to know that I have an identifiable condition. I made an appointment with my doctor for tomorrow morning and will bring the info on RLS from this web page with me.
Wish me good luck.
I will wish you good luck as you may need it as most physicians know very little about RLS and even less about treating it. Make sure you bring in as much information about the medication treatment (you may want to copy most of our RLS Treatment Page) so that your doctor may have some guidance and direction.
Mirapex or Requip are the best choices to start with considering the severity of your RLS.
Sent: Wednesday, October 18, 2000 8:15 PM
Subject: Re: taking Mirapex sporadically
Could I take Mirapex sporadically for PLMD? I took it last night for the first time and had a little trouble driving today. Will this get better? Does Mirapex give rebound and augmentation like Sinemet?
Thank you so much for your answers,
You can take Mirapex sporadically for PLMD, but that means that you will not sleep well (your sleep may be interrupted by your PLMD) on the nights that you do not take it. If that is not a concern, then intermittent use of Mirapex is not a problem. There is a good chance that your body may get adjusted to taking Mirapex and the side effects will diminish.
Rebound and augmentation rarely, if ever, occur with Mirapex.
Sent: Wednesday, October 18, 2000 11:04 PM
Subject: Severe RLS not doing well with medications.
I am Juliane from Germany.
Six years ago (I am now 60) RLS manifested itself and went rapidly from bad to worse, and now I have RLS 24 hours a day. I was very fortunate that my local neurologist had heard about RLS, so I was treated with L-dopa almost immediately. However, that neurologist has no further knowledge about RLS, so I always tell him what I need and what and when I take it.
The first 3 years I alternated between pills containing 100 mg Levodopa/25 mg Benserasid and 100 mg Levodopa/25 mg carbidopa, among them a Retard pill. I took them at random, when needed. After three years, my condition had gotten so bad that I had to take up to 500 mg Levodopa daily. I then went to Munich to the MAX PLANCK INSTITUTE to seek further help. There I was taken off Levodopa and put entirely on Permax (pergolide) together with 2 pills for the stomach. At the end of a week I was given a total of 0.80 mg Permax daily plus the stomach pills on a regular schedule, morning and evening. But I still had a slight sensation of pain in my left thigh. I didn't like Permax and it did not agree with me, it had too many side effects and I felt a reluctance toward it, besides I had to take the stomach pills for better tolerance. So I deleted Permax slowly by myself and replaced it again with Levodopa tablets.
Later I took 0.50 mg again at bedtime (dose which had the least side effects) thus reducing the levodopa to about 300 mg daily. By last year this did not give me the necessary nightly rest anymore. I then started taking 20 pain killing drops with my bedtime medication, having as main substance TILIDIN., a narcotic. Since then I have to take these drops 2 or 3 times in a 24 hour period, sometimes late mornings or afternoons, but specially during the night. I tried a drug holiday taking AMBIEN instead, but it didn't work.
In June and July of this year RLS became very bad, nothing helped, not even the Tilidin substance. In August I consulted another neurologist. She apparently has slight RLS herself sometimes and is more knowledgeable. I had heard of a new drug Mirapex. The new neurologist prescribed it. I had to take the medication regularly, four times a day , whether I had RLS sensations or not. I had to start with a low dosage Mirapex but was prescribed to take in addition a daily dose of 400 mg Levodopa. I thought one took just Mirapex without Levodopa, but I must have been mistaken. During August and September while increasing Mirapex I felt terrific, even so I still had to take the Tilidin drops twice or tree times a day. 20 drops are half of the recommended dose at one time - normal daily dosage are 80 drops, dosage can be increased to a maximum of 6 x 40 drops.
I am taking now mornings, midday and evenings 1 x 0.18 mg Mirapex and 1 x 100 mg Levodopa/25 mg Benserazid At bedtime I take 2 x 0.18 mg Mirapex and 1 x 100 mg Levodopa/25mg.
So far the month of October has been terrible. I am always sleepy during daytime and my legs seem to hurt rather being restless. I have very often a severe pain in my right upper thigh (it comes in waves (muscle spasms). Only the Tilidin drops help sometimes but not always and then only for a short time. Nights are very restless and the pain starts about 2 hours after bedtime medication.
A very disturbing fact is also that my kidneys seem to work overtime. I have to run at the latest every two hours sometimes every hour to the bathroom to empty a very full bladder. I hardly make it to the toilet in time. This of course disturbs the nightly rest additionally, by the way that problem is specially predominant during the night.
What can you suggest I do? I am about to abandon Mirapex because of the sleepiness during the day and aches in my legs. What brings on the frequent visits to the bathroom ? Why doesn't the present medication work anymore ?
I Thank you in advance.
Your case is obviously quite severe and difficult. We do sometimes combine Levodopa containing drugs with Mirapex, as long as the total dose per day of Levodopa is a maximum of 200 mg (which is what you are doing now). The Mirapex seems to be causing daytime sleepiness, which is a known side effect. A change to Requip, may or may not improve this problem and be as or more effective than Mirapex.
Neurontin (in addition to your regular medications) may also be helpful.
You may have developed some tolerance to your narcotic medications and a short drug holiday may help them become effective again. I know that you have had trouble taking the drug holidays, but they may be helpful. Ultram often can substitute for the narcotics either for drug holidays or take their place completely.
I have no idea why you are having more frequent urination as that is not a problem I generally see with these medications.
Sent: Thursday, October 19, 2000 6:01 PM
Subject: Ankle Pain - Possibly a form of Restless Leg Syndrome ?
My wife has been experiencing pain above her ankles at night. She does not have the twitching or jerking legs, just the pain which is bad enough to keep her awake at night. She has been to a podiatrist but nothing seems to be physically wrong with her feet or ankles. The pain is not present during the day, only at night during rest or sleep. She is active, and has had no injuries that might explain this ailment.
Can this be a form of restless leg syndrome ? If so, can you offer any suggestions
other than the narcotic remedies I have read about on this site ?
If she feels a very strong desire to move her legs with the onset of the pain, and if the pain is helped by this movement, then she has RLS. Mirapex or Requip are better choices than the narcotics for RLS. We add the narcotics only when the Parkinson's disease medications above and the sedatives are not helpful.
Sent: Saturday, October 21, 2000 10:56 PM
Subject: Weird reactions to RLS?
Since I was a child, I've had (perhaps) RLS. I've noticed in adulthood, that the more tired I am, or if I drink alcohol or take Xanax, it actually increases the symptoms. I have no pain, only the "electric current" described in other letters at this site. I can hold back the "tics" for a minute or two, but finally, I MUST move. It is totally involuntary. The leg(s) MUST jerk.
I have found two things that help. Oddly enough, a little caffeine helps a great deal. And, (not to be indelicate), an erection. Both sound strange, I know, but both are the only things I have found that work. Am I the only one? Anybody know WHY these would work?
Thanks in advance!
Your experiences with RLS are somewhat different than most, but there are many exceptions with most diseases and especially with RLS. Alcohol does seem to bother many RLS sufferers, but caffeine also worsens RLS in most and Xanax helps.
Sexual activity (usually orgasm) seems to help RLS in both men and women.
It is not understood at all why any of the above should help or worsen RLS.
Sent: Sunday, October 22, 2000 11:30 AM
Thanks for all the help you've given me in the past. Now I'm in trouble again.....I'm going through augmentation. For over 4 years I was on 1 Ultram 50mg. 1 clonazepam .5 mg, and one Ambien 10 mg. The combination worked beautifully and I never had any RLS symptoms. About 6-8 months ago I noticed the meds weren't working as well, and I started the "holiday" program. I used Percocet for Ultram. I tried Parlodel for clonazepam, and didn't change the Ambien. None of the new meds worked. Finally I got off clonazepam slowly, and used Mirapex, .125mg. I tried it at bedtime, but it didn't last night, much less the day. I tried using it in the daytime, and take it 3 times, usually at each meal, since nauseates me if I take it alone.
I was going on vacation, and nothing was keeping the night problems at bay, so my primary physician said to go back to the clonazepam (I'd then been off it a month or two). It worked, but not as completely as before. So now I'm on clonazepam AND Mirapex for the creepy crawlies, can't sleep, can hardly maintain my balance I'm so drugged out, have sunk back into deep depression, and don't know what to do. My doc doesn't know enough about RLS to be of much help.
I had gone to see an endocrinologist for a possible problem with my thyroid, and after talking to me for awhile, he suggested that I get my primary physician to refer me to a neurologist. He stressed this several times. I saw my primary the next day (my monthly visit) and he faxed a referral over to a neurologist. When I called to make an appt the office said he was booked up until January! She implied if my primary would fax another as "urgent" they could probably get me in earlier. My primary refused. (This neurologist is the only one on my HMO who is still taking patients.)
So here I am, going nuts, suffering augmentation of everything, my RLS is not just in my legs anymore, it's all over my body, especially in my chest, and I haven't the foggiest idea what to do. Do I just cut out the clonazepam cold, and hope I don't have a seizure or something (I tend to faint at times), or do I just keep up upping all my doses until I can hardly stagger from my chair?
I haven't the foggiest idea who to mix all the meds I'm taking. None are doing much good.
Thanks for any help.
Sorry to hear that you are caught up in the HMO blues. It certainly can be difficult to get the care the you need it some HMO systems especially compared to the old fee for service system where you would see a neurologist or sleep specialist the next day, if you wished.
Your case has obviously become more difficult and complicated. It sounds as if you became tolerant to clonazepam and taking it again may not be a good idea. Ambien is a better choice and should work well if you have another medication to take care of your RLS. If Mirapex is not working, consider Requip. Ultram and Percocet can be used on an as needed basis.
You do need the very close care of someone knowledgeable with these drugs and RLS. Unfortunately, the neurologist that you will see in your plan may not have the expertise with RLS and it does not seem like he will have the time and availability to monitor you as needed.
Sent: Sunday, October 22, 2000 12:47 PM
I've been on Mirapex for 3 1/2 months with doses up to 0.875 mg daily, but with no appreciable relief of symptoms. I decided two weeks ago to taper off it and stop.
Two days ago, on the evening news, there was mention of RLS and their very successful trials with the drug I wrote the name of above. I am very interested it trying it, and wonder what sort of success you have had with it, what you think of it, etc. I would appreciate your thoughts on it.
The drug is Requip (Ropinirole). It is very similar to Mirapex, but may work better (or worse) in different RLS sufferers. The dose is mildly different in that .25 mg of Requip is equal to .125 mg of Mirapex.
Sent: Sunday, October 22, 2000 6:36 PM
Subject: Sinemet & Darvocet SE, Beta Blockers with RLS
I thought I would get back in touch to let you (and others) know that Sinemet did indeed seem to compromise my immunity. Perhaps my chronically low white count made me more susceptible, but after 3 days of chills, and 5 days of sore throat, I stopped taking it. Even so, I continued for nearly a month with a chronic cold.
My neurologist then put me on Darvocet N-100 (since Mirapex upset my stomach). The morning after I took that I felt very weak. Oddly enough, my RLS seemed to subside for a bit. It is so confusing to deal with a problem that has remissions and exacerbation.
At this point, I have found that 1 or 2 Kava-Kava will help me relax enough to get to sleep when RLS (literally) kicks up. I guess I am fortunate enough that I do have periods when RLS seems less evident. One would think that some etiology or at least exacerbating factors could be determined. Are there any studies underway? I used to subscribe to the FMS/CFIDS newsletter which gave the latest information along those lines.
Even when my RLS seems to subside, I have poor sleep quality. In fact, I started back on the Doxepin 10 mg to see if it would get me over the hump of consistently waking up after only 4 or 5 hours sleep (unable to resume sleep). It seemed to make little difference, and in fact, since my sleep quantity has been inadequate, my blood pressure has elevated to the point that I have had to take Atenolol 25 mg. After restarting the Atenolol, the RLS seems to be recurring. Is this just coincidental, or do beta blockers have this reputation?
I also wonder if I should undergo a sleep study, to see if my sleep quality problem is RLS- related even at times when I am unable to detect that as a problem. Would this be advisable?
Thank you again for your help,
Many RLS researchers are looking into the etiologies of RLS and what and why it gets worse, but we are still far away from answers. Beta blockers often help RLS, so it is unusual for atenolol (Tenormin) to cause problems.
A sleep study may be helpful to see why you feel tired. It could rule out PLMS or even sleep apnea causing poor quality sleep.
Sent: Sunday, October 22, 2000 8:50 PM
Subject: RLS better with mineral therapy.
I've suffered from Restless Legs Syndrome from early on in my childhood. It was never a chronic problem for me and happened only infrequently, until recently. For reasons unknown over the past 6 months, I've been experiencing the terrible feeling of having to move my leg (or legs), the feeling of being 'jumpy' when sitting or lying down and having my legs twitch uncontrollably at certain intervals. The only relief is to get up and walk around, often at 2 or 3 o'clock in the morning. I drink alcohol, probably more often than I should. This seems only to aggravate RLS. I've taken Xanax for relief, but do not want to become dependent on drugs, if possible.
The reason for writing is I want to share with those afflicted with this condition something I've discovered today. I was watching TV, legs twitching, when I happened upon a commercial advertising some 'MAX' supplement. This product contains Magnesium, which they say could help relieve many disorders, RLS being one of them. Well, I've been taking supplements for years, including Calcium-Magnesium-Zinc tabs. After seeing this commercial, I opened the bottle and basically tripled my dosage (3 tablets, each containing 500 mg. Calcium, 250 mg. Magnesium and 12 mg. Zinc) for a total of 1500 / 750 /36 mg. respectively. And to my total surprise, my RLS had subsided, in a matter of hours! I was able to watch an entire program on TV without twitching once! I am extremely pleased with the results. I know this isn't the solution for everyone. I am not a doctor, but would advise caution when tripling any supplement.
My condition has greatly improved almost immediately by increasing Magnesium in my diet. I've read that alcohol can deplete the body of many important nutrients. In my case, this seems to have been the cause. I know how aggravating this condition is and how much grief it can cause. RLS has driven me nuts!
I will write back in about a week to let you know how my condition is. I am 'cautiously optimistic' at this point that Magnesium has helped me.
Some RLS sufferers have improved with Vitamin/mineral therapy, but these are usually the minority of cases. It might be a better idea to decrease or eliminate your alcohol consumption which is likely a more direct way to solve your problems.
Sent: Monday, October 23, 2000 1:24 PM
Subject: RLS and jerking worse with Permax?
My husband tells me I "jerk" once I fall asleep - every ten minutes or so...enough that he's gone to sleep in the other room to get some rest! When I go to bed I often feel like my legs are "tightening up" and that I need to stretch and rotate my ankles to get some relief - I often massage my shins and knees trying to get them to "relax".
I'm a 44 year old woman who has been taking pergolide (Permax, for a pituitary microadenoma) for the last 12 years or so and 20 mg Prozac for 5 years.
Recently I began taking an oral contraceptive to mitigate the initial effects of peri-menopause. Since then I have been having a pseudo-period for the last 13 weeks (I'm going to see the gynecologist tomorrow about THAT and maybe anemia?!).
Could the leg jerking - tightening - be RLS? Can extended use of Permax INDUCE RLS symptoms? I've seen the term "augmentation" on the site but don't know what it means.
Any advice would be helpful! I'd hate to have my 3rd bedroom become my husband's!!!
The leg jerking that you have is PLMD (Periodic Limb Movement Disorder) which occurs mostly while asleep. It is related to RLS in many cases, but can occur all by itself. Permax is a treatment for it, but you may need a higher dose.
Augmentation only occurs with RLS, so you need not worry that your leg jerking is getting worse from medication. The leg tightening up problem does sound like RLS, and it too will likely respond to a higher dose of Pergolide.
Sent: Monday, October 23, 2000 2:56 PM
Subject: Mirapex not helping RLS?
Thank you so much for this web site. Its helpful to read of other's experience with RLS. Here is my question. I am taking .125 mg. of Mirapex at night. Have been on it for about a year, after using Sinemet and developing rebound and augmentation. The Mirapex works well, but two things: one is that I awaken feeling tired, not refreshed, even if I have gotten a pretty normal amount of sleep ( 6 or 7 hrs), and the other is that it seems to be working less well lately.
I get mild sensations of RLS, even after taking the drug, but another hot shower, and massaging , especially behind the knees, helps, and I don't want to increase the Mirapex, although I sometimes do take another one. Do you think the tired feeling upon awakening has anything to do with the medication? Could you give me some advice on this?
Than k you for your help,
R.P. in New Mexico
You are on a very low dose of Mirapex. Most RLS sufferers need between 2-6 per day. It is likely that you need a little more, as it appears that your RLS may have worsened. Under the supervision of you doctor, you may want to slowly increase (by 1/2 or 1 tablet every 5-7 days) your Mirapex until you are on the correct dose.
Alternatives to increasing the Mirapex (which I think is the better way to go) would be to add a sedative such as Ambien or a pain killer such as codeine/Ultram at bedtime.
It is difficult to say why you are tired in the morning. Increasing the Mirapex may actually help the problem, especially if PLMS is associated with your RLS.
Sent: Monday, October 23, 2000 3:03 PM
Subject: Neurontin and Mirapex
My neurologist prescribed Neurontin to help me get off of Ultram because weaning myself of Ultram has caused my RLS to return. I haven't slept in 3 days because of the pain and muscle spasms in my legs. He has switched me from Baclofen to Mirapex to help me get some sleep. Should I be concerned about taking these two medication together?
The only other medication I take is .075 gm of Synthroid. Somebody really needs to get the information out that Ultram is addicting! It was represented as non-habit forming when I started taking it 15 months ago. How soon will the Mirapex work?
Ultram can be addicting, but this occurs very infrequently compared to the narcotics. Mirapex should work right away, but it needs to be titrated (as per our RLS Treatment Page) to the correct dose. Baclofen rarely works for RLS and most experts do not prescribe this drug for RLS.
There is no problem with taking Neurontin and Mirapex together, except that they both may cause some daytime sleepiness.
Sent: Thursday, October 26, 2000 7:51 AM
Subject: Diagnosing RLS with a sleep study?
As many have stated, your site is wonderful and "mind" stress relieving.
I have been doing research on RLS for a few months now, and find much of the information describing what I feel. I seem to have terrible bouts and then maybe not so bad times for a few days, but the tiredness has been catching up with me.
I have just come back from my sleep study experience. I know nothing yet, but the tech. told me I didn't show much leg movement. Does this have to be demonstrated in a sleep study in order to be diagnosed as having RLS? I cannot sit through a movie, long car trips drive me crazy, sitting through lectures and in-services do not happen, and I cannot sit long at the computer. On bad nights, I move from the bed to the couch to the daybed and around again, trying to find a comfortable place, or someplace I can push my legs against and find some comfort. What do you think?
Thank you for your time!!
Pam K., Marshfield, MO
There is almost no benefit in doing a sleep study to diagnose RLS. The diagnosis is made solely on clinical symptoms of discomfort in the legs occurring at rest or in bed (worse in the evening and better in the late morning) associated with an almost irresistible urge to move the affected limb.
Although 85% of RLS sufferers may have PLMD (leg movements) to some degree, this is not diagnostic of RLS as many patients have PLMD without RLS.
Sent: Friday, October 27, 2000 12:22 AM
Subject: RLS and burning pains.
I have RLS. I don't sleep well at night, when I do finally start to relax, my legs are jumpy! In the morning when I wake up, my legs and feet ache so bad! and then it's hard to walk at first. When I'm not busy during the day and sit down for any length of time, my legs jump. My feet feel like they are on fire sometimes, like the skin is being stretched so tight and they turn red and burn like they are on fire.
Other times, my feet are cold. I sometimes take my fists and hit up and down the calves and front of my legs or pound my feet up and down on the floor when I'm sitting. I went to a neurologist and they prescribed Klonopin. I also went to a rheumatologist and he said I had fibromyalgia. My hands hurt as well, but not as bad as my legs and feet!!!! No one I know has ever had any of these symptoms.
Your symptoms are quite typical of many RLS patients who suffer burning in their limbs in addition to the usual RLS discomfort. Klonopin may help the jumping legs somewhat and get you to sleep, but is will generally not help the other problems and will likely cause daytime sleepiness.
See a sleep specialist who understands RLS and you will likely get Mirapex or Requip which may solve your RLS problems.
Sent: Friday, October 27, 2000 4:45 PM
Subject: RLS during plane trips?
I just wanted to add my pet name for RLS to your website - my father and I have always called it Spongy Leg Disease (after the 'Spongy Brain Disease' nickname for Creuzfeld-Jacob Disease!)
I normally suffer during the day, whenever I am cooped up for a period of time. It is worse when I have had little sleep the night before, but the only way I know to fix it is to lie face down with my feet turned out at right angles to my legs. This means that I never suffer when I am trying to sleep! Is this still RLS if it has never prevented me from sleeping nor woken me up? My father suffers most at nighttime, and says this helps him too.
I am going on holiday after I graduate at Christmas and wondered if you had any tips for me, as the plane is 22 hours and there is nowhere to lie face-down (with my feet turned out) on an airplane?
There are 3 choices for treatment. The first would be to take a sleeping pill (Ambien, Xanax) and spend most of your trip asleep, so of course the RLS would not be bothering you. The second choice is to take a narcotic (Tylenol with codeine, Vicodin, etc) as needed during the trip to relieve your symptoms. The third choice is to use Mirapex or Requip, but you would have to establish the correct dose before you travel.
Sent: Saturday, October 28, 2000 4:02 AM
Subject: RLS relief
My RLS appears to have a genetic basis in the sense that all my siblings and father are sufferers. Mild alcohol consumption and exercise seem to exacerbate RLS for all of us. An evening glass of wine can be such a bad idea on reflection.What is the relationship between the dopamine aspect of RLS and alcohol?
I had a year's total release from RLS after an acupuncture session in which the final needle placed 8cm below my knee resulted in what I can only describe as a massive "discharge" of "energy" down and out of my leg. RLS has slowly crept back since then and subsequent acupuncture has had little effect.For me there is a definite correlation between tension in my legs and RLS.
Thank you for your website, I have learned a lot.
Roger W., New Zealand.
There is no known relationship between alcohol and dopamine, but many RLS sufferers have noted the same worsening of their symptoms with alcohol consumption. While light exercise may help RLS, moderate to vigorous exercise will most often worsen it.
At least 60% of RLS is on a genetic basis. Acupuncture helps a minority of RLS sufferers, but just as in your case, the improvements are often not sustained or consistent.
Sent: Saturday, October 28, 2000 10:02 AM
I was diagnosed with PLMD 2 years ago. I have tried different medications like, Depakene, Neurontin and Klonopin, with no results until I tried carbidopa/levodopa, 25/250. I have been taking it for a year and a half, one at bedtime and another 4 hours later if needed. Now for the last few months my symptoms are worse, much worse. I have started "jerking" before I go to bed, especially if I am very tired. I wake every morning between 4-5 feeling like I will jump out of my skin if I don't get up and of course the jerking starts if I don't get up. I also wake up all during the night.
I really feel like it's the Sinemet, doing more harm than good. I want off it. I am having all the rebound symptoms, I've done a lot of research. I have read that it is very hard to come off of, that you need narcotics to help, is that true? I hope to have a sleep study, if my insurance will approve it. I think there is more going on, I wake sometimes feeling like I can't breathe, like a panic attack. I jerk all over when I am asleep, arms and legs, my husband says my whole body. The feeling I get sometimes before I go to sleep is hard to describe, I guess like, If I don't move or jerk my body or limbs, I'll go crazy.
I was in a car accident 7 years ago and have had back surgery, with no relief to the pain. I do have back pain almost all the time and muscle spasms. I take Darvocet, and soma 4 times a day, doesn't help the pain anymore. My back has been worse going through this bad episode with the sleep disorder, I am tired all the time and it is hard to remember things and concentrate. Where do I go from here when I am off the Sinemet? With the symptoms I have described, do you think something like Xanax or Ambien would help?
Thank you and I look forward to hearing from you,
The feeling that you have before you go to sleep is RLS. Sinemet does help the RLS and PLMD, but it does sound like you are getting augmentation problems (which are extremely common with Sinemet). The best solution is to change to Mirapex or Requip, which work better than Sinemet and do not cause augmentation. Ambien or Xanax may be useful to help get you to sleep (and keep you asleep) while you are titrating up your dose of Mirapex or Requip (as per our schedule on our Treatment Page).
A sleep study will likely be of very limited benefit. First see if you improve with the above recommendations.
Sent: Saturday, October 28, 2000 6:13 PM
Subject: Ban Xanax for RLS!
I am writing to ask that you please reconsider recommending Xanax as a good medication for people with RLS. Xanax has high addiction potential. Rebound symptoms and a terrible withdrawal even at low doses used only at HS. I have used this medication and became very ill on it. I now use only Mirapex. I do have severe RLS, idiopathic, since childhood. I have it in my arms and upper back. I have sleep onset problems as well. I have been on a myriad of medication, some contraindicated, Zoloft and amitriptyline. I have used codeine, Roxicet, Klonopin and Xanax. Mirapex has given me great relief without the risk of addiction to narcotics. I am happy to see that you recommend it.
Drug manufacturers should warn physicians prescribing SSRI's, tricyclic antidepressants and other anticholinergic drugs not to give them to people with RLS. RLS is written off as a trivial stupid disease partly because of the silly name. We could legitimize this disease with a better name. Ekbom's disease was a more serious name.
Also, RLS can be disabling at times. I developed a total circadian rhythm disturbance leaving me unable to sleep except for 4 hours every three days. I ended up reacting to SSRI's and amitriptyline in my system, which had accumulated to toxic levels. My cytochrome p450 system is impaired or abnormal and I could not clear the drugs. Compound that with RLS and I was drop dead sick. Now that I am down to just the Mirapex...it has taken 6 months to clear everything else out...I can sleep. I am not a whiner, I work as a nurse and I bike 100 miles per week and bike race as well. I am a mom to 8 kids. Mirapex is truly a wonder drug despite the side effects. It should be the first line of treatment for most patients with RLS.
Also, cytochrome p450 2D6 genetic abnormalities are associated with Parkinson's disease, anyone doing research on this being associated with RLS? Thank you for your website.
My first choice for significant RLS that needs to be treated on a daily basis is Mirapex or Requip (I think that I have been quite clear about it on my RLS Treatment Page and in my responses to letters). If RLS is mild and needs to be treated on an intermittent, as needed basis, then a bedtime sedative is reasonable therapy.
Ambien is my first choice for a sleeping pill, but many patients cannot afford this drug or it is not covered on their prescription formulary. All benzodiazepine sedatives present a significant risk of addiction/tolerance if used habitually. When I do recommend Xanax as a second choice as a sedative/sleeping medication, I also recommend regular drug holidays, which, in my practice, seem to have eliminated problems with addiction (if the schedule is strictly adhered to).
There are unfortunately a significant minority (probably 10-15%) of RLS sufferers who do not benefit from Mirapex or Requip, and these must resort to sedatives and/or narcotics (assuming they have not gotten benefit from Neurontin either). I therefore must keep my recommendation for Xanax, when necessary, with the proviso that it be taken carefully with regular drug holidays.
I agree that drug manufacturers should give warnings about interactions with RLS (at least 5% of the population) as they give lots of warnings for diseases that occur less than .1% of the population (however, do not hold your breath for this to happen). The name change to Ekbom's disease will likely not happen, as the name RLS helps many sufferers find their disease by searches for leg problems on the internet and elsewhere. There is no research being done on cytochrome p450 2D6 genetic abnormalities in RLS as of yet. There is so much work to be in RLS and we have barely scratched the surface with existing researchers and funding.
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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