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Sent: Thursday, January 06, 2000 8:44 PM
Subject: Mirapex Tolerance
You may recall that I wrote to you earlier to thank you for helping me to locate a neurologist in the Northern Virginia area, and to advise you that my initial results with Mirapex had been very positive. Having noted several messages with respect to the issue of Mirapex tolerance, I thought that I would share my own experience: Yes, one does become tolerant to Mirapex! Though higher doses of Mirapex continue to bring relief to me, the relief is becoming harder to come by.
Specifically, what was an initial daily dose of between 0.125 - 0.250 mg per day now has been increased to about 0.75 mg per day; whereas the initial dose brought almost complete relief, the increased dose brings only marginal relief. Also, and this is somewhat inscrutable, notwithstanding equal daytime and evening doses, the medication brings relief only to the evening discomfort and none to the daytime discomfort. Still and all, I continue to believe that this is the best of the medications that I have tried, and I've tried many (Neurontin, Sinemet, Ultram, Tylenol with Codeine, to name but a few of the many). I'll keep you posted.
Tolerance to Mirapex is not common, but does happen (I do have several patients with this problem). A good solution to this problem is to switch to Permax, as there is no cross tolerance between these dopamine agonists. Start with a low dose of Permax (.05 mg).
If you then become tolerant to Permax, switching back to Mirapex works well. I have several patients who switch back and forth every few months and are doing very well.
Sent: Thursday, January 06, 2000 9:10 PM
Subject: Valium not helping RLS.
I am a 33 year old female that has RLS. just recently diagnosed. I have had problems with my legs for quite sometime, but it has worsened over the past few months. by family doctor put me on Valium (diazepam) 5 mg once every night. I tried that for a couple of weeks. no relief. still up all night pacing the floors. Recently he put me on Valium 10 mg a night. It still seems to be about the same. The past two nights I have taken the 10mg of diazepam, but also slept in the recliner with the heating pad on my legs. I was at least able to get a little shut eye.
I am going crazy and I don't know what to do. I am a mother of a seven year old son and a step-mom to a two year old. I have recently quit work, cause I couldn't concentrate or do a good job. I am loosing my mind and I seriously need help. I need to work and I can't enjoy my children. does anyone have answers for me? I am desperately seeking advice!!!
Speak to your doctor about starting Mirapex. You might need to add a pain killer such as Vicodin or Ultram until you get to the right dose of Mirapex. There is a good chance that your doctor will not be familiar at all with Mirapex and thus be somewhat reluctant to prescribe this great medication for RLS.
You may want to print out the Mirapex (and other sections) of our RLS Treatment Page and bring it to him. The dose of Mirapex is much different (much smaller dose) than for Parkinson's disease.
With the above treatment you should have an excellent chance of getting relief from your RLS symptoms.
Sent: Sunday, January 09, 2000 6:48 PM
Subject: Tolerance to Mirapex
I am an RLS patient for the past 30 years, in my case it is a genetic disorder my father had RLS. Through the years I have had different medications including Sinemet CR which I developed a tolerance to. Now for the past 4 month I am on Mirapex 0.25mg and for now I feel great and hope not to develop any tolerance as Jerry S. did. If possible I would like to know what was the dosage taken daily, and after how long did the tolerance develop.
Tolerance can occur to Mirapex at any given dose. What generally happens is that the previous dose which worked well, stops working and a higher dose is needed. Most patients who develop tolerance, are generally on the moderate to larger doses. The chances of developing tolerance at 2 or 3 of the low strength (.125 mg) tablets per day is much less likely.
Sent: Monday, January 10, 2000 8:40 AM
Subject: Use of Mirapex for RLS when trying to conceive.
Two years back, after I signed up my doctor to receive your medical bulletins, he prescribed Mirapex for me for my RLS. It wasn't until then that I finally got full relief at night and blessed sleep. No more night walking.
My second son also has RLS and is waiting now to see a Neurologist in hopes that he will prescribe Mirapex for him also. He and his wife have not been able to sleep in the same bed except for the few times he tried my Mirapex. Just one at night does the job.
Now, it appears my third son also has RLS. (All my children are grown and in their 30's and one in her 40's.) My third son posed a question that I haven't seen addressed in your newsletters, and that is: IS IT KNOWN IF MIRAPEX AFFECTS CONCEPTION OF A BABY OR ANY SIDE AFFECTS AS A RESULT OF A PREGNANCY?
He and his wife are trying to start a family, but at the same time he is suffering from lack of sleep because of his RLS. We both would certainly appreciate any information the medical field can offer on this subject.
Mirapex has not been studied yet in humans with respect to pregnancy and conception, but there is considerable animal data (in rats). There have been some issues in female rats about decreased implantation (of the newly formed embryo) with very high doses of Mirapex. This would of course decrease female fertility. There were no adverse effects noted on fetal-embryonic development once implantation occurred, even with doses of very high doses of Mirapex (71 times that of 1.5 mg three times per day).
Fortunately, there is rarely any concern about medication and male fertility. The only medications that can cause problems in males are ones that are related to the male sex hormones (testosterone, etc.). Other than affecting male fertility, drugs taken by males have no effect on the subsequent development of the fetus.
The bottom line is that there is no concern about your son taking Mirapex while he and his wife are attempting to conceive.
Sent: Tuesday, January 11, 2000 10:39 AM Subject: RLS
I have been have the RLS thing now for around two years. I am male 46 years old. My question is this, I was diagnosed with Rheumatoid Arthritis about 5 years ago and do you think this has anything to do with RLS or is tied to it in any way??? I notice when I am having a lot of attacks and pain I seem to get this RLS at night when I go to bed or after I have had some problems RLS creeps up on me.
Thanks and hope to hear from you soon,
There is a questionable link with Rheumatoid Arthritis and RLS, but this has not been confirmed by repeated studies. We have had some letters from patients who thought that their arthritis and RLS were connected, but there are really no significant medical studies that have looked into this.
Sent: Thursday, January 13, 2000 9:25 AM
Subject: Treating RLS with Klonopin (see previous letter, Page 24, January 4, 2000)
Hi Again! I wrote you about a week ago and I just wanted to give you an update. I went to my doctor to tell her that I thought RLS was my problem and not arthritis. She took blood work and gave me a prescription of Klonopin. I got the lab results back and it's definitely not arthritis and she agreed that I have RLS.
I was previously taking Ultram which was great but I switched insurance companies and Ultram is not covered so I quit taking it. The Klonopin has been making my whole body fall asleep (that tingling feeling) and has been making me very tired during the day and hasn't really helped with the achiness I have. Something I didn't mention in my first letter was I have the alcoholic gene in me and had read some other stories wondering if alcohol was a factor. I rarely drink but my mom is an alcoholic and so are many others in my family.
I love this site and will keep you posted.
Klonopin is not the best drug for RLS, even though it is many of the text books for this (this information is very out of date). It causes daytime sleepiness in most patients, just as it did with you. Xanax or Ambien are much better bedtime sedatives.
As per my first letter to you, Mirapex or Requip is a much better way to go, as these medications get rid of the RLS discomfort and avoid the need for sedatives or pain killers. Most doctors do not know these medications very well, so they feel uncomfortable prescribing them. If this is the case with your doctor (most likely), then ask (or demand if necessary) a referral to a doctor more familiar with these medications. Even if medications are deemed not covered by your insurance plan, any medication can be gotten if your doctor writes a letter of explanation (I do this all the time for Requip and Mirapex and get these medications with little problem).
There is no known relationship between alcohol or the alcoholic gene and RLS.
Sent: Thursday, January 13, 2000 11:59 AM
I was wondering if there are any medications that should not be taken along with Mirapex. Also, what is the half-life of Oxycodone and Hydrocodone?
So far, I'm very pleased with Mirapex. When I forget to take it though, I can plan on a full-blown RLS fit !
Thanks for your reply.
Oxycodone (Percodan) and hydrocodone (Vicodin) generally last about 3-8 hours. This can vary considerably depending on the person.
Drug interactions may occur with Tagamet (cimetidine) which can increase the blood levels of Mirapex.
Sent: Friday, January 14, 2000 8:18 AM
Subject: Requip and Mirapex side effect (see previous letter, November 11, 1999)
Help! Increasingly I get a bad, uncontrollable post-nasal drip from both Requip and Mirapex, about 20-30 min. after taking either of them, like clockwork. I have eliminated them both for several days-separately, of course-and like magic the drip went away. Also my sleep all but went away completely also.
The only way I can get to sleep is to take one or the other of the drugs with hydrocodeine--which I have to take in the wee hours anyway after the Mirapex or the Requip has worn off. I have tried 2 Sudafed instead of the codeine, but that does nothing to dry the drip up and probably wires me so I don't sleep as well.
As per my previous correspondence, I also take .75 mg of Klonopin because I cannot tolerate Xanax on a regular basis. Also, I did settle on 100 mg of Wellbutrin in the morning and seem to be tolerating that well.
I hate the thought of having to give up the only class of drugs that has improved the quality of my sleep since I started my RLS adventure many years ago. I tried pergolide (Permax) 3 years ago, and learned to tolerate the nausea, but then I got rebound, so I'm of course reluctant to go back to that.
One more thing--several years ago I discovered a nifty leg exercise that sometimes works to help me get back to sleep--but now, while it still quiets my legs (not always, of course) my hands and fingers come alive. Does this mean I'm getting worse? I honestly think that the only thing that's going to ultimately work for me is the narcotics,either that or a good baseball bat.
Any ideas would be greatly appreciated. Thanks as always for your wonderful work.
I have had patients complaining of post nasal drip with Permax, but not from Mirapex or Requip. I hate to suggest taking another medication to get rid of a problem caused by Mirapex or Requip, especially as the nasal sprays have not helped much.
If the narcotics have worked well, then Ultram may help you and is safer than the narcotics. It can be alternated with narcotics if necessary.
Your new symptoms may indicate some mild RLS worsening.
Sent: Saturday, January 15, 2000 5:20 AM
Subject: Side Effects of Klonopin and Sinemet
I wrote to you earlier regarding possible rebound from Sinemet. You suggested I switch to Mirapex, which I will discuss with my neurologist. During the day, I experience severe heel pain, tingling in the entire foot and heavy legs. I'm not sure if this is RLS related, but after 10 doctor's appointments and EMG testing, no doctor can come up with a reason for my pain other than possible calcaneal neuropathy. A neurologist suggested I should go to an orthopedic doctor and get a cortisone shot, which may provide temporary relief. The orthopedic surgeon decided that a shot would not be helpful and not the solution. In other words, he refused to administer the shot. I've also had physical therapy, which didn't help. I'm just about convinced that my pain in RLS related and not treatable. May I have your opinion?
I also have another problem and I'm not sure if it may be a result of taking Klonopin and Sinemet for the past five years. I have nasal and throat congestion which is getting worse. In the mornings, my nose is clogged and my throat is full of phlegm. I have post nasal drip all through the day and hoarseness. From the information I have, side effects of both of these medications can cause respiratory problems. Do you think the congestion can be caused by long term use of both of these medications?
Appreciate your help and thank you so much for your site,
If your heel pain is in both heels, then your symptoms may be due to RLS. It is very hard to prove that symptoms are due to RLS unless they get better with RLS treatment (see if Mirapex resolves your heel pain/heavy legs).
Your sinus problems are much more likely due to an allergic type of problem than due to medication. Stop the Sinemet and see if the nasal complaints resolve. I have never seen any respiratory problems from either Sinemet or Klonopin.
As I have repeated many times, Sinemet and Klonopin are both outdated medications for RLS. The newer medications (Mirapex/Requip and Ambien./Xanax respectively) work much better and safer and are used more exclusively by RLS specialists these days.
Sent: Sunday, January 16, 2000 4:42 AM
Subject: Nutrasweet and RLS
I've had sever RLS for several years. A neurologist put me on Neurontin which helps significantly. Recently, after reading material on Nutrasweet I decided that it's probably not a good thing to put in my body. I stopped using it entirely about 1 month ago. Since that time my RLS symptoms have almost completely vanished. I have not had to take the Neurontin in the last three weeks. Previously, I would never even think of going to bed without it.
Thank you for your RLS "treatment". We will see if others may notice improvement by avoiding Nutrasweet.
Sent: Monday, January 17, 2000 4:01 AM
Hi, found you this summer. Am writing to you now, it's about 5 a.m. have been up for quite some time with, guess what -- "my legs and knees ache". This has gone on for 25 years or longer. Think it really began when I was a child, had leg aches a lot then. You know people and doctors don't believe you when you tell them you haven't had a good night's sleep in 25 years. It is such a wonderful blessing that the medical profession has finally recognizes RLS as a bonafide medical problem. Have been told it has to do with neurological problems.
I have taken many, many kinds of medicine over the last 20 years or so. Nothing has worked until a few months ago when I found your site. I read some of the many letters and wrote down the medications some were taking. I went to my doctor with these. I began taking Sinemet CR and Ultram every night. I immediately began sleeping through the night even though I sometimes felt a little drugged in the mornings. I started to look and feel better.
However, as many of the letters on your site revealed, Sinemet doesn't offer a forever cure. I have been taking it about 6 months and it's beginning to not work on me. Am waiting with much anticipation to see the next drug that I am prescribed.
There is power in numbers and evidentially the number of RLS patients is growing,
Lots of RLS patients are given Sinemet which helps for a while as it did with you, but this is no longer the right drug for most RLS sufferers. Ask your doctor to change you to Requip or Mirapex. These newer drugs work much better with fewer side effects and problems.
Remember to take drug holidays from the Ultram. You may even consider alternating with a bedtime sedative (Ambien or Xanax) so as not to become tolerant of either one.
Sent: Monday, January 17, 2000 6:11 PM
You have mentioned that Tagamet should not be taken if you are on Mirapex. Is that the same for Prevacid? I take one each day for ulcers.
Also, is the standard starting dose of Mirapex one .125 tablet at bedtime? I' m wondering if that is an adequate dose.
Prevacid is alright to take with Mirapex (Tagamet interacts with lots of medications). The usual starting dose of Mirapex is .125 mg at bedtime (possibly 1/2 of a .125 mg tablets for elderly or sensitive patients), but most will need up to 2 or three tablets.
Sent: Wednesday, January 19, 2000 3:38 PM
Subject: "Pet Name for RLS"
I have just finished reviewing your list of pet names for RLS. I have had this condition since my early teens, and it has been waxing and waning for almost forty years! It was extremely bad during my two pregnancies, and for the past 7 years would be at that level were it not for various combinations of medications. After consults with 3 neurologists (one a specialist in RLS research, and another who himself has the condition) By that level I mean literally walking the floor ALL night to obtain relief from the terrible, deep, pains from my ankles to my knees; unable to sit on the toilet long enough to urinate. I am a registered nurse and have done a lot of research re: the condition,hereditary factors and various treatments and or medications.
What I cannot understand is how people could give "Pet Names" to a condition that is no joke. Do you expect people to have pet names to describe the pain that accompanies osteoarthritis, neuropathies, migraines, shingles,or pain from terminal diseases? I know how helpful it is to have a positive attitude and I guess I should credit those of you who have contributed to the list of pet names. I do not dwell on the fact that I have RLS,or feel sorry for myself, but I still know that even if I take my medication in the evening there is no guarantee that I won't go through hell for two to six hours.
Sometimes I wonder what it would be like,or will be like, to be a geriatric patient,unable to convey to my caregivers the pain I have, and be unable to get up and walk to find some relief. RLS is not a condition to be taken lightly and it is my opinion that more doctors and other healthcare professionals need more education about the condition.
The "Pet Name for RLS" section is not on our page for the purposes of humor. It is easy to understand why people have pet names for RLS. Most RLS sufferers do not know they have a disease, let alone that their affliction even has a name. You are right that no one would expect people to have pet names for most other diseases (although some do exist) as they are so well known that people do not have to invent a name for their problem.
The real purpose for the "Pet Name for RLS" section is to show the amount of ignorance that RLS sufferers (and their families) have about RLS. By supplying a list of non-medical names for this disorder, web surfers who happen upon our page may better recognize that RLS is the condition that they (or someone that they know who has trouble describing their condition) are suffering from.
We have gotten a lot of positive feedback from RLS sufferers who have just found out that they have RLS from reading our web site, and have gotten much comfort from seeing that their pet name for their leg problem is similar to others on our site. Some of the names are certainly funny. If I can bring a smile to RLS sufferers (those who are perfectly controlled by medication and even ones who are having trouble), then I think that would be added benefit to our list. As you can tell from the content of our web site, we do not take RLS lightly, so a small section that may add a little humor (and provide other benefits) should be taken in context.
Sent: Thursday, January 20, 2000 5:43 AM
Subject: RLS experience
I am 61 years old, and I have had RLS for several decades, much worse in my 50s. I realized I had it (as a specific syndrome) about 3 years ago. I found that Tylenol #3, which I was using for another condition, short-circuited it to some degree. Tried Klonopin, Elavil, several other meds, with no real help. About 16 months ago I started on Permax, prescribed by a neurologist at Mass General in Boston, and found great relief.
Concurrently with starting Permax, I was wrestling with a remedy for sleep apnea that I had had diagnosed a year before, and found a dental appliance worked to stop my apneas. Two remedies for two serious conditions! However, I found that though I seemed to sleep better, and was getting relief from RLS, I seemed to be sleeping only about 3-4 hours a night, waking about 3-4 am, feeling quite refreshed, not able to return to sleep; rather than fight it, I started reading when I awoke, until it was time to start the day.
OK so far. As months went by I find I pay for this pattern by getting sleepy now and then during the day, nodding off, especially in warm rooms, boring circumstances, etc., more so than usual. I tried light therapy for a few weeks to see if I could reset my circadian cycle, in case that had been disturbed. No help.
Recently I am having RLS symptoms returning during the night, about 3-4 am, e.g., my right foot starts to tighten up, perhaps twitch or tickle-feel, and contractions occur every 8-10 seconds, though weakly. I am up to 4 tabs of Permax (0.25 mg.) now, taken in the late afternoon. I am wondering: Should I try to get my Permax increased, or perhaps a second dose during the night? Or, should I move on to another RLS medication, such as Mirapex, which I hear is quite effective, based on the notion that I may be becoming tolerant of the Permax.
I need to make an appointment with my physician to discuss this, and she does not know a lot about RLS, but seems willing to try things to help; it would be hard to get back to the neurologist in Boston, besides the many months of delay in getting an appointment. HELP! Does anyone have any ideas on this? And does anyone have any ideas on this business of my only sleeping 3-4 hrs a night and then awaking feeling bright and refreshed?
Thanks for any help,
It is easy to answer your question as to why you wake up early and refreshed. After being sleep deprived for many years from your two sleep conditions, getting 3-4 hours of good quality sleep is better than a few nights of bad sleep before treatment. If you wake up refreshed and do not need to nap during the day (or fall asleep readily in the daytime), then you are clearly getting an adequate amount of sleep at night.
You are on a very high dose of Permax already (most patients need between 2-6 of the .05 mg tablets per day) so your assumption that you are getting tolerant is quite likely correct. There is no cross tolerance to Mirapex, so that would be a good drug to replace Permax.
A Reply from William S.D.
Sent: Friday, January 21, 2000 6:19 AM
Subject: Re: RLS experience
Thanks for your reply. I think you are right about my developing tolerance to Permax; for the moment I think I am going to try to ignore the late afternoon twitches or RLS I get if I sit still at that time of the day, and take the Permax at about 8 p.m. (it has an "action" of 10-11 hrs) to try to better cover the 3-6 am period when I seem to be awakening--lately I have noticed a little tension and some tickle/twitching symptoms during those hours. But soon, I guess it's on to Mirapex.
As to getting by with only 3-4 hrs sleep, my doctor agrees with you that that may be all I need. However, though I do not nap as such, I get periodically sleepy a number of times during the day, wanting to nap for a few moments, even while in front of my clients (I am a psychotherapist), which of course I fight through, and am able to return to normal. Then again, maybe my therapy is getting boring! (At least my clients don't seem to be falling into brief naps.)
I am concerned about this business of getting by with 3-4 hrs of sleep over time--the research I have seen talks of a "sleep debt" problem that can have bad effects on a person over time.
Do you see this as a problem?--I take it from your e-mail that you have studied this area in depth. Thanks. Bill
Getting sleepy a few times a day while doing psychotherapy is probably very common even for long sleepers. If you were sleep deprived, you would have no control over falling asleep in boring situations. The very sleep deprived patients will fall asleep often in moderately interesting situations.
The sleep debt refers to people who get less sleep than their body needs. This occurs when you go to bed later than you should on a chronic basis then set your alarm to get up earlier than your body would naturally wake you up (clearly not your case).
I have seen many patients in their 80's and 90's who rarely slept over 3 hours a night since being a teenager and were still in excellent health.
Sent: Thursday, January 20, 2000 9:08 AM
Subject: Crazy Legs
I have suffered with what I call "crazy legs" since I was a small child. As a child I would have my brother or sister sit on my legs at night so I could fall asleep; if they couldn't or wouldn't do that, then I would tie things on to my legs, socks, tights, once I even tied my portable stereo on my legs; it seemed that the pressure worked. I have tried many drugs, quinine seems to work best, but not great.
Recently, I have started to tie my legs again; not sure how it helps but the pressure allows me to get to sleep a little quicker. I'm not really sure, but I think I might have another kind of sleep disorder also; it takes me hours to fall asleep generally, and on the night when my legs are bad it is even worse. My sleep problems could all be because of my RLS, my doctor really doesn't know, and I live in a small town so trying to get out of town to see a specialist is very hard.
I do know that many times my days are filled with anxiety about how much sleep I didn't get last night and how much I will get tonight; sometimes I get frantic when I can't sleep. I can see why people get depressed when deprived of sleep. I am hoping someone will find out the exact cause and a "good" treatment, meanwhile we all suffer and do the best we can.
Trish W, 45 year old female in Colorado
It does sound as if you have RLS. Have your doctor prescribe Mirapex and you should do very well and be able to fall asleep much better.
Sent: Thursday, January 20, 2000 10:43 PM
I am 29, and have had RLS as a major factor in my life since I was 19. I have never been treated by a doctor who really knows anything about it. I have many theories of probable causes. I had leg cramps as a child. They would drive me nuts. My parents called them "growing pains". Were these the precursor to the restless legs I got as a young adult?
My RLS started in my arms, and I would only get sleep if I were lying on them. Hot water bottle and heat pads have helped on occasion. It them moved to my legs for a while, and now it is in my arms and legs. The pain is often so intense I can't stay still for more than a few seconds (at night). I have at one time or another considered the following as possible causes : coffee, pesticides, stress, anxiety, exercise, no exercise, cancer, gland problems, insecurity, etc. As you know, the frustrating thing is that you never really know. I just want to get on with my life.
This site has helped. Worrying about what it could be is half the problem. My pain seems to originate behind my knees and even at my elbows. My legs start burning from behind the knees and the pain shoots outward up and down my legs. Could there be any explanation as to why my joints seems to be the source of the problem? My feet are also extremely sensitive.
It feels like A) My muscles are being sent signals to tense up constantly, and the pain is from over use / abuse of the muscle tissue and B) There is electrical energy bouncing around inside my limbs with no where to go, sending the muscles into conniptions. Luckily my wife is a sound sleeper. I toss and turn "till about three am, and sleep to seven, on and off. I am woken up by the slightest thing. I rarely get deep sleep.
I have briefly tried prescription medication although I don't like the element of experimentation involved, and the potential unknown side effects. I am intrigued by the multiple references to Mirapex and Requip. (Please tell me you are not subsidized by them). I'll give them a try. My only relief to date has been caused by smoking marijuana. This allows me to disassociate myself from my body in a way. The sensations don't disappear, but the urge to jerk my legs and arms for relief disappears, and I can lie still and sleep.
As a result, I am smoking most every night. The sleep with marijuana is not good quality, but it is better than nothing and I am able to function the next day. What I need is some honest information about how marijuana compares to other treatments in terms risk, and long term health effects. I am also curious about drug interactions if marijuana is combined with conventional pharmaceutical treatments. If you cannot comment on this for some reason, could you suggest web sites/pages that would engage in dialogue about marijuana as a treatment for RLS.
Thanks for this great service,
With the amount of times that I suggest Mirapex or Requip on my web site, I am not surprised to see you ask if I am subsidized by them. Let me set the record straight. I am in no way, directly or indirectly, subsidized by the companies who make these drugs. The reason that I suggest them so often is that in my rather large RLS practice, I get such excellent results using these drugs.
I cannot be sure, but I think that virtually all the information on the use of marijuana for RLS will be found on our web site on our RLS Treatment Page in the (5) Non-conventional treatment for RLS section. I do not have any more information on the use of marijuana for RLS other than what you see on our web site. If you want to engage in more dialogue with others who may have used this drug, check out the RLS Cyberspace Support Group web page.
Other than the fact that marijuana is illegal and the long term effects are probably not fully understood, there is little reason to use this drug as there are others (Mirapex/Requip above) that work so well and are legally available.
Sent: Saturday, January 22, 2000 7:59 AM
Subject: 10 - 12 midnight window of RLS with Permax
Thank you so much for your expertise you share with us all. It's so great a comfort to find words of truth based on experience in a season of hurting.
I've successfully used Permax for the last six weeks (.05 mg 1 hour before bed - usually 8:00 p.m.) except for one time period: I usually go to sleep around 9 p.m. and fall asleep easily for an hour. Then RLS awakens me for an hour or two. After that the Permax allows me to sleep the rest of the night pretty well (huge difference than before Permax).
An additional bit of information that might help: I had tried Ambien; it worked well except I developed a nervous tic in my left hand and forearm weakness. Even with Ambien an hour before bed, I had the same sleep pattern as I do know with the Permax.
Any suggestions for this sleepless, unpleasant window? Because you've been suggesting Mirapex/Requip so regularly, is it wise to change to either of them? or to add one to Permax?
You have a very unusual RLS/sleep pattern which I have not yet seen. Normally, Permax works best after an hour and may last from 4-8 hours. You could change to Mirapex or Requip and there is a reasonable chance that they may work better and eliminate the problem. As Permax, Mirapex and Requip are all dopamine agonists which work on somewhat similar receptors, so only one of these drugs is used at a time.
Part of the problem may be that you are going to bed too early and that could be setting you up for problems with your sleep and RLS inherent circadian rhythms.
Sent: Monday, January 24, 2000 3:54 PM Subject: RLS & Seizures
I have seen a couple of postings on the internet regarding a possible connection between unexplained seizures and RLS. I have a 21-year-old grandson who has RLS and who has been having seizures for the last several months -- the only diagnosis has been stress and emotions. Have you heard of any connection with RLS?
Thanks again for all your help.
I know of no relationship between seizures and RLS. Anti-seizure drugs are used to treat RLS, but that is the only link that I can come up with.
Sent: Thursday, January 27, 2000 12:40 AM
Because of my nasal problems w/Requip and Mirapex, and because I think I have become tolerant of the Mirapex, I'm thinking of taking my neurologist's latest suggestion of Baclofen. If I do, what do I give up--the Klonopin, the Mirapex, and/or the Vicodin, and what about the Wellbutrin?
I note that one must build up the Baclofen slowly and similarly taper off if it doesn't work. So, worse case I'm looking at 2 weeks or longer of potentially really bad nights if the Baclofen isn't beneficial--not that the recent 2 months have been great--note the time of this note--but I want to make this as easy as possible.
As per my last note, I'm very reluctant to try Permax again. And I know Baclofen is different from the Parkinson's drugs, but is it possible to alternate Mirapex and Baclofen, assuming the Baclofen works somewhat?
Thanks so much.
Baclofen is a completely different class of medication than the other ones you are taking. You can alternate it with any of the other medications including Mirapex, or just take it concurrently. You do not have to replace any of your current medications, unless it works so well that you feel you do not need them. Often only trial and error can tell you what you can do without.
Sent: Friday, January 28, 2000 4:34 AM
Subject: Klonopin & Hydrocodone
I can't believe I have just found you! I have been taking Klonopin & hydrocodone for a couple of years for RLS and found out at your site last night that this is not the current preferred treatment. I started cutting back on the hydrocodone (was taking 2 pills/day) immediately. This I think I can get off of easily, but about the Klonopin? From what I understand this should be done gradually. How fast can I cut this back. I am on 4 mg of Klonopin now.
Is it possible to begin the Mirapex while getting off the Klonopin & Hydrocodone? The fear of the RLS hitting me full force again is scary but I need to get off the above medications. My husband has been telling me for months that my personality has definitely changed on the above meds. and it is affecting our marriage.
Thank you for being available,
Klonopin should be tapered of slowly, generally over 1-2 weeks. You may need another shorter acting sedative (Ambien is the first choice, but Xanax may do) to help you get to sleep on the short term. Mirapex can be started concurrently with sedatives (Klonopin) or narcotics (hydrocodone). It should eliminate your need for your current medications.
Sent: Sunday, January 30, 2000 1:58 PM
I have a few questions about Permax. What is the highest single dose that can be taken at bedtime if someone is not on any medication during the day? Also if someone has severe RLS all day, that gets worse as the day progresses, is it better to take meds an hour before bedtime, or to take some meds earlier in the evening? I also have PLMD, so I need the medications to be working through 8 hours of sleep.
Thank you so much for your help, it is appreciated so so much,
There is no official maximum dose of Permax for RLS, but single doses above .25 are unusual. If the dose gets above this dose, one should consider changing to another drug. A few patients have gone up to .5 mg at bedtime and done well, but those are the exceptions, not the rule.
Permax can be taken up to three times per day to control daytime RLS symptoms. It is quite common for RLS sufferers to take their first dose in the early evening to control their evening RLS problems.
Sent: Thursday, January 27, 2000 10:35 PM
Subject: Mirapex did not work!
I am a 43 yr. old male and I have had RLS since I was a child, though I did not know it until the last year. I was told I was having growing pains as I have found so many others have been told.
My Internist picked up on my symptoms right away and put me on Xanax .25 mg. with little success. He then referred me to a Neurologist who started me on Mirapex .125mg and told me to slowly increase until I found the right dosage (up to six pills). I got absolutely no relief and in fact my daytime symptoms got worse. This was especially upsetting to me because of what appears to be the great success you have with this drug in most of your patients.
I am now taking Klonopin 1 mg. at bedtime and find this works very well about 7 out of 10 nights (I keep a sleep diary). I recently had a vasectomy for which I was prescribed hydrocodone. Because of the drug interaction problems I did not take the Klonopin for about four nights while on the hydrocodone. I found the hydrocodone to work amazingly well for both what it was prescribed for and my leg pain and the urge to move. (I do not have PLMS). I took 5 mg. and it worked the whole night with much, much less daytime drowsiness.
I appear to have stumbled onto an effective regimen to control my symptoms but I am extremely concerned about your comments on Klonopin being highly addictive, not to mention the obvious problem with the hydrocodone. I certainly do not feel any addictive symptoms with the Klonopin (I have been using it four 5 months now, never altering the prescribed dosage). Would it be a viable treatment to switch to Hydrocodone instead of the Klonopin to see of I can get relief most all the time without the morning drowsiness? Is hydrocodone as dangerous as Klonopin? It seems to have much less side effects than the Klonopin. Also, how do I approach this subject with my Neurologist without making it appear as though I am just looking for narcotics? Do you have any other treatment suggestions? Both of these drugs have been a God send to me as I have now been able to get a decent nights sleep (most of the time) for the first time in about 15 years. Any suggestions and opinions will be greatly appreciated.
Sedatives can be as addictive as narcotics, but this is quite variable and really depends on the personal response of each patient. In general, the narcotics have more addictive potential. If you take regular drug holidays (at least 2 days off the drug every 2 weeks), the chances of addiction are much reduced. Ultram (a synthetic pain killer unrelated to narcotics) can be used instead of narcotics (hydrocodone) or even alternated with the narcotics.
Even after several months of Klonopin without obvious addiction does not insure that addiction/tolerance may not occur in the future.
Permax may work when Mirapex is not effective, so that may be an additional alternative to try.
Sent: Tuesday, February 01, 2000 9:19 PM
Subject: Advice on Mirapex
I'm in need of some advice. Mirapex is working like a charm at bedtime. I take .125 mg along with my 7.5 mg of Hydrocodone. I sleep very well. First time in years and years. I would like to take the Mirapex at 6pm as my neurologist suggested, but I find if I take any more than .125 mg (more actually gets rid of my symptoms, as one tablet just dulls them a little). I hit this extremely sleepy "wall" for about an hour. My brain feels like mush and my eyelids weigh a ton! Then it subsides.
Am I doing something wrong? Should I have something great from you to suggest to my neurologist when I see her next week for an EMG?
I guess I just want to explore all avenues with this. Thanks for all your good work,
Mirapex has recently been shown to cause drowsiness at doses of 1.5 mg, but that is much higher than the dose that you are taking. This of course does not mean that you may be more sensitive than most people and are experiencing drowsiness at very low doses.
It might be helpful to change to Requip and see if it does the same positive effects on RLS without the sleepiness problems.
Sent: Wednesday, February 02, 2000 1:30 PM
Subject: Daytime Leg Jerks
Should the leg jerks I have in the daytime be PLMD manifesting itself when I'm awake rather than when sleeping. Or is PLMD only during sleep? Usually I am having an episode of RLS at the same time so have assumed they go together. I can feel a "ball of energy" building up inside my leg and then it's almost like an explosion which results in a visible leg jerk. Sometimes my leg also sort of "gives way". This can happen when I am walking -- and often occurs when I am standing on the risers at a Sweet Adeline rehearsal. Am I experiencing PLMD or does it sound like something I need to talk to a doctor about?
Thanks as always for your help.
PLMD can occur during the daytime. There is no sensation associated with these PLM's which generally occur at rest in groups of several over minutes. Your leg jerking sounds like a response to your RLS. It does not sound serious.
Sent: Thursday, February 02, 2012 7:24 PM
Subject: Vitamin B6, sclerotherapy and Varicose Veins with RLS
What a joy to find a web site with so much information! Thank you for such a service. I am quite interested in all the drugs and treatments. I am beginning to wonder if my FMS developed more from RLS than hormonal mechanisms and stresses.
Just for the record, I am wondering how often varicose veins are implicated in RLS. I have noticed a definite correlation with the severity of my RLS symptoms and other activities which would also aggravate varicose veins (such as long distance car trips, a lot of time on my feet and conversely, a lot of time sitting.)
Also for the record, I have found vitamin B6 to relieve actual nighttime aching, although it is not as effective for leg movements.
I have made an appointment with a surgeon for sclerotherapy for my varicose veins. While I had wondered if that might be a possible help, finding your site with the information from the Surgical Dermatology journal of April 1995, convinced me to give it a try.
Is there any more recent research information available about this correlation?
Thank you again.
The activities that you have listed which aggravate varicose veins are the common activities which cause worsening of RLS in patients with no varicose vein problems. Although there is one study that showed benefit from sclerotherapy, no studies have since confirmed these results.
If you are doing this surgery just for RLS, then you may want to reconsider. The RLS medication treatments are very good now and should be tried before resorting to surgery.
Sent: Friday, February 04, 2000 10:02 AM
Subject: RLS and acupuncture?
Is there any research or clear evidence that acupuncture can help RLS? Would the medical opinion be that any effects resulting are likely to be more psychological than not?
There is no research about acupuncture and RLS, but we have had many anecdotal reports that RLS has helped RLS sufferers. Usually this relief is somewhat temporary, but some have achieved long lasting help. We do not know how acupuncture works in general pain relief, so it is impossible to guess how it works to help RLS.
Sent: Sunday, February 06, 2000 9:44 PM
Subject: Bonnie Pruden's Myotherapy for RLS
I have severe RLS and Bonnie Pruden's Myotherapy has saved the night for me. RLS I have discovered does not originate in the calf where it appears to be. that's why no amount of banging on your calves will relieve the symptoms. The problem is actually stemming from the inside muscle starting at the top of the leg where the leg meets the body and goes down to the knee. Have your partner or someone take their elbow [ with you lying on your stomach ]and start pressing at about two inch intervals from the top inside of your leg to the knee. If it kills to the point of wanting to scream you'll know it's working and you're going to get some sleep. After a few minutes you should be asleep.
It really works. Good luck,
Gary M. I.
Sent: Monday, February 07, 2000 10:37 AM
Subject: Lower Back
I've just gotten back from a visit to my neurologist. The MRI showed a narrowing of the lower spine to about 1/2 of what it should be and there are some bulging discs. In your experience, would this have anything to do with worsening of RLS symptoms? I also have numbness on the outsides of my legs from the knees down.
The neurologist did a nerve conduction test and stuck needles in the leg muscles. (ouch! to both)
I was given a prescription for Ultram so I can take a drug holiday (for two days every two weeks) from the 7.5mg of Hydrocodone that I take at bedtime. The Mirapex helps at night also.
Thanks for your advice,
There is no known relationship between bulging discs in the spine and RLS. It is quite common to have RLS worsen after surgery for bulging discs, but otherwise there is no real link between to two problems that I know.
Sent: Tuesday, February 08, 2000 4:09 PM
Subject: St. John's Wort & RLS
The S. California Restless Leg Support Group web site has been a blessing. Thank you. I began RLS a month ago while taking Zoloft. Although I cannot say with certainty the Zoloft was the prime or only cause triggering the nightly RLS, I gradually gave up Zoloft but so far no improvement.
I am under considerable stress, which of course may also be contributing. I have now begun taking St. John's Wort, approximately 300 mg 3 times per day, but have yet to experience any effects (have only been taking for 3 days). Have there been any further reports of positive of negative effects of this herbal drug for RLS. I have read the letter in your files from 97-07-25, which gives me hope. I am also taking "Sonata" to help me sleep.
Medical doctors here are not very helpful with respect to RLS, so any feed back will be greatly appreciated. (Had I stayed in San Diego, where I lived until a few years ago, I would at least be able to have SC RLS Support Group close by!)
Thank you, Sincerely,
Robert Marc F.,
Zoloft (and other SSRI anti-depressants) commonly can worsen RLS. Usually, the RLS gets better off the offending drug, but it can continue even off it (but usually not as bad). We have gotten reports that St. John's Wort may help RLS, but only in a few anecdotal cases. It may take a few weeks to work, so let us know. Mirapex works in most RLS cases, so see if you can get this drug prescribed for you by your own doctor.
Sent: Tuesday, February 08, 2000 5:28 PM
Subject: I kick at night
I am 42 y/o male on active duty in the military. I run often -- every other day for about six miles. I'm in excellent health -- except -- my wife says I kick my legs at night. In some rare cases I wake up and catch myself as my leg reaches the 12 inch apex of its forward motion, like I'm kicking a field goal straight through the uprights.
However in almost every case I don't wake up -- my poor wife does. In general I have no discomfort, tingling, or similar sensations, and; no kicking problems during the day. Although my primary care doctor wasn't quite sure what to make of my "problem" -- night leg jerking/kicking and the resulting insomnia of my wife and mine, does it appear to you that I have a case of PLMD? It sure seems to me.
Thanks to some free outside advice, I convinced the primary care doctor to refer me to a neurologist; in the mean time, to hold me over until this appt, the doctor prescribed Halcion a half - to whole tab before bedtime. I just started taking it so the verdict is not yet out on results/effects. Any comments and/or insights? Many thanks.
This website has been a great resource for someone like me, who just recently got married and who now has someone to observe and tell me for the first time about this little-known problem affecting my -- and her -- ability to get decent sleep. Who knows how long I've had this problem!?
It sounds like you have PLMD. If you are not sleepy during the daytime, then the PLMD's are not disturbing your sleep, but only your wife's sleep. The best solution for this problem is not medication, but rather to get twin beds and move them a little apart when finally going to sleep. This should give you plenty of room to kick your legs at night, but not disturb your wife.
Halcion (and other benzodiazepine sedatives) may reduce the PLM's a little, but the major role for these medications are to prevent arousals from the leg jerks. Thus, this is not a very good medication for your problem.
Mirapex does markedly decrease the PLM's in most cases and would be an answer to your problem, but I still recommend the non-medicinal approach of twin beds.
Sent: Sunday, February 13, 2000 12:54 PM
Subject: Internal thermostat and RLS?
What a rich find and a blessing this site is!
My boyfriend suffers from RLS to the extent we must spend our nights apart. His legs jerk about once every seven seconds. He fears sleeping in new places too, as he gets very little of what he calls "black hole sleep" and feels miserable the next day.
My question is this: Is there some sort of body temperature or "internal thermostat" correlation? He says some nights he can feel himself cooling down, and he will know he will be able to sleep. But cooling showers or getting chilled have no effect. He sleeps with very light covers to avoid overheating. The best he ever slept was during cold fall nights in a pop-up camper a few years back.
His symptoms started - very specifically - about 20 years ago, when the air conditioning in his Florida house went out for a week. He couldn't sleep, got over-heated, felt like he just got used to getting by on rest, not real sleep, and also started some poor sleep habits, which he has since improved.
It it possible for one's "thermostat" to be knocked out of whack? Joel Graedon on The People's Pharmacy once mentioned that for heat stroke, acupuncture was the most useful thing for "resetting the thermostat." He tried this last fall, and got a very little temporary relief (maybe - he isn't sure it was the acupuncture). A return visit this spring yielded no change, but that was only one trip.
Have you ever heard of a temperature component? He's been on many drugs over 20 years and gave them up a few months ago in despair, and noticed no change in sleep one way or another. But now he's ready to ask for Ambien again.
Ambien (or other sedatives) may help decrease the arousals from his PLMD (it does not sound as if he has RLS), but usually does not cause much of a decrease in the actual leg jerks. Mirapex may be a much better choice for the PLMD, but he may need a sleep study to document the amount of arousals he is experiencing from his PLMD.
There is absolutely no real medical information of setting or resetting people's thermostats. Acupuncture may help many people (including RLS/PLMD) and although we are not sure exactly how, we are quite sure that it is not by affecting anyone's internal thermostat.
Sent: Tuesday, February 15, 2000 11:43 AM
I have been reading the letters on RLS and thought I would pass along some information. I am 59 years old and have had RLS symptoms since I was 4 years old. They have increased in severity the past few years to the point that I cannot get a full nights sleep and have problems during the day. The doctor started me on a small dosage of ZanaFlex last week and I have had great results. The RLS is almost totally relieved at night. I wanted to inform others. The doctor did not indicate any complication with using the ZanaFlex, I would appreciate any information that you have on this drug.
ZanaFlex (tizanidine hydrochloride) is a centrally acting (alpha) 2 -adrenergic agonist that is used for muscle spasticity for Multiple Sclerosis patients. This class of drugs help only a small minority of RLS sufferers.
The major problems with ZanaFlex are liver problems (liver enzymes should be monitored regularly) and sedation. If this drug stops working for you, have your doctor consider prescribing Mirapex or Requip.
Sent: Wednesday, February 16, 2000 3:22 AM
Subject: Mepergan: Slipping equivalent micky to RLSers?
I just found out that Mepergan is Demerol with promethazine, a dopamine antagonist. No wonder I have had a few in my group complain of their legs going nuts after surgery when they were given Demerol; I assume they had Mepergan.
Just wanted to check for your opinion if Demerol as long as not combined with some drug that make RLS or PLMD symptoms worse, is okay as far as you know. One of my brood is going in for surgery and scared half way out of her mind as to what they will slip her. I assume as potent narcotic, should quiet RLS symptoms. Right?
Promethazine (Phenergan), an anti-nausea medication, like all the "zines" almost always cause marked worsening of RLS. There is no reason to take the promethazine with the Demerol unless the person gets nausea from the Demerol. It is difficult to be sure if the Demerol will 100% counteract the negative effects of the promethazine. It depends on the dose and the person's reaction to both drugs.
Sent: Monday, February 14, 2000 10:43 PM
Subject: Thank you
My name is Jennifer and I'm not crazy! Thanks to your web site.
I am only 23 and I am almost positive that I have RLS. As long as I could remember I would have to get up and stretch my calves especially when I would be watching a movie I rented. It felt like my legs were so tight that it hurt to squeeze them. After quitting a physical examination job I noticed that my creepy crawlers got worse and for about a period of a week my left calf was keeping me awake.
I couldn't stand it anymore. I tried everything even wrapping it with an ace bandage. Of course my family thought I was nuts. I finally went to the doctor and he said take vitamins and eat bananas. Well, that didn't work and I didn't like the doctor so I never went back for a recheck. Now that I have access to the web I have been researching RLS, all I could do is cry. People understand and I know that they feel this too. Thank you. Any help or information will be greatly appreciated. I have a great concern, as I reading things, it says it gets worse with age and during pregnancy.
I am 23 and hopefully have a long way to go and I plan on having kids someday. I can't even imagine this getting worse. Is there any way to prevent it from getting worse or things I can do to relieve the creepies? Since I am unemployed at the moment I noticed that if I stay awake until 2-2:30 and sleep until noon I could fall asleep better and they stay away during the day.
RLS does have a circadian (daily) pattern. It tends to get worse in the evening and peaking at about bedtime. It then eases off in the early morning. It is not unusual for RLS sufferers who have no access to medical treatment (and no job constraints) to go to sleep at 3-6 am and sleep until the late morning.
We have a list of non-medication treatments on our site, but these do not seem to work on most RLS sufferers and are much less effective in moderate to severe cases. Medication is currently the best therapy for RLS, but you need to see a physician who can prescribe them for you.
Sent: Thursday, February 17, 2000 7:16 AM
Subject: Ultram durg holidays.
I have been taking 2 Ultram since June and I find it to be effective. However, my drug holidays are a horror with the result that the 2 days off the Ultram leave me totally exhausted and depressed. I am beginning to consider skipping the holidays. What's so good about the Ultram, is that if I can't sleep at least my legs are generally comfortable. There is usually no pain, and my legs are comfortable. When I awake in the morning my body is relaxed.
What ingredient in the Ultram does this for me? I have taken Percodan, trazadone, Tylenol with codeine or Ambien on the two nights of the holiday with bad results.Do you have an further suggestions?
Again many, many thanks for all the help you have given me,
The reason for taking drug holidays is to avoid addiction/tolerance of the Ultram. If you are having so much trouble with the drug holidays, then try taking them less frequently, such as once a month or so. There is no guarantee that the less frequent drug holidays will prevent addiction, but it is likely that using Ultram at a dose that is just enough to control your RLS symptoms will avoid that problem.
I have no explanation why Ultram works so well in you. This is common in only about 20% of RLS patients who take Ultram. Most RLS sufferers find that Ultram is similar to the narcotics or actually less potent than the narcotics. It is difficult to explain why there is so much variation, but that is typical of this disease.
Sent: Friday, February 18, 2000 5:56 PM
Subject: Mirapex and Neurontin
I have a severe case of RLS and PLM. I have been on most of the medications available at one time or another. My neurologist gave up on me after 10 years. He sent me to a sleep clinic.
I currently take:
Mirapex .125mg at 7 and 9 P.M.
Neurontin 300mg, 1 at 4 P.M. and 3 at 9 P.M.
I have been told to increase the Mirapex to a maximum of four .125 mg/day and the Neurontin to a maximum of seven 300 mg/day. However, I would like to know a recommendation for the best times and doses.
Most RLS sufferers use about 800-900 mg of Neurontin per day. This can be taken in divided doses depending on the timing of your RLS symptoms. Seven of the Neurontin 300 mg tablets (total of 2100 mg/day) would be a very high dose.
The average range of Mirapex is 2-6 of the .125 mg tablets per day. Severe cases may need up to 10-15 tablets per day. We find that Mirapex tends to be more effective (at least in most RLS sufferers) and should be increased before increasing Neurontin to very high levels. Again, take the Mirapex 30-60 minutes before your RLS symptoms bother you (up to 3 times per day) and work up to the smallest dose that does the job within the above guidelines.
Sent: Friday, February 18, 2000 10:44 PM
Subject: Ultram and how does Mirapex work?
As in the above letter from Sue, I too have great results with Ultram. I use it for my drug holiday and actually look forward to those two days. I can't take Ultram every day. It seems to build up in my system and I can't stay awake.
I have a question about Mirapex. What exactly does it do? I know it works as a dopamine agonist. Does that mean it gets the dopamine into action or does it slow the dopamine down? I know that Parkinson's disease patients take a much higher dose, so I'm thinking it increases the dopamine. Am I right?
Mirapex is a dopamine agonist which means it acts like dopamine and works on the dopamine receptors. Parkinson's disease patients have decreased dopamine in the brain and therefore require high doses of dopamine like medications. RLS patients do not have any similar lack of dopamine in the brain which is probably why it takes only small doses of dopamine to help RLS sufferers.
How or why dopamine medications help RLS sufferers is not understood at all. It has been found that many RLS sufferers have decreased ferritin/iron levels and iron is needed in making dopamine. Adding iron to these patients often (but not always) helps RLS, and that may be acting through the dopamine system. Other than this information, very little is known or understood about dopamine and RLS.
Sent: Saturday, February 19, 2000 9:15 AM
Subject: RLS in my toes.
I have been told I have RLS. I have had this problem for years. It is worse at night. It does not affect my legs but only my toes and the area directly behind them. This area feels like it is swelled and becomes numb. Also the sensation is in my arms and hands at times and I experience involuntary jerks. It is a horrible sensation. It goes away after a while after I standup.
I can't even sleep in my own bed with my wife. Needless to say this causes marital problems. We cannot go out and stay in a motel because I am up all night pacing the floor. If we go to a movie it starts when I am setting relaxed during the movie. I would like to know what makes my toes and the area directly behind them feel this way.
RLS is a very puzzling disease with a wide variation in symptoms and limbs affected. There is no explanation available to figure out why you are affected in the toes and in the area behind them. The good news is that there are lots of good medications (Requip, Mirapex, Permax) that can safely relieve your RLS symptoms and let you live a normal life, including sleeping with your wife.
Sent: Saturday, February 19, 2000 4:26 PM
I have just discovered RLS. It seems this is what I have been suffering from since I was a little girl, they called it growing pains. I had all kinds of treatments and brain scans and the such when I was young. I went to the neurologist last week and he mentioned this to me to try and help my legs and feet that seem to always ache and crawl and feel confined. He prescribed Neurontin 300 mg. Plus trazadone 50 mg. I am already taking Plendil and triamterene 25 mg.
I guess what my concern is that I really do not want to take more drugs but my legs hurt so badly that I don't sleep many nights, I try leg rubs, baths and stretching but to avail. I thought I would try non drug treatments first, is there anything you recommend. I thought about St. John's Wort, iron and magnesium treatments. I am afraid to start this drug treatment but I also need to sleep. Could you advice or help me in my fears. I appreciate anything you can recommend.
There are lots of non-prescription treatments for RLS, but most of them only help a minority of sufferers. Many of these treatments are listed on our web site. St. John's Wort has helped a few, but the results have been very inconsistent. Iron therapy may only benefit those patients who have ferritin levels below 45. Magnesium has not really been documented to be of benefit yet.
For RLS symptoms that are moderate to severe, medication is almost a necessity. Neurontin is a good medication, but I prefer to start with Mirapex. It tends to work better with less side effects. Trazadone is an anti-depressant that may or may not help RLS. A better choice would be to add an intermittent dose of a sleeping medication such as Ambien or Xanax. If the prescription medications are taken properly, the concern about long term therapy should be minimal at best.
A Reply from Karen D.
Sent: Monday, February 21, 2000 2:29 PM
Subject: Re: Neurontin and fear of taking RLS medications
Thank you for answering my questions. I still have not started the Neurontin. I am very nervous about it. I almost tried to day but I took it out of my mouth. I just can't seem to bring my self to take it. Do I just ask the doctor for a different medication as you suggested without trying the one he prescribed. I keep hoping to find something else to stop the problem. I was up again last night. My sons think it is psychosomatic but I know it is not.
I am frustrated with the whole issue. I guess the end is that it is my body. I am a teacher and can't not be sleepy at work or unable to cope with the stresses of my job. I did start the St. Johns Wart but to no avail as of yet. Any other ideas? Thank you for your time in answering my questions.
The condition is definitely not psychosomatic. You will have to use prescription medication sooner or later, so just prepare yourself. You should have to reservations about speaking to your doctor about which medications you prefer. If you do not have this type of relationship with your doctor, then you may not have the right doctor. This is even more appropriate for a disorder such as RLS with which most doctors, even neurologists, do not have that much experience.
My best suggestion is still the Mirapex. We have had so much success with this class of medication that ii is a shame to deny yourself this amazing treatment. You will sleep better and function normally during the daytime.
Sent: Saturday, February 19, 2000 6:12 PM
Subject: Dose of Mirapex?
Do you have any information on patients that are currently using Mirapex for their RLS? I have been taking .25 mg. for a couple months now. Initially, it seemed to help, but now I find myself pacing the floor at night just like the old days. I'm reluctant to increase the dosage on my own, and I don't really like the neurologist I've been seeing. I get a feeling of indifference and lack of concern from her on my condition. She suggested that I might be suffering from neuropathy and not RLS.
From everything I've read on the subject, I'm convinced that it can only be RLS. Are there other disorders or maladies which mimic the symptoms of RLS? Also, do you find that this sleeping disorder affects mostly people in their golden years? What age groups are affected the most? I just turned 40 in December and I don't look forward to the prospect of dealing with this for another 30 or 40 years.
Mirapex can be increased to about 1.5 mg per day, but the average RLS sufferer needs about .25 -.75 mg per day. You should not increase your dose of Mirapex without the supervision of a physician. Some people (about 15%) get tolerance to Mirapex and then other strategies have to be employed (we have lots). Unfortunately, most neurologists do not have much knowledge about RLS or its treatment, although they do have familiarity with the RLS medications as they are used in different doses (and ways) for many neurological disorders. For difficult cases of RLS, most often a specialist with experience in this disorder is necessary to get proper treatment.
There are a few medical disorders than are a little similar to RLS, but only RLS worsens in the evening, comes with rest and is associated with an urge to move the affected limbs and is in turn relieved (at least temporarily) by movement. RLS onsets in the first few decades of life, but it does tend to continue and actually get worse with time. Luckily, there are now many good therapies to take care of the awful RLS symptoms, so you should not have to suffer for the next 30-40 years.
Sent: Monday, February 21, 2000 7:22 PM
I have been taking Mirapex .125mg once a day usually around 3 to 7 PM. for quite some time. I am very concerned because the restlessness has started occurring later in the evening and I have to take another dose. Am I getting used to the medication or is the RLS getting worse?
Thank you for any comments or advice you may have.
It is difficult to say whether or not your RLS is getting worse. Normally, Mirapex is taken before bed, and an additional dose is only added when the RLS gets worse and starts occurring earlier in the evening. Generally, RLS is worse at bedtime, but your case is obviously different.
There are two possibilities. The first is that your RLS is getting worse and thus occurring at a different time than usual. The other possibility is that you are getting tolerant to Mirapex and even possibly having some rebound. The way to differentiate the two alternatives is to have your doctor increase Mirapex to either 2 tablets at 3-7 P.M. or by adding another tablet as you have already done later in the evening.
If that solves the problem and there is no worsening in the subsequent few months, then the problem was more likely that your RLS got worse. If you start needing more and more Mirapex, then perhaps you were getting tolerant to the medication. Only 15% percent of RLS patients who use Mirapex will get tolerant/have rebound, but it is much less likely at low doses such as you are using. My best bet is that something is making your RLS worse (other medication such as an antihistamine??) or that the RLS is just getting worse on its own.
Sent: Wednesday, February 23, 2000 5:21 AM
Subject: Mirapex and Insomnia
I have PLMD only and am currently taking clonazepam and Neurontin at bedtime. I know you recommend Mirapex above all other medications for this condition, however I have tried Mirapex and although I think I did go into a deep sleep with it, I never slept more than 1 hr. at a time while taking it.
After reading your letters here, I noticed you mention that the side affects will disappear after a few weeks. My problem is that I need something to help me sleep while I am waiting out the side effects. What would be your suggestion? I find I can not stop taking the clonazepam.
Thanks for your reply,
I prefer Mirapex generally, because it works for more RLS patients than the other medications. If you are doing well with your current medications, then there may be no reason to change.
The fact that you do not sleep without Klonopin (clonazepam) may indicate that you are somewhat addicted to this medication. If that is the case, then changing to a shorter acting sleeping pill (Xanax or Ambien) and taking regular drug holidays would be beneficial.
If you do use Mirapex in the future, you may need a larger dose to keep you asleep thoughout the night.
Sent: Wednesday, February 23, 2000 6:39 PM
My name is Kim and I am 38 years old. As long as I can remember I have had periods of leg distress at night. The aching and "crawling" feelings radiating up from my ankles to my calves is unbearable. I am not aware of any jerking or kicking in my sleep, but many mornings I awake feeling exhausted. It seems that my left leg aches worse than my right, but most of the time it occurs in both legs. All I can do is continually twist my ankles, stretching my calves, until it gets to the point that I have to get up and move around. Some relief is gained with a hot bath. Many nights I have taken 4 or 5 extremely hot baths and tried to immediately go to sleep. If I can fall asleep while my body is cooling down from the bath, I can get some sleep. Sometimes the hot baths work, but some nights I cannot sleep until around 4:00 a.m., only to get up for work in a few hours.
Earlier this week I had an allergic reaction to something and my physician prescribed a steroid dose pack, an antibiotic, and an antihistamine for some annoying drainage. The first night I took the medication was the worst night I think I have ever had with my legs. I didn't even get 2 hours of sleep. I contacted my doctor and he said the steroids should have helped any leg pains and wants to see me to do a sedimentation rate this week.
My mother and brother suffer from the same problems, except my brother also has the pains in his arms and wrists. Additionally, my father and several uncles suffer from Parkinson's disease. Is this similar to RLS as I expect? Is there any relation to Parkinson's disease? Any help you could provide would be greatly appreciated.
Your description is classic of RLS (including your family history). The antihistamine that your doctor makes RLS gets markedly worse, which explains why you had such a bad night. Steroids do not help RLS/PLMD. Unfortunately, most doctors know very little about RLS, so they very often miss the diagnosis and use the wrong drugs to treat this condition. A sedimentation rate offers nothing for your condition (this is a non-specific test that doctors order when they are not sure what is going on and are looking to see if there are serious problems that they may be missing).
You may want to make a copy of our RLS Treatment Page and give it to your doctor. If he can't help you, then get a referral to a sleep specialist. Mirapex currently is the best medication for your problems.
There is no known relationship between RLS and Parkinson's disease other than they use dopamine like drugs for treatments (but at roughly ten time higher doses for Parkinson's disease).
Sent: Thursday, February 24, 2000 12:48 PM
Subject: Interchanging drugs
For the last 18 months, I have been successfully treated for RLS by daily alternation of Sinemet CR and Neurontin. The only augmentation problems I've experienced have been when, for whatever reason, I've stayed on Sinemet alone for at least a week. Now I'm contemplating adding Mirapex to menu as well, largely based on what I've read here. So, I have a couple of questions: Are three separate drugs too many? I'm hesitant to drop either that I'm currently taking due to the effectiveness thus far.
Should Mirapex be taken on the same routine as the other two - which for me is at 7:00 and 11:00 p.m.? (One 25/100 Sinemet or one 300mg Neurontin each time). The Mirapex samples I have are (I believe) .125, so would I take one of these in place of either of the others?
By the way, I want to again thank you for your great assistance over these last 18 months. Not only have I benefited greatly from it, my personal physician is very interested in learning as much as she can about RLS, and has even called me when she's had a patient come in to describe these "weird feelings in my legs", etc.
Thanks very much.
As you can probably tell from reading my web site, I am not fond of Sinemet. If there is even a hint of augmentation or rebound, the drug should be replaced with a dopamine agonist (Mirapex, Requip or Permax). My advice would be to change the Sinemet to Mirapex .125 mg. at 7 and 11 p.m. If you need more, you can increase by 1/2 or one Mirapex tablet every week until you are at the lowest dose that relieves your RLS symptoms.
You can continue with the Neurontin, but with the correct dose of Mirapex, you may not even need the Neurontin.
Sent: Sunday, February 27, 2000 8:14 AM
Subject: Klonopin and Mirapex.
I have had restless legs for 13 years but was diagnosed only last year. I am on a combination of Mirapex (.50 at night) and Klonopin as needed (usually 1-3 mgs). Most often I need 1.5 mg a night as the Mirapex alone does not work. I have read that you prefer Ambien and Xanax to Klonopin. Would this work in combination with Mirapex? How high a dose of Mirapex can one safely go to? I am sleeping better than ever in the last 13 years on the drug combination but still wake 4-5 times a night.
My second question is that I have severe dry eyes which are so bad that I can not read nor focus for very long without the burning pain becoming intolerable. I have seen several eye doctors who see no cause for this condition and other than taking drops once an hour can offer no help. It seems to me that the eye condition gets worse when my restless legs is bad, either day or night. Is there any known correlation between restless legs and eye problems?
The average RLS patient needs between .25 mg and .75 mg of Mirapex per day. We have had patients go up to 1.5 to 2.0 mg per day (or higher) for very severe RLS. If your current dose of Mirapex (.5 mg) takes care of all your RLS complaints, but you still have trouble sleeping for other reasons, then there would be no reason to consider an increase in dosage, as that will not help you fall asleep any better. Unless you have PLMD also, then Mirapex has no role in keeping you asleep.
If your RLS is still bothering you at bedtime and is preventing you from sleeping, then you should increase the dose until the RLS is not a significant factor in preventing sleep. If your RLS is not a factor at bedtime, but you can't sleep anyway, consider using Xanax or Ambien on a very intermittent, infrequent basis instead of Klonopin. We often use Xanax or Ambien with Mirapex.
There is no known relationship between your eye problem and RLS.
Sent: Sunday, February 27, 2000 7:35 PM
I have a question re the maximum dosage of Klonopin a person can take without becoming addicted. The background is this: our Portland (OR) RLS Support Group has developed the survey -- a copy of which I sent you several months ago. We have now received 75 replies, which is excellent, and which are showing some rather interesting facts. Today I took the time to review those forms for people taking Klonopin. 10 of the 75 are taking this route and only two of the ten are unhappy with the results (both of them are in their 80s and are taking other drugs as well).
The fact that the 8 are happy with the results brings up the strong possibility that they are in fact staying below the level that would bring on addiction, as seems to be common with some drugs. All seem to be below 2mg per day, most in the 0.5 level, and I can't really gain further insight with such a small number.
Can you suggest a level beyond which most should not go? You have touched on this before, saying that there are many patients who we in support groups never hear from, who are taking low doses of known addictive drugs, without any real problems, for years. Your further advice on Klonopin will be valuable.
As an aside, it is frustrating to those of us who try to monitor various Internet sources, that so many folks refer only to the drug they are taking without saying how much they are taking, whether it is every day, when taken, etc. So much more could be learned, and advice given, if only there were more details. Incidentally, your respondents are far better at being specific that many of the other sources. Thanks to them!
The difficulty of answering your question is due to the incredible individual variation of people's reaction to drugs. A small dose can cause addiction in one patient, while a large dose may be well tolerated without addiction in another. We do know that this is likely due to genetic factors that cause a person's enzyme systems to act differently and result in addiction.
People who genetically are low addictive type of individuals will likely get away with small doses of Klonopin (in the 0.5-1 mg range) on a daily basis without problems. As the dose goes up, the odds of getting addicted obviously goes proportionally higher. This probably represents a minority of RLS sufferers, my guess is about 20-30% at most. For the rest, a small dose of Klonopin taken on a daily basis will soon lead to addiction/tolerance.
Higher doses of short acting drugs (not Klonopin) can taken on an intermittent basis without much risk of tolerance/addiction. That is why I like these shorter acting drugs better. I have found little problem with my patient's getting addicted to these shorter acting medications (Ambien, Xanax) when they take them on an intermittent basis or at least with frequent, regular drug holidays (especially compared to Klonopin).
Sent: Monday, February 28, 2000 11:34 AM
Subject: Catapres (clondine) patches for RLS?
I noticed your mention the use of Catapres (clonidine HCL) in management of RLS. In addition to the tablets, it is available as a patch. However, your site does not refer to the patch. Is there any info on the patch vs. tablet efficacy?
The information on the use of Catapress is only from one article. The success of this drug has been somewhat limited and our knowledge base is also limited. The patch might work just as well as the pills for RLS, but only trial and error will tell.
We will post this and see if anyone has tried the patches for RLS (as apposed to blood pressure treatment).
Sent: Monday, February 28, 2000 1:38 PM
I have PLMD. I have tried Sinemet (augmentation) and Permax which made me very ill. I started 1 pill of .125mg of Mirapex Thursday evening 1/2 hr. before bed. I have not gotten any bad side effects other than waking up about 20 times a night, every night that I have been on it. Is this a side effect from Mirapex? I have read it can cause insomnia. If it is will it go away? Should I try taken the dose earlier in the evening?
My doctor wants me to stay at this dose until Wednesday, or Thusday to see what happens. Also, can I still take a supplement that contains Valerian Root and Kava,Kava? OR is this unnecessary.
People have had side effects of both insomnia and sleepiness from Mirapex. It does seem strange that two such diametrically opposed reactions can occur from the same drug, but this just helps to illustrate how poorly we understand the effects of many (probably most) drugs. I have seen patients increase the dose (in your case from one to tablets) and the insomnia may go away. If however, it gets worse, then discontinue using the drug and consider another medication (Requip or Neurontin).
Valerian root and Kava Kava have helped a minority of RLS sufferers. If you find that they help you then there is likely no reason that they cannot be added to your prescription medications. We do not know the interactions of these over the counter remedies, so it is impossible to say that they will not cause problems with your usual medications.
Sent: Monday, February 28, 2000 8:18 PM
Subject: Re: RLS & sleep specialist
I just had my first consultation with anyone other than my PCP. First let me tell you my PCP has prescribed for RLS: Ativan, Klonopin (made me very groggy the next day) Permax (extreme nausea), & Ambien, Xanax (had adverse reaction and kept me very alert all night long). Obviously I didn't continue any of these medications and was then put on 600 mg Neurontin taken at 8 PM. I am taking no other meds at this time. I am having great success with Neurontin although I wake up at 3 or 4 AM with mild to moderate RLS breakthrough. Sometimes I can get back to sleep, sometimes not. Should my PCP up the amount of Neurontin?
OK, back to the original reason I was writing (my apologies for getting off track.)
After asking me a series of questions the sleep specialist, he said three things that seemed to send up red flags that maybe he doesn't have much experience in dealing with RLS:
1) He didn't understand why I wasn't given a Rx for Sinemet and said that it was the first medication I should have been given. [I know that you and other experts in the field say this medication is outdated]
2) I mentioned to him that my 8 year old daughter has RLS (she has described it to me) and PLMS (I have watched her kick in her sleep every 30-40 seconds) But he said children don't have sleep disorders....sleep problems arise in adolescents and adults only. (Yet my child clearly has one)
3) He stated RLS and PLMS are not known to be the cause of sleepiness during the day ( I would think if one gets only 3 hours sleep a night that they would be extremely sleepy the next day?!!)
Should I be concerned about his knowledge regarding this matter and perhaps seek another specialist??
After all the questions he said he was going to schedule an overnight sleep test (my first) as well as the MSLT the day after. He said he wants to check something but didn't tell me what...I do think I have something else going on as well RLS and PLMS so I am grateful for the tests. But, he said it was ok to take the Neurontin the night of the test as it would not effect the results. I have not been diagnosed w/ PLMS but know that I do have it and I want to know how serious it is. I heard that Neurontin decreases PLMS. Wouldn't this skew the test results??
Sorry for the rambling....I guess I just want to know based on the info he gave me regarding RLS and PLMD (incorrect info I believe) should I trust his judgement in diagnosing and treating another sleep disorder I may have? What would you do? Thank you for your valuable time and knowledge!! Your previous responses to posts and the information you provide to many of us keep me from being helpless and ignorant regarding this disorder. Much appreciated!
For the 10 years that I was a sleep specialist, but not involved with RLS, my knowledge of RLS was very limited. This is most often the case with the majority of sleep specialists who do not subspecialize in RLS. Still, most should know enough about RLS to treat it reasonably well. I will give you the correct answers, but I think that you must have misunderstood some of your specialist's responses. First, to answer your 3 main questions:
1) Sinemet is still in the textbooks as the drug of choice for RLS, and unless you are familiar with the current RLS literature, you would make the mistake of recommending it (this is a very common mistake even amongst sleep specialists).
2) Studies have shown that at least 25% of RLS sufferers have the onset of their symptoms at age 10 or under. My experience is similar, with probably even a higher percentage tracing it back to early childhood.
3) RLS is a will known cause of insomnia and thus a cause of daytime sleepiness (even in the older textbooks). PLMD does not cause daytime sleepiness unless the leg jerks cause arousals (much less usual, but still common enough).
A sleep study is not needed for RLS. The only reason to get a sleep study is look for a cause of excessive daytime sleepiness that can not be readily explained by your sleep loss from RLS (if you still have significant daytime on Neurontin after a night of sleeping well, that is no insomnia). Otherwise the odds of finding something useful on the sleep study is nil. The MSLT is a tool to assess the level of daytime sleepiness and look for other causes of this sleepiness such as narcolepsy. We often do sleep studies on maintenance medications (such as Neurontin) since if no PLM arousals are noted while on your medication, then the problem is solved and who cares if you have PLM's with arousals off the medication?
To treat your early morning (3-4 a.m.) RLS, increasing Neurontin is a reasonable choice. My preference (note that this is my personal bias and other RLS specialists may have other preferences) is to add Mirapex or Requip at low dose. I find that these drugs are more effective in a larger percentage of RLS sufferers and generally have less side effects.
In general, seeing a sleep specialist who specializes in RLS will usually result in more appropriate RLS therapy that will more quickly result in relief of your RLS symptoms with less side effects.
A Reply from Stacie
Sent: Tuesday, February 29, 2000 10:44 AM
Subject: Re: RLS & sleep specialist
I can understand what you are saying. Question: I do wake up 5-6 times a night (RLS only wakes me up at 3or 4AM). I don't know why I wake up but if it were from PLM's would I be aware that leg jerks were the cause?
The answer to your question about waking up from PLM's has a few answers. PLM's cause arousals, which are defined as stage changes in sleep. Most often the stage change is from stage 3 and 4 deep sleep to stage 2 or 1 sleep or more commonly from stage 2 sleep (the most common stage of sleep which is restorative) to stage 1 sleep (non-restorative sleep). It is also possible to get awakenings from stage 1 or 2 (another type of arousal).
People who have lots of arousals (especially to stage 1 sleep) tend to be sleep deprived and will be excessively sleepy during the daytime (despite the fact that they may deny it and just think that they are good sleepers as they can fall asleep easily, albeit too easily). When these patients get arousals that cause them to wake up, the wake time is generally very brief (a few seconds) and the person never remembers this arousal.
If there are only a few arousals from PLM's then an awakening that keeps the patient up may result as the person is not sleepy enough (i.e. not sleep deprived enough) to fall back asleep right away. Sometimes the leg jerks can be vigorous enough that you might be aware of it while waking up (especially if you were just in stage 1 twilight sleep), but it can be missed and you would have no idea what woke you up.
Only a sleep study can assess the PLM problem and arousals from PLMD. Most often we can tell whether or not a sleep study is necessary based on the patient's complaints and observations. Over 98% of sleep studies on PLMD patients are done for the patients who have excessive daytime sleepiness. Sleep studies rarely yield additional information on the other 2% of patients who are not excessively sleepy and even much less commonly does the study result in a change in the medical treatment of the patient (which is why it is not done often).
Sent: Tuesday, February 29, 2000 9:35 AM
Subject: Drug holidays for Ultram.
I am taking Ultram and Mirapex for RLS, I take 6 of the .125 Mirapex a day, and 4 to 6 Ultram a day. The Mirapex is helping me to sleep at night but I am still in pain during the day, so I take the Ultram. My concern is that I am building a tolerance to the Ultram. I tried taking a holiday away from it but found the pain to much to take. I couldn't take it for more than about 7 hours, so back to the Ultram.
I am seeing my doctor in a couple of days can you suggest some thing to take for these drug holidays? He gave me Vioxx last time to try and it did nothing.
Several RLS patients have had success with anti-inflammatory medication (Vioxx, Motrin, etc.), but the vast majority find that this class of medication does nothing for their RLS complaints. The narcotics (codeine, Vicodin, Darvocet, etc.) are often used for drug holidays from Ultram. Some even alternate them every few days.
Sent: Tuesday, February 29, 2000 11:06 AM
Subject: Restless Leg Syndrome
I have found a very simple treatment for this affliction. It may sound TOO simple. I believe the cause of RLS is dehydration and when it starts, I get up and have a glass or water. Within 15 minutes, I can feel a tingle in my feet, and the twitching is gone. I have tested this for over a year, and have been helped EVERY time. It also is effective for air travel. RLS used to drive me crazy when traveling, especially long trips.
Thank you for your RLS treatment. I suspect it may help only a minority of RLS sufferers (which is the case for almost all the remedies sent to us by RLS sufferers that helped them). We will post this information and I am sure that it will help some of our readers.
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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