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Sent: Thursday, June 02, 2000 9:11 PM
Subject: "I need a new drug"
I have had RLS and PLMD since I was a child about 30 years ago. I had a period from my late teens to early twenties during which I was mostly symptom free, but since then have been riding the "zombie roller coaster". I was diagnosed after a sleep study 10 years ago and was on Sinemet for a couple years with limited results. I also have been on Sinemet CR, and Klonopin, none of which was very helpful. I had some success with Permax, but the side effects of numbness and sinus congestion became very severe as I was forced to increase the dosage beyond .75 mg.
I have been taking 20 mg of OxyContin for 2.5 months, but am experiencing daytime fatigued it too became much less effective. my attacks are becoming more severe and longer lasting and although the drug takes a bit of the edge off my symptoms, I simply cannot sleep. in the last few weeks I have noticed the following: my attacks are beginning on the left side of my body (leg and arm) and become severe long before the right sides is even noticeable. My limb movement disorder seems to be getting worse as well.
I am getting back in the cycle of little sleep which intensifies each night until my body "crashes" out of sheer exhaustion. in the last two weeks I have had on average less than 3 hours of sleep per night with one well rested night and 5 nights with literally 0 sleep. in the last two nights, I have had about 6.5 hours of sleep each night (an anomaly for me), yet feel extremely tired and am starting to fall asleep while driving. I don't know if this is an effect of the drug, or the disease, but as my doctor says I am at a high dosage of OxyContin, he is unwilling to authorize a higher dosage.
I have tried everything from hot baths (as many as 4 in one night) to herbal teas to meditation and massage. all of these have proven relaxing, but have ultimately failed. I am desperate for any suggestions for new medications, herbal remedies or whatever. is Sonata a good choice? is there anything new I could try?
My neurologist is a bit baffled. he has a few patients with similar histories and the same level of severity, but all have responded well to the OxyContin.I would also like to know what are the long term effects of RLS--for example, can people with RLS expect a shorter life span and are we more prone to strokes and neurological disorders such as Parkinson's disease?
The only long term effects of RLS are those that are related to insomnia and similar to any chronic pain disorder. The major serious long term problem is chronic fatigue and severe depression (which often gets treated with antidepressants which can make the RLS worse). There is no progression to Parkinson's disease, strokes or any other neurological disorders.
You are on a high dose of Oxycontin (although it can go to higher doses if necessary). Often taking a short drug holiday (about a week or 2), while using a non-narcotic substitute such as Ultram, may help re-establish the effect of a lower dose.
If Permax was effective, then it is very likely that Mirapex or Requip will work even better, but not cause the unwanted side effects (they have a different side effect profile, with generally fewer problems. Sonata or Ambien may be reasonable add on choice, if necessary, to fall asleep, but it is very likely that with Mirapex or Requip, you may not even need a sleeping pill.
Sent: Friday, June 02, 2000 8:54 AM
Subject: Restless leg syndrome
I am a twenty five year old woman from Alberta, Canada who has suffered from restless leg syndrome since childhood. It is much worse now than when I was a child. I am astounded at the number of people who suffer from this. I am completely amazed there is even a web site devoted to it. I wasn't expecting to find this much information!!!!
I sympathize with all of you who suffer. It is a very frustrating condition. I had no idea that this leg problem I had even had a name, let alone all the people in the world who share my condition. Thank you very much for your website. Now I can try some of the non-drug therapies. I had no idea there were treatments. I thought it was just me and that I needed more exercise. I am new to the internet and am amazed at the information available to me. It is so fun.
I'd love e-mails from anybody who reads this letter.
We will post your letter on our web page. Welcome to the internet.
Sent: Sunday, June 04, 2000 7:34 PM
Over the past year I have felt as if my neck is drawing to the right side. Over the past few months the feeling has gotten more intense and causes a lot of pain in my head, neck, and shoulder. My neurologist has told me that drawing of the muscles sometimes happens to people with PLM. I also find that I am not able to keep my body still like other people when sitting in a meeting or just sitting. My neurologist says that this also goes along with PLM. Do you have any suggestions or comments and have you ever heard of this?
Thank you for your response!
I am not sure what you mean by your neck drawing to the right side, but if this may be due to some muscle spasm. I do not think this has anything to do with PLMD. The motor restlessness that you are feeling is typical of RLS, which often occurs with PLMD. Treatment with a drug such as Mirapex (taken about 30-60 minutes before symptoms occur) should eliminate the problem.
Sent: Monday, June 05, 2000 10:59 AM Subject: Quinine
Back in May I'd read on your site about Quinine, and decided to check it out beings as how I hadn't used it since it was taken off the over-the-counter meds.Results: Astronomical! Wonderful! 100%! Wow! First solid, good, deep, sleep in YEARS.
I checked with my pharmacists as to why Quinine (the pills were called Q-Legs (Q-Vel??) or something like that) was taken off the market, and he said the only reason the government took quinine off the open market was because they figured it was only good for malaria, and since malaria is no longer an issue, the drug should be taken away. He said if I still got cramps (he didn't know I'm taking it again for RLS, NOT muscle cramps), then I could simply ask my GP for a Rx. OR I could drink plain old tonic water. (His suggestion.) He was right! When my RLS starts up about 8:p.m. or so, I drink 4-6 ounces of Tonic Water (regular or diet), and within 30 minutes the entire, complete, 100% symptoms are GONE. No RLS!!!
Usually I'll wake up around 2-3:am with RLS and have to get up and drink another 2-4 ounces, and within 20-30 minutes I'm off asleep again. I am also taking .25 Xanax each night, and have for years and years. There are two side effects of drinking Tonic Water: (1) are the calories if one is drinking the Regular. The Diet is much easier to drink, flavor-wise, as it's much less sweet, and the aspartame doesn't seem to be as bothersome as it is in some colas. (2) Definitely heartburn. If I take 1/2 Zantac an hour or so before or after the tonic water it lessens the heartburn to zero or nearly zero. If I take the Zantac at the same time as the tonic water, the tonic water doesn't seem to work as well, or as rapidly. That might be incorrect though; I may have just had slow reaction for any reason.
So now it is June 5. I've drank tonic water for RLS since May 1, so that gives a pretty fair assessment. Will it lose its potency as my body gets used to it? Pray not! Please include what you can of this to other sufferers. My Neurontin (at $1. plus per pill) was beginning to either rebound or not to work at all, and Clonazepam was rebounding like crazy. At 68 cents a liter (Albertson's currently has it on sale), and as well as tonic water is working, and to this date no side effects worth mentioning, wow oh wow you can't beat it!
Thanks, especially for your great RLS site!
About 5% or less of RLS patients seem to get relief from quinine. Your case is clearly one of the more dramatic ones. Hopefully, it will keep working for you, but we really have no data on whether tolerance develops or whether it only works for mild RLS and with time as RLS may get worse it then may not help moderate or worse RLS.
If you need help in the future, consider Mirapex or Requip.
Sent: Tuesday, June 06, 2000 6:33 AM
I'm sorry to be a bother, but I have a couple more questions. I've noticed in the past year when I get up from either a sitting or lying position, something snaps or "shifts" in my lower back on the left side and also sometimes in my hip. It's not particularly painful but it is startling and results in a dull ache all day. Massage helps every now and then. I mentioned it to my doctor and he didn't seem to pay any attention at all. I wondering if the RLS is masking another more serious problem? I already feel like a hypochondriac sometimes (when you have tried as many meds and different docs in as I have in 13 years...???) and feel like I am bothering my doctor. I'm reluctant to go elsewhere as everyone wants my records and then they see the fact that I overdosed 1 1/2 ago... they seem to just freeze. If I could have gotten on an even keel then I wouldn't have felt so helpless and done something so stupid! I'm never going to live it down!
I've been off the Neurontin for 6 days now (it wasn't working anymore) and I am so sick to my stomach. I've been fighting a migraine level headache and am just barely dragging myself to work. Could coming off the Neurontin cause this or am I staring at the flu again? (No fever or anything like that) The only good thing is the weight lose. I'm unable to keep anything down.
It is possible that you are having a withdrawal problem from Neurontin, but that is less likely. It is often hard to figure out what those general complaints may be coming from.
Sent: Tuesday, June 06, 2000 9:06 AM
Subject: I AM NOT CRAZY!
This thing I've had for so many years - and my kids thought I was nuts - IT EXISTS!! Our family calls it THE KNEE JERK, and they know to get out of my way fast. I'll be laying down on the couch and KABOOM! Thanks for the awareness. How come my doctor couldn't tell me what was causing this?
Unfortunately, despite the very high incidence of RLS/PLMD, most doctors know very little about these problems.
Sent: Tuesday, June 06, 2000 7:48 PM
I have had this syndrome since I was a child, now 35.
It drives me crazy as I cannot sleep at night and the long stints of not sleeping have brought on depression and anxiety, and general very low performance (and not looking the best!). I know how you all feel. Its an awful awful thing to have.
Lately I have tried a single bed size electric blanket strapped horizontally across the bottom of my bed (covering only the lower leg area). This means I can turn the blanket up high, and doesn't make the rest of my body hot. I get a lot of relief, and I hope this helps you. I also take a calcium/magnesium supplement every night before bed. I also supplement my diet with folic acid and occasional iron supplementation as well. Apparently smoking is shocking for this condition (which I'm trying to kick). Also, Ultrasweet is apparently very bad, and beta blockers are culprits as well.
Thanks for your other tips,
Sent: Thursday, June 08, 2000 2:26 PM
Subject: RLS plus Complications
How wonderful to find your website during another of my sleepless nights. I have experienced fidgets in my legs, since I was a young girl. They were very mild -- only at plays or places where I had to sit still. If I just grit my teeth, they would go away in a few minutes. When I became pregnant, I, once again, experienced them. My obstetritian thought it was because of blood sugar fluctuations. After my three pregnancies were over, the problem would always go away -- except for a few times a year. A side note: my mother had what she called "ants crawling all in her legs" in her old age and my oldest daughter has restless legs during her pregnancies.
I am now 62 and am experiencing severe RLS every day and night. The fidgets use to be in both of my calves -- now I feel them throughout my legs. My condition became worse about six years ago. At first the fidgets happened only during the night -- soon they started about 9:00 p.m. At first they were about 30 minutes -- soon they were three hours. During the past six months, the problem is constant and it is day and night. I have been wondering why and have a couple of questions.
First of all, in 1994, I was diagnosed with degenerative disc disease in my lower back and neck. This is about the time that my restless legs problem started on a nightly basis. Can there be a tie in with RLS and disc problems? My first medical treatment was with Ultram. I never took more than one pill each night. At first it helped...but, unlike other people on your website, Ultram made me feel very light headed the next day. It, also, made my thought process foggy -- to say the least. I stopped taking Ultram and went back to walking the floor. I, also, went through a phase of thinking eating would help. Twenty pounds later -- I found out it did not.
Now the rest of the story. About seven months ago, it was discovered that I have an uncommon problem called Porphyria Cutanea Tarda. This is interesting as far as RLS goes, because with RLS sometimes one is low in their iron count. However, PCT means I have too much iron. This extra iron is stored in my liver and cannot get out because of an enzyme I am missing. After various tests, it was determined that the estrogen I have been taking for years made the situation worse. I was advised to stop taking the estrogen. As you can tell, the PCT makes my RLS a little more complicated.
To be able to get my PCT in remission, my red blood count, ferritin count, and iron store count has to be extremely low. This is done through phlebotomies every other week. I have had 500 ml of blood withdrawn every other week for seven months. At this time, my iron storage, red blood count, and ferritin count is way below normal. It is now expected that my body will begin pulling the extra iron it needs from my liver. When this works, I will never take estrogen again and should not get too much iron in my liver for years and years.
HOWEVER, the low iron must be making RLS much worse. My legs are about to drive me nuts. I cannot take iron or any medication that might go to my liver -- and I am sleeping about three hours a night (not consistent hours). This week, my doctor prescribed a benzodiazepine for me. I will use it as a crutch for only a few days. I have only had one pill and it did not seem to help my legs. Is there any other suggestions that could give some relief? Please keep in mind that I cannot increase my iron supply and that I don't want medications to screw up my liver? I am at my wits end. If you are still hanging in there with me, I want to thank you for plodding through all of this stuff. It was hard to make it shorter.
The two best drugs for RLS are Mirapex and Requip. These drugs work in a high percentage of RLS patients to markedly relieve the RLS symptoms. Mirapex is not metabolized by the liver at all (it is excreted through the kidneys), but Requip does have significant liver metabolism. In your case of Porphyria, that does not actually mean the either drug has an advantage, as neither drug should bother the liver in any way.
Have your doctor start you on one of those two drugs. Taking a benzodiazepine sleeping pill (Ambien may actually be better and safer for most) is a good idea until you get enough control with Mirapex or Requip, so that you do not even need them.
Sent: Friday, June 09, 2000 10:19 AM
Subject: RLS difficult to control with Mirapex.
I have been taking Mirapex for RLS for some time. I started out with .062 mg. After about a year the RLS worsened and I increased it to .125 mg. a few months ago. Recently the symptoms for started earlier in the day. I use to take the medication at about 4:00 p.m. but now the syjmptoms seem to start at about 1:00 p.m. They also occur early in the morning and wake me up.
I am a therapist therefore I sit while at work. It is difficult to sit, deal with the RLS, and concentrate on what clients are saying. Do you recommend I change medications or increase the Mirapex.? How much is safe and can one be on it forever???? Most importantly, do you think we will ever find out the cause and have a cure???
Many thanks again for you help.
You are still taking a low dose of Mirapex. The average patient takes between 2-5 Mirapex tablets (.125 mg) per day. It is possible that you are getting problems with augmentation (worsening RLS that occurs earlier in the day) from the Mirapex, although that is not too common with this drug, and especially at such a low dose. It is also possible that other factors may be affecting your RLS (such as taking another drug, such as an antihistamine) or that your RLS is simply getting worse.
A change to Permax (.05 mg) may be helpful to see if you improve with this medication and to see if the RLS starts occurring later in the day again. Most people can stay on Mirapex or Permax indefinitely.
Sent: Friday, June 09, 2000 12:39 PM
Subject: Restless Legs and Zolpidem (Ambien)
I have suffered RLS for some years gradually increasing over the period. Now it has reached the level of intolerance and affects me both day and night. I took amitriptyline which worked at night for 12 months or so but then ceased to work. My GP has prescribed Stilnoct ( Zolpidem ) for sleep. I asked for this as an alternative to diazepam but I am very concerned that most references to Zolpidem stress that it is for very short term use only.
I have so far followed your advice and had a break of 2 days after 2 weeks but, for these 2 days my nights are dreadful. Is zolpidem OK for long term? I have an appointment with a neurologist next week and hope to be prescribed one of the Parkinson drugs but mirapex does not seem to feature here in England and there also seems to a problem with ropinirole as doctors must advise not to drive because of possible daytime sleepiness, can you make any suggestions please?
You are lucky that amitriptyline helped you, as most RLS patient get much worse with this medication. All sedatives and sleeping are recommended for only short term use, but zolpidem (Ambien, here is the USA) is quite safe for long term use. No tolerance has yet been reported with this drug. Although I recommend drug holidays, it is not clear whether or not they are even necessary for this drug. If you are having difficulty taking drug holidays, do not worry about following this plan.
Both Mirapex and Requip (ropinirole) may have problems with daytime sleepiness, although this is much more of a problem with the Parkinson's disease drug doses which are much higher than for RLS. I have seen very few problems with sleepiness with either of those drugs in my practice. We use these drugs extensively here without much problem.
Sent: Saturday, June 10, 2000 3:23 AM
I wrote to you about 6 months ago when I started taking Mirapex. I had been taking clonazepam for a few years and it had started wearing off. You advised me to do a gradual change from clonazepam. to Mirapex. It worked for that however; the Mirapex always kept me awake. It seemed to have the opposite of a sedative effect.
I had been traveling recently and the RLS symptoms got very severe so when I got home I asked my doctor to prescribe Requip instead. I tried it for a few days but it did not work: my symptoms got worse. Now I am trying Permax, .05 mg. I took 1/2-2 times last night and had severe nausea. So tonight, I took 1/4 tab in the early part of the night and another 1/4 later and still the RLS symptoms. So I took another 1/4 and here I am up at 3:10 AM. I'm wondering about continuing the Mirapex and the Permax together. Is that dangerous? I have also tried Xanax recently but had a lot of dizziness during the day.
I would not mix Mirapex and Permax together, as it may be difficult to tell which is causing benefit, and which is causing problems (or it could even be due to the mix). Permax can cause significant nausea, so I would not pursue using it.
In your case, Neurontin may be a good choice. Just make sure you go slowly up on the dose as per your symptoms. If this does not help, then you can try Mirapex again, but add another sedative. Ambien would be the best choice, but that is not yet available in Canada. There are other sleeping pills, and you may just have to try and see which one does not cause side effects in you.
Sent: Saturday, June 10, 2000 6:36 PM
Subject: Treatment for PLMD
I have been diagnosed with PLMD. I have tried Klonopin, Permax, Sinemet and Tylenol 3. None of these meds worked and some had side effects. I have taken amitriptyline for about 8 years. which has helped me sleep. Referring to your replies, you have recommended the newer meds, Mirapex and Requip in many cases. If I tried either of these, could I continue to take amitriptyline or does Mirapex or Requip help sleep also? Are there any bad long term effects in taking amitriptyline?
Thank you. Harry
Amitriptyline generally makes RLS worse, but in your case its sedative effects probably put you to sleep and thus eliminate your RLS symptoms. Ambien would probably better for this end. Amitriptyline is otherwise reasonably safe for the long term.
Mirapex and Requip are not sedatives (although some patients may get sleepy during the daytime, in fact others may even get insomnia). They do get rid of most RLS symptoms which in turn lets you fall asleep.
Sent: Sunday, June 11, 2000 8:50 PM
Subject: iron ferritin level question
Do you know if anyone with a low iron ferritin level ever tried to take more iron and their symptoms got worse? I know that most people's symptoms get worse with Paxil, mine got better. Could I be reversed (with the iron thing)? Because I know that Paxil is a dopamine antagonist (is that the one that lowers the dopamine) and iron is supposed to help raise the dopamine right? Just trying to figure this all out.
A low ferritin level does not guarantee that you will respond to iron therapy. Although some patients with low ferritin will get better by taking extra iron, many do not improve. Iron is needed for dopamine metabolism, but taking more iron does necessarily mean you will increase your iron.
Paxil and most of the SSRI's often worsen RLS, but the mechanism is not known. A significant percentage of RLS sufferers actually get better with the SSRI's. So, you are not alone or doing things reversed. RLS is a very unpredictable disorder, especially when drug effects are concerned.
Sent: Tuesday, June 13, 2000 12:17 AM
Subject: RLS: numbness and weakness in hand
I am wondering if you can give me any information on the numbness and weakness in one of my hands. Could this be related to RLS? I sometimes get RLS in my arms and torso, but the feeling I have in my hands is nothing like the RLS feelings? Do you think they are related? Has anyone else experienced this?
Thanks for any information you can give me
Delphine from Grande Prairie, Canada
Most likely this is not related. There are several common conditions such as carpal tunnel syndrome that can cause this problem in the hands. The common conditions should be ruled out before RLS is considered as a possible diagnosis.
Sent: Wednesday, June 14, 2000 12:25 PM
Subject: RLS with surgery?
My symptoms began 5 years ago after undergoing a double knee replacement surgery. it got so bad that no one could keep my legs down in the bed. After that I had both hips replaced 3 months apart. its not so bad anymore & I'm taking Xanax at night. I was wondering if the surgeries might have had anything to do with it?
Surgeries often trigger RLS, but as you can see from your own experience, not every surgery does this. There is no correlation as to which type of surgery does this most often, except that back surgery may be the most common trigger of RLS.
Sent: Wednesday, June 14, 2000 2:04 PM
Subject: RLS not better with Klonopin.
I have been suffering from RLS since I was in grade school. I remember the urge to take my shoes off and I constantly moved my feet around to try to get comfortable. Recently, after reading an article about sleep disorders, BINGO, I discovered that I had RLS. I told my mother about this and she said that she had always had the same problem.
I had talked to a physician and he prescribed Klonopin. The problem with that was I was having to take about 2mg to get rest with out the irrepressible urge to move my legs in bed. I recently went to another doctor and he prescribed Sinemet. I hope this works. God bless all and hope that you get the meds or whatever to get some rest.
Klonopin may help RLS, but for moderate to severe cases such as you, sedatives will not generally work alone. Shorter acting sedatives such as Xanax or Ambien are often better as they have less tendency to cause daytime sleepiness.
Sinemet is no longer used much for RLS as it can cause problems with augmentation and rebound of RLS symptoms in over 80% of RLS sufferers. Mirapex or Requip are much better and do not have these problems.
Sent: Wednesday, June 14, 2000 7:00 PM
Subject: Proprioception (sense of position) and RLS
I have written before and am always grateful for this site. I have had RLS all my life (I am 76 now). It seems to be fairly well managed with a combination of Vicodin ES - 2 at night before bed and 2 at intervals as needed during the day, sometimes 1/2 tablet, sometimes I don't need 2. Plus two 0.25 Mirapex at night and sometimes 1/2 late in afternoon when I don't want to take Vicodin. Mirapex makes me sleepy.
I have recently been going to a physical therapist for help in strengthening my legs and help in being able to walk farther. The RLS seems to cause quite a bit of pain in my legs, especially after walking any distance. The PT noticed that I didn't always know where my feet were. I notice that I walk better in bare feet. She did tests for proprioception in my feet as did the 4 neurologists I have been to. No one found any serious abnormality. However, I have noticed a slight numb feeling in my feet and I do think I have some proprioceptive (position sense) problems sometimes.
Is there any relationship between numbness and any sensory deficits (not really showing on neurological exam, except perhaps a slight neuropathy) and RLS, and if so, can anything be done about it. I can manage with this problem if necessary. I am more just curious about relationships between sensory deficits and also pain and RLS.
Thanks again for taking the time to maintain this site and answer all our questions.
Dorothy from Phoenix
There are usually no neurological deficits found in RLS. I do have RLS patients who complain about burning in their legs, but on examination, no abnormalities can be demonstrated. It is most likely that your feelings of numbness/sensory deficits do not have anything to do with RLS.
Sent: Wednesday, June 14, 2000 10:34 PM
Subject: RLS in children?
My 3 year old daughter has been having unbearable severe episodes of foot cramps/pain (?) for over 8 months. She can't sleep through the night and the episodes have been worsening in severity. She has seen 3 different doctors that tell me that her feet are perfectly normal and there is nothing wrong with her. Meanwhile, we are desperate for help. Is there any chance a 3 year old could already show signs of RLS? If you can provide any information, we would be so grateful.
Sincerely, Cheryl A.,
RLS can occur only in the feet, but that is a very unusual presentation for RLS. Many RLS sufferers can trace their RLS back to early childhood, but usually the RLS symptoms were much milder during their childhood. The odds of your 3 year old daughter presenting with severe RLS pain at such a young age is very low, but of course, it is very difficult to assess children that young, in part due to the difficulty from getting an accurate history and exam.
Sent: Thursday, June 15, 2000 4:06 AM
Subject: Methadone for RLS.
In regards to your RLS,I have had a bad case of it for several years.of course,I didn't know what I had,it was driving me nuts,at first I thought it was my drinking,so I decided to quit.well I was married to a recovering drug addict and she was on methadone,she said "honey would you like to try some of my methadone"well I figured there was nothing to lose.in about 45 minutes the RLS was no longer present.I've been on it for (6) years and every thing is fine,it takes about 30 mg a day,there are some side effects but nothing you can't handle.
Methadone (and for that matter, all the narcotics) is a last resort medication for RLS, but it is extremely effective. Other medications should be tried first, and then if not completely effective, then the narcotic class of medications can be used. You are on a very high dose of methadone and hopefully, you will not become tolerant of this medication, in which case no narcotic may give you any relief.
A better choice would be to use Mirapex, which would likely eliminate your need for narcotic medication. After starting on Mirapex you could slowly wean off of methadone.
Sent: Thursday, June 15, 2000 10:13 PM
Subject: RLS without urge to move?
I wonder if there are individuals with RLS who experience muscular spasms or ticks (described occasionally as "wormy") and muscle cramping but who do not feel the need to move their legs.
I am a 57 year old female who has experienced foot and leg cramps at night for most of my life, with increasing severity over the past 10 years. My father also complained of the same symptoms, as did my sister.
Recently, I began to experience first what felt like twitching and now is best described by the "wormy" phrase that your letter writers defined. My thought was that there is a misfiring of nerves, causing muscles to spasm inappropriately.
When cramping occurs in feet, legs, hands or even abdomen, I usually have to stand, walk, or stretch to relieve the cramp. Short of cramping, however, I am able to lie still as a brick during the worst "wormy" attack.
Question: Are there RLS sufferers who do not experience the need to move their legs?
One of the main criteria for diagnosing RLS is the almost uncontrollable urge to move the limb that has the unpleasant sensation. If you do not have this, then you do not have RLS.
It sounds as if you have muscle spasms that should respond to and be prevented by taking quinine.
Sent: Friday, June 16, 2000 7:27 AM
Subject: Acupunture for RLS?
Has anyone had any experiences with using acupuncture methodology to alleviate or cure RLS and if so, could the source be posted at this site?
Acupuncture and acupressure have been tried by many RLS sufferers. Only a very small percentage get any relief at all, and generally this is very short lived. There is no medical literature on this topic, so we can only go by anecdotal reports. If you check through our web site, you will see at least a few letters stating that they were helped by this type of treatment, but most do not benefit.
Sent: Friday, June 16, 2000 5:15 PM
Subject: Low ferritin level?
I am a 67 year old male who has been bothered by RLS for over 40 years. I have used Sinemet and Sinemet CR for the past three years; however, in April, my medication was changed to Mirapex .125 (2 tablets three times daily). I also had a blood test to determine my ferritin level. The results show the level as 27, which is low.
My question is simple, what causes a low ferritin level? I intend to start taking iron pills; however, I am concerned about the reason for the low ferritin, and wondering if there is something else I can do to raise this count and keep it at a more normal level..
Thanks for your help.
The serum ferritin level reflects the iron stores in the body in a very sensitive way (see letter Page 27, Tuesday, May 30, 2000 1:06 PM for more details). It therefore may be low when serum iron levels are normal. In women the commonest cause is loss of iron through menstrual blood flow. In men the commonest cause is loss of blood through the GI tract. This usually means bleeding from the stomach (ulcers, gastritis, etc.) or from the lower bowels (polyps, tumors, etc.). A low ferritin level in a man should usually prompt a complete GI workup (upper and lower GI endoscopy).
One can get lots of iron in common foods such as liver, red meat, whole-grain and enriched-grain products, beans, nuts and dark-green leafy vegetables.
Sent: Saturday, June 17, 2000 12:36 AM
Subject: Vitamin treatment-how much?
I have recently purchased bottles of folic acid, vitamin B12, calcium and magnesium and I was wondering how much to take per day to benefit from them? Will taking too much be harmful. I took three 100 mg tablets of folic acid and 2 calc/mag. Is that too much? I realize that I may not find relief from them because not everybody does.
Also I am taking Zoloft right now and I understand that it is one of the antidepressants that can, in some people, make RLS worse and I am suffering worse than ever before, since I started taking them. I ran out of pills for two days and for those two days I didn't get restless legs. Now that I have taken a pill today, I have restless legs. Do the effects from Zoloft come and go that quickly? Or is it a coincidence? I also did not drink any coffee or coke for those two days. Is Zyban one of the drugs that is not known to worsen the symptoms of RLS? I thank you so much for answering these questions for me.
Delphine from Alberta, Canada.
I would not recommend taking more than the daily suggested allotment for any vitamin or mineral. You get as much or more than you need for most of these in any good multivitamin (Centrum, for example). Calcium needs to be taken separately to get enough. Pre-menopausal women need 500 - 1000 mg and post-menopausal women need 1000 - 1500 mg per day. Taking too much of any mineral or vitamin has never been proven to be helpful and may be harmful.
Zoloft certainly can cause worsening of RLS with just one dose. You may want to see if eliminating caffeine (cokes and coffee) may have been the cause of worsening RLS in your case, rather than the Zoloft.
Zyban (this is identical to the antidepressant Wellbutrin) is one of two antidepressants (the other is Remeron) that tends not to worsen RLS. I have seen several RLS sufferers that have been made worse (and even better) by Zyban.
Sent: Sunday, June 18, 2000 6:46 AM
Subject: Drugs in the UK (see original letter above, Friday, June 09, 2000 12:39 PM)
I am sorry to bother you again and thanks for your reply re: Zolpidem. I have now been to see a neurologist and he has recommended 4 alternatives as follows:-
1 Sinemet or Madopar. I note that you not not recommend the first any more but can find
no reference to Madopar.
As I was sent by my GP before he was willing to prescribe anti Parkinson medication, I am now a bit stuck. I mentioned Mirapex and Requip but, here these are non-starters in the UK if you want to drive. I also mentioned Pergolide but he was adamant that Sinemet worked although I did mention the notes re Rebound and Augmentation. As I now feel at a bit of a loss, which would you advise to try when I go back to my GP?
Thanks for a well informed site.
Madopar is a combination of L-dopa and the decarboxylase inhibitor benserazide in the ratio of 4:1. Madopar 250 (cross-scored tablets) contains 200 mg L-dopa and 50 mg benserazide. This has the same active ingredient (the L-Dopa) as Sinemet (just the decarboxylase inhibitor is different, but that just helps prolong the action of L-Dopa), therefore, it should be very similar to Sinemet for RLS.
There have been many articles describing the problems with augmentation and rebound with Sinemet. We now know that over 80% will get these problems with the doses of Sinemet that are required for RLS (it occurs much less with doses of 2 or less of the 25/100 tablets, but the vast majority need more than that). I strongly advise you not to use these L-Dopa containing drugs. I have seen far too many patients suffering from the effects of this type of treatment.
Permax (Pergolide) is a good second choice if you cannot get Mirapex or Requip. Get copies of the following 2 articles which demonstrate the superiority of pergolide compared to Sinemet to show your doctors:
Lin, S-C et. al. The effect of pergolide on the treatment of resistant RLS in Sleep
Early & Allen. Pergolide and Carbidopa/Levodopa Treatment of RLS and PLMD in Sleep 1996;19(10):801-810
Carbamazepine (Tegretol) is occasionally helpful (5% or less) and is not commonly tried unless many other drugs fail.
Clonazepam (Klonopin) creates daytime sleepiness many times more often than Mirapex (in my experience at least 100 times). A short acting sedative such as Ambien, Xanax is much preferred.
Amitriptyline (Elavil) is very high on the list of medications that makes RLS worse. Do not take it!
Neurontin (gabapentin) is another drug that may work well and can be considered.
Sent: Sunday, June 18, 2000 11:43 AM
Subject: Long term clonazepam for RLS
I'm 68 years old. My prescription for RLS is clonazepam .5 mg. Are there any long term effects using this. I've used it for about one year. One .5 mg at bedtime. Please respond if possible.
If you are doing fine and have no tolerance (needing higher doses) and no daytime sleepiness from the drug, then there should be no long term problems.
Sent: Tuesday, June 20, 2000 10:58 AM
Subject: Restless Leg Syndrome
When I discovered that there were other people out there that had the same problem as me I was excited to talk to them because my problem is so hard to explain to anyone. I have no pain.......I kick terrible in the night that my husband has literally felt like kicking ME out of bed.
Any time I am at rest especially traveling in a car I am terrible. I have to constantly move or tighten my leg muscles. I have a deformity in my lower back that has always caused me problems but I didn't develop such a problem with RLS until I reached my 40's. Now I only get 2 hours sleep...wake up with this terrible crawling feeling in either leg and walk the floor.
I take Xanax and it helps me sleep but I hate to rely on it. I don't want to take that for the rest of my life. I just read I could have a iron deficiency or magnesium deficiency. If there is anyone out there that could help me I would appreciate it.
Please see your doctor and have him do a serum ferritin level. That will check for iron deficiency in a very sensitive way. Mirapex or Requip taken at bedtime might eliminate your need for sleeping pills.
Sent: Tuesday, June 27, 2000 4:59 PM
Subject: RLS and anti-nausea medication for chemotherapy.
I experienced RLS today while getting Benadryl by IV, my premedication for the drug Taxol because I have bone cancer.
When I reported it to the nurse she said it was a common complaint from patients taking Benadryl...Just a thought for what may cause some RLS symptoms...Good luck to all of in finding the cause..Grace D
It is well known that antihistamines worsen RLS. Domperidone (only available outside the USA) is the only oral anti-nausea medication available that does not do this. Kytril is a new IV or IM medication that does not worsen RLS and can be used as pre-meditation for chemotherapy.
Sent: Thursday, June 29, 2000 7:08 AM Subject: Mirapex
I am having a ridiculously hard time with sleep! I was started on Mirapex 0.5 mg, and did sleep about 4 hours on it. But I began having very real hallucinations! Plus very scary dizziness and marked fatigue. I am on ranitidine and verapamil and read in the PDR that they can enhance the effect of the Mirapex, so I started slowly decreasing the Mirapex dosage until the hallucinations and the dizziness stopped. That seems to be somewhere between 0.125 and 0.25 mg. (Sleep is back to 1-2 hours on the former, and I fear the return of symptoms if I consistently take the 0.25 mg, though it really does not increase the amount of sleep.) Even when I was on the 0.5 mg dosage, I never got more than 5 hours of sleep.
I had a sleep study done last month, which confirmed the RLS. Do you have any ideas or suggestions for alternative medication for those who apparently cannot take Mirapex?
Thank you. Maryam J., Tucson
You have experienced most of the common side effects of Mirapex. This was fairly predictable given the starting dose of Mirapex that you were put on. I start Mirapex at 1/2 or 1 of the .125 mg tablets, then increase by 1/2 or 1 tablet every 5-7 days if needed. Most RLS sufferers will adapt nicely to slowly increasing low doses of the medication and do well with this drug.
You may want to try Requip which is a close cousin of Mirapex. The side effect profile of these drugs is somewhat similar, but they can be different in many individuals. Start at 1/2 or 1 of the .25 mg tablets (equal to .125 mg of Mirapex) and increase by 1/2 or 1 tablet every 5-7 days if needed. Hopefully, that will help.
Sent: Thursday, June 29, 2000 7:29 AM
Subject: Advice re pregnancy and severe RLS
A young woman in her second pregnancy has called our Support Group for urgent help and, in the absence of our Facilitator (on vacation) I am trying to fill in. She is suffering from severe RLS and is getting hardly any sleep at night despite taking Nembutal under the care of her gynecologist. She has asked for any available information and the names of local neurologists -- familiar with RLS -- so that she can suggest such doctors to her gynecologist. I am busy getting such names and making a copy of your Treatment Page which I plan to take to her along with the Living With Restless Legs brochure put out by the Foundation, and the results of our own survey.
In taking a preliminary quick look at the Pregnancy and RLS section of your Treatment Page (which is still typing out) it would appear that the commonly used medications such as Mirapex are not really recommended when there is pregnancy involved. At the same time, you show no medications with an "A" classification -- meaning completely safe. Such being the case, what should a gynecologist prescribe for someone with severe RLS and another young child to tend during the day.
Another important question. Should a gynecologist, in this type situation, refer the patient to a neurologist -- or instead be guided by what we can provide? In other words, should a neurologist be involved where pregnancy is an important issue? Who is "on first?"
These may seem to be stupid questions but I need some medical advice to go along with the information I am putting together for the patient and her doctor(s).
Newt, in Oregon
There is no absolute answer as to who should prescribe the RLS medication. Basically, whoever is comfortable prescribing the medication should do it. In the case of RLS in pregnancy, most doctors will not want to prescribe anything. We try to give pregnant patients as little medication as possible, but when RLS is severe, medication may be necessary.
I generally choose Permax or Ambien as they are class B drugs. I will write them with the approval of the patient's obstetrician. If the obstetrician is willing to write those drugs then that would be fine, but as they do not know much about RLS, most will be unwilling. It often is necessary to get a neurologist (who is familiar with RLS) or a sleep specialist to initiate the prescription.
Sent: Wednesday, June 28, 2000 11:56 PM
Subject: Serum Ferritin Level
Up front, let me thank you for always promptly answering all our questions. It means a lot to me and other sufferers to know someone who cares can help us.
My serum Ferritin level just came back at 4, up from the 3 of six months ago. I realize this is very low and I'm hoping it has been the reason for my great upswing in symptoms the last two years. My question is this; now that I am taking the proper dosage of iron, how long will it take before my level is respectable again?
As you can tell, I'm anxious to get this right!
Iron absorption can be quite variable from person to person. Generally it is best absorbed into the blood stream from the stomach when taken at least one hour before eating (assuming stomach irritation does not stop you from taking it this way). Taking Vitamin C (250-500 mg) just before this helps the absorption. Despite this, some patients cannot take in enough iron to raise their iron levels. Normally iron stores are replenished in 6 months of adequate iron therapy.
If oral iron is not doing the trick, then intramuscular iron therapy may be used.
Sent: Saturday, July 01, 2000 9:47 PM
Subject: RLS update, insomnia with Mirapex
We first started "emailing" in May of 1997 when you directed me to the use of Sinemet CR. My local physician prescribed the medication for me and for the last 3 years I have been taking 2 Sinemet CR 25/100. Had been taking 2 at bedtime which seem to produce the best results. Then over the last 60 days I must have developed a tolerance to the Sinemet as I have been having some terrible nights.
Coincidentally, about 2 weeks ago I attended the meeting of the Portland, Oregon RLS Support Group and they showed the most recent video tape of your discussion with the LA Group. I certainly enjoyed the tape as it was highly educational and it was enjoyable seeing the person that I had emailed to over the years. It seemed that most of the members of the Portland group had switched to Mirapex quite successfully as pointed out in your video tape.
I went back to my family physician and he prescribed .125mg of Mirapex at bedtime as a starting point. Well Mirapex produce severe insomnia and also frequent urination during the night, which is abnormal for me. So at the moment I am tired and discouraged. Have stopped the Mirapex and plan to try the Sinemet again until a better solution is found.
My reason for writing is to ask,that based on my situation, is there any recommendation you might have that I should try next. My physician readily admits little knowledge of RLS and is most cooperative in taking your suggestions.
Thank you so very much for your consideration,
Insomnia is a known side effect with Mirapex. You may or may not get the same problem with Requip, but it is worth a try. Have your doctor prescribe a few of the .25 mg tablets (equal to .125 mg of Mirapex) and try just 1/2 before bed the first night. If you get insomnia, then do not take any more, but if you do well, then increase the dose by 1/2 tablet every 5 days until your RLS is not a problem for nighttime sleeping. Permax is another choice, again starting with a very low dose of 1/2 of the .05 mg tablet and increasing slowly as needed.
If the above does not work, then Neurontin may be a good choice.
Sent: Sunday, July 02, 2000 2:44 AM
Subject: Xanax not helping renal failure incuded PLMD
Sometime ago I had concerns about my husband's PLMD (he has renal failure and is on dialysis). You suggested that he take alprazolam (Xanax). After discussion with his specialist he has been taking this and for a while he was a lot better. However, of late the twitching - jerking and hiccuping has become terrible and hardly ever stops. Also he finds it very difficult to sleep at night. Do you have any suggestions that he can take up with his specialist?
The dopamine like drugs may be quite helpful for RLS/PLMD, even for patients on dialysis. Mirapex and Requip both work very well for RLS/PLMD in general and should do fine for your husband. Mirapex is excreted mostly through the kidneys, so unless it is dialyzed out during his treatments, it cannot be used. Requip is metabolized in the liver, so it may be a better choice. Your dialysis doctor will know for sure how safe these medications are for your husband.
Sent: Sunday, July 02, 2000 6:29 PM
Subject: RLS medication questions.
I have had restless leg symptoms for about 40 + years now (I am 60 now). It got worse in my 50's. It got so I was up half the night, standing in front of the TV, watching it, waiting for the tickle-twitch-spasm in (usually) my right foot/leg to go away. Once in a while it happened in my left leg, but 19 of 20 times in the right leg/foot.
About 5 years ago I learned I had sleep apnea, moderate. A dental appliance that holds my lower jaw forward "cured" the apnea--no more apneas if I wear the appliance. I began wearing the dental appliance in September, 1998. The same month I was put on Permax by a neurologist I was sent to in Boston; I got great relief from the Permax. However, simultaneous with the two new treatments (for apnea, and the Permax for RLS) I began to sleep only 3-4 hrs a night, awakening at about 3-4 am, feeling very awake and clear-headed. My doctor said maybe I didn't need more sleep, that the curing to the apnea had provided greatly increased REM sleep and so I had enough sleep in 3-4 hrs.
However, this winter, after about 1 1/2 years on 1.0 mg Permax, I have found myself increasingly sleepy during the day. Several times recently I almost fell asleep driving my car, and it scares me.
I am due to see my physician in a few weeks for my annual checkup; I am intending to ask her to change my RLS medications from Permax to something else--I thought Mirapex was the choice, but note that daytime sleepiness is a common side effect with that med.
After reviewing the RLS Treatment Page meds, I am inclined to ask her to put me on Xanax. My RLS starts up around 4-5 PM, and lasts to about 4-5 am, if untreated.
Do you agree the Xanax should be my next choice? And if so, how would I transition from Permax to Xanax, particularly to cover the 12 or more hours I am vulnerable each night?
I thank you in advance.
Xanax, or other sedatives are not a good idea because of your sleep apnea problem. Sedatives can worsen sleep apnea, so it should never be added without a repeat sleep study to check that the sleep apnea does not get exacerbated too much.
Mirapex is still a good idea. Most of the people who get daytime sleepiness take over 1.5 mg per day (12 of the .125 mg tablets) which is much higher than most of the RLS patients. Mirapex will often work when Permax has failed.
Sent: Monday, July 03, 2000 2:13 PM
Subject: RLS from sitting in a chair?
Having experienced RLS for 20 years, I've noticed that it is much worse when I've sat in my easy chair watching TV for an hour or two just before going to bed. I think it has something to do with the chair's pressure on the back of my legs. Therefore, my fairly successful remedy is to make sure I am on my feet for few minutes prior to bed, walking or doing other leg exercises. I am a 62 yr. old retired male.
RLS typically gets worse in the evening and when you sit or lay down. It is more likely those 2 things that worsen your RLS in the evening, rather than pressure from your chair. Walking or stretching exercises often help most RLS sufferers when their symptoms are acting up.
Sent: Tuesday, July 04, 2000 2:32 PM
Subject: Insomnia, fatigue and sleeping during the day
I am at my wits end . I have had RLS ever since I was a child; I am now 72.
I could not go to a movie, play etc in the evening, but I did sleep, most days until 7 am. always awoke tired. About 10 years ago I attended a lecture about sleep apnea and I knew that was not my problem. My legs got so bad that evenings I spent standing and doing craft work. Seven years ago my doctor started me on medication for the RLS, Klonopin. That did not help with the tired feelings I had during the day.
Over the years I have tried everything: Sinemet and Sinemet CR, Neurontin, Permax (which made me disgustingly sick). Once I started these medications I started to awake at about 3:30 am. At first I was sleepy but not tired, but now I am both. I have been put on every sleeping medication there is; they do not keep me asleep any longer than 3 to 4 hours but leave me feeling so hung over and so dizzy that I had to stop taking them.
Two and a half years ago I was put on Mirapex, and immediately I knew I found a miracle: I was no longer sick or hung over as long as I did not take a sleeping medication. I still sleep only about 3 to 4 hours. However, during the past few months I get so tired during the day time, when I feel me body will collapse into my shoes, that I have to take a nap. I take 3 thirty minute naps a day, fall asleep watching TV or in a movie, if I can sit through it. Yesterday during my craft group get together I fell asleep twice. I fell asleep at our RLS support group meeting and I had to pull off the road as I drove home.
I take 4 of the .125 Mirapex each day, at noon, dinner time and about midnight I take the other two. If I am going to be on the road alone. I take 1/4 of a Provigil, which helps about 4-5 hours, but the days I take Provigil, I sleep even more poorly. I am at the point were I am so sleep deprived that I am depressed, sleepy all the time and tired. I have a wonderful husband who encourages me to go in for my naps and who helps me out so much. We do very little together because I am always sleeping. Even Sonata and Ambien do not give me any extra sleep ( I fall asleep almost immediately) but makes me groggy during the day.
I was given Requip but we are going on vacation and I am afraid to try anything new when I have no doctor around.
What suggestions do you have!
Thank you, Kala
It is possible that Mirapex is making you sleepy during the daytime, but only a trial off then back on the medication will tell you for sure. Requip is quite similar to Mirapex, but may have a different side effect profile. It is likely that you will not have too much of a change (positive or negative) with Requip, but it is worth a try.
Sent: Thursday, July 06, 2000 6:39 AM
Subject: Problems with Parlodel for RLS.
Can you tell me if bromocriptine (Parlodel) has some sort of muscle relaxant in it? My doctor started me on it almost a month ago to replace the clonazepam, which I am about to end - down to 1/4 tablet for this week, then none. I've noticed in the past few weeks that suddenly my bladder muscles have become weaker and weaker and now they cannot retain the urine like they used to. True, I had a small occasional leak, but now I suddenly seem to have almost no control.
Thanks for your help,
Lynne G., Scottsdale, AZ
Parlodel works like dopamine and there is no muscle relaxant in it. Urinary frequency and incontinence (and strangely enough, the opposite problem, urinary retention) are some of the less common side effects of this drug.
A Reply from Lynne G.
Sent: Friday, July 07, 2000 7:12 PM
Subject: Drug holidays
Thanks for your very prompt reply to my question about Parlodel and urine frequency. I shall take this information to my doctor and see what he says about changing meds. I asked my doctor for Mirapex, but he gave me Parlodel (bromocriptine). I'm down to 1/4 clonazepam and will be off totally next week. The withdrawal symptoms seemed to have calmed down a bit, which is helpful.
My new question: I am taking 3 meds right now - Ambien, Ultram and the bromocriptine. When I go on a 2-day every 2-week holiday, do I do all of them at one time? Or do I stagger them? The thought of being totally off everything even for 2 days terrifies me, since my RLS was so bad before the meds. I know you say it's best to be totally off the medicine, but if the RLS acts up in those two days, can I substitute something else? I don't know at this point whether I'll go back to clonazepam after awhile. I hope not.
Thanks for your wonderful help.
Lynne G., Scottsdale, AZ
Your doctor probably is prescribing Parlodel instead of Mirapex because it has been around much longer and he is likely much more familiar with it (and likely completely unfamiliar with Mirapex). A second reason often is insurance coverage of the more expensive Mirapex, especially with HMO's. Mirapex is a much better drug than Parlodel and there is no valid reason to use the "second class drug". Drug holidays should only be with one drug at a time. You are correct that doing a holiday on Ultram and Ambien at the same time would be extremely difficult. If you cannot do the drug holiday with even one drug, do not worry. Although I have never seen tolerance/addiction developing with a patient taking regular drug holidays, the likelihood of getting tolerance/addiction to Ambien or Ultram if taken carefully is still very small.
I see no reason for you to use Klonopin again. Using the other medications should eliminate the need for that drug.
Sent: Friday, July 07, 2000 6:42 AM
Subject: Quest for advice
I have been an admirer of the mass of information you have made available for over a year now with respect to RLS, but appear to be experiencing something slightly different to most sufferers.
I suffer from the classic symptoms of RLS such as the continual urge to move my legs etc, but these symptoms begin the moment I wake up and last throughout the day. They become progressively worse after lunch and often make it impossible for me to stay seated in the evenings. The difference is that when I lie down in bed they seem to ease and I have only ever been prevented from sleeping on a couple of occasions in the last 5 years. However if I try to sleep sitting upright, such as on a plane, the sensations infuriate me and sleep is impossible.
I have consulted my doctor who insisted I had cramp and prescribed quinine but this had no noticeable effect. I have also noticed that coffee makes my symptoms worse, but I am very sensitive to caffeine and one cup of coffee gives me hot flushes and my pulse seems to increase in intensity. I have therefore stopped consuming caffeine but my RLS symptoms are getting worse by the day and they are making it very difficult to do my desk based job.
The advice I am after is, do you think I am suffering from RLS or another syndrome? Do you have any advice as to UK doctors with experience of RLS or how to find them, as I have recently moved and don't presently have a GP? I am a 25 year old male living in South Manchester, UK.
Many thanks in advance for any suggestions or advice,
You seem to have all the classic RLS symptoms. Your hard to describe leg sensations occur more at rest than when active, get worse as the day progresses, and seem to be relieved by activity, except when going to sleep. That is extremely unusual, as RLS is usually at its peak at bedtime, so that should be your most difficult time. The sitting position usually is no worse than being in bed for most RLS sufferers as it is the inactivity, not the position that is the triggering factor.
Despite your unusual bedtime lack of RLS complaints, it is extremely likely that it is RLS that you are experiencing. The best treatment is Mirapex or Requip. These are available in the UK, but there appears to be an increased level of concern (compared to here is the USA) about daytime sleepiness which can occur with these drugs. These drugs can cause daytime sleepiness, but generally at the doses used for Parkinson's disease (greater than 1.5 mg per day) which is much higher than the small doses used for RLS.
Mirapex or Requip should relieve your RLS complaints and let you live a normal life. For plane trips, a narcotic (codeine or hydrocodone) or even a sleeping pill may suffice, but Mirapex and Requip are even better.
Sent: Friday, July 07, 2000 9:39 PM
Subject: Grogginess with Requip
I began taking Requip at night in order to cut back on Oxycontin. But I can't take it in the afternoon or early evening because it makes me so groggy, even though I can't actually sleep with it and need Ambien for that. My question is this. Have you found that with steady use the side effects, such as being groggy, diminishes? I am now taking 1 mg at night. It doesn't seem to help me much if I am in the middle of a full blown attack of RLS. But works best if I use it for prevention. I would like to eliminate Oxycontin, but can't quite figure out how to do that.
Sleepiness or in your case, grogginess has been associated with Requip. It occurs more often when the dose gets higher, generally above 1.5 mg per day. You will likely have to limit your use of this medication to bedtime.
Consider using Ultram instead of Oxycontin. If it does not work as well as Oxycontin, you may be able to alternate it with Oxycontin thereby decreasing your dependence on either drug.
Sent: Monday, July 10, 2000 12:15 PM
Subject: RLS and varicose veins and problems with Requip.
When my RLS gets bad enough I surf the net or play computer games. Last night I found your site and it is by far the best out there. Your discussion of drug and alternative therapies will be taken to my physician tomorrow. He is good enough to admit he doesn't know much about RLS. The "expert" on sleep disorders was a disaster, knew enough to be arrogant but not enough to help when I needed it.
1. Thanks for noting the possible connection between varicose veins and RLS. I have observed that about the only constant which is noted by every sufferer is that relief comes when we stand or walk. In my mind this points to a circulatory component. Most RLS sufferers end up in the hands of "sleep experts" (read: neurologists) so research has been directed only toward the brain.
2. Look out for Requip. It stopped my leg movements cold but I did not shut my eyes for three days. I felt like I was on speed.
Victoria B. Salem, OR
You are right that even most sleep experts (including me until I got involved with treating more RLS patients) have relatively little expertise in RLS. The cause of RLS is still completely unknown and the role of circulation is certainly not understood.
Requip (and Mirapex) have warnings about causing sedation, but some patients do suffer the opposite. It is hard to understand how the same drug can cause such different effects.
Sent: Monday, July 10, 2000 12:29 PM
Subject: Cabergoline for RLS (see previous letter above, June 18, 2000)
Thanks for your reply to the above regarding the treatments suggested by a neurologist. I have now seen my GP and he has read through a lot of paperwork I have downloaded from the internet including your comments and recommended articles. I also gave him a copy of the Ekbom Support Groups newsletter which recommends either Apomorphine or Cabergoline. He was prepared to give me Pramipexole but , unfortunately there was this warning about driving so I couldn't try it. He has decided that I should try the Cabergoline which is recommended here in the UK. I have not noticed it mentioned on your site, have you heard of it?
Once again, thanks for all the information you provide,without it I would be on Sinemet or worse.
Cabergoline goes under the trade name DOSTINEX and is indicated for the treatment of hyperprolactinemic disorders, either idiopathic or due to pituitary adenomas. It is not used here for Parkinson's disease. I do not know of anyone who has used this for RLS, but as it is a dopamine agonist and acts on the D2 receptors (similar to Permax, Mirapex and Requip), it should be effective for RLS.
Let us know how you do on this drug so that we may gain some knowledge from your experience.
Sent: Tuesday, July 11, 2000 10:11 AM
Subject: Brain noises, jerks at night.
Sometimes at night when I am just about asleep, I will get a sudden high pitch sound with a short "jerk" that makes me wide awake. This does not happen every night. Just sometimes. It is hard to explain. There is no pain involved and my body does not jerk....it just seems like a "ping" or rubber band snapping. really strange.
I don't have any other reaction to this but I would like to know what it is and what is causing it. If you can give me any kind of explanation, I would appreciate it. It is really not anything I can't live with. It is just annoying when I am just about asleep and am awakened so suddenly.
Thanks for any information you can give me,
What you are experiencing is called a "hypnic jerk". It is a well known phenomenon which occurs in stage 1 sleep (very light sleep) and due to the whole body shake or jerk, one usually wakes up from this light sleep. We do not know why it occurs and what to do to prevent it, but as it is usually a trivial problem which occurs only occasionally, little medical investigation has been done to explore this hypnic jerk.
Sent: Thursday, July 13, 2000 10:51 AM
I have PLMD only and have been on various medications. MY problem now is this: I have been on 900 mg of Neurontin and 3 mg Klonopin for over a year now. The Klonopin I have been on for about 2 and 1/2 years. starting with a dosage of 1mg and it was increased each time it stopped working. Now I find that sometimes I wake up one hour after falling asleep and not being able to go back or if I do think I sleep, I wake up exhausted and stay that way all day. I know it must be the drugs. My Dr. feels that if it works some it's OK.
What I would like to do is wean myself off all medications to see where I stand. I have no idea at this point. I don't know if I am just addicted or what. I think I read a response from you about being able to take melatonin in conjunction with these medications. If so, how much could I take and should I take the regular or time release?
Your input would be greatly appreciated.
Melatonin may help some people fall asleep, but the response is quite variable. Medical studies have shown inconsistent results with Melatonin, but there are many people with insomnia (RLS/PLMD or otherwise) who do well with this drug. The usual dose is 1-3 mg at bedtime.
Mirapex and Requip work very well for PLMD. Have your doctor prescribe one of them and you may not any other treatment.
Sent: Thursday, July 13, 2000 7:20 PM
Subject: Help! Do I have RLS?
I'm not sure if RLS is what I have. I've been to many kinds of doctors over the past year and nothing shows up on their tests. The last physician I saw was a neurologist who said I might have RLS. Both of my legs ache ALL the time and I have tingling on the bottom of both feet. My legs feel heavy and weak. I have difficulty sitting or standing for any length of time. If I do a lot of walking my symptoms are worse.
I dread sleeping because I toss and turn all night long because of the severe aching on the side I'm laying on at the time. I don't have any leg cramps or jerky movements. Lately, my wrists seem to ache also. I'm not sure if that's related. Nothing I do seems to relieve my symptoms. My doctor gave me Permax. I'm afraid to take it because of possible side effects and the fact that there is no evidence that RLS is what I have.
Can you possibly offer any advice? I desperately need some answers. Thank you,
To diagnose RLS, you must have symptoms that are worse when you sit or lay down and get better when you move the affected limb. The discomfort should also be associated with an almost uncontrollable urge to move the affected limb. The symptoms should be worse in the evening and night and better in the morning (after 6 a.m.).
If your symptoms conform to the above description, then you likely have RLS. If so, a trial of Permax would be helpful. Mirapex or Requip tend to have less side effects and work better than Permax.
Sent: Friday, July 14, 2000 2:29 PM
Subject: RLS in trunk of body
I experience extreme agitation - overly caffeinated-like feeling, drug withdrawal-like, nerve endings raw and "on fire" sensations - in the trunk of my body, specifically in the abdomen. I share all other symptoms and manifestations of RLS, and on the basis of a sleep study done last August, the medical sleep specialist diagnosed RLS. Presently I am taking Mirapex and an occasional Sinemet - it has at times been like a nightmare working my way through various medications - and since that is not the focus of my letter, I won't elaborate on that aspect now. What I would like to know is as follows:
1. Hopefully, a confirmation of RLS occurring in the trunk of the body; incidents of it being in the abdomen specifically. My doctor is reluctant to acknowledge that the symptoms are in that area.
2. Any medications more effective than others for this particular manifestation.
Thanks so much for whatever information you can provide. Your web site continues to be a source of valuable data and support for which I am most grateful.
We have had several reports of RLS in the trunk. It your strange symptoms occur more at rest and make you want to move the affected area for relief (almost uncontrollable) and movement does help your discomfort, then you can be sure that you have RLS. Confirmatory evidence would be if you improve with RLS medication such as Sinemet or Mirapex.
There is no special treatment for RLS of the trunk compared to the limbs so I would just recommend the usual RLS treatments which you are already taking.
A Reply from Diane
Sent: Friday, July 14, 2000 6:57 PM
Subject: Re: RLS in trunk of body
Thanks ever so much for responding to my letter. Yes, my symptoms do occur at bedtime and make lying in bed impossible; in fact for years my husband and I have slept in separate beds and were almost at the point of moving into separate bedrooms. Movement of any kind helps - I go for long walks/jogs in the middle of the night. A cup or two of coffee sometimes reduces the agitation as does noshing.
And, yes, I have improved dramatically since I began taking medication; although, like so many patients with this malady, I continue to have problems getting the right combination and dosage of meds. Mirapex seems to be holding the nighttime demons at bay for now. Since you have confirmed the manifestation of RLS in the trunk, I am curious as to what symptoms patients complain of.
And I would love to hear from anyone who shares my unusual RLS situation.
Thanks ever so much,
Most of the RLS sufferers with trunk symptoms have difficulty describing their symptoms. We will post your letter and see if other similar patients will write to describe what they feel.
What dose of Mirapex are you taking? You should be able to control your RLS complaints with this drug alone so that you should be able to sleep with your husband without any difficulty. If not, you may need your dose of Mirapex adjusted or other effective RLS medication added to your regimen.
Sent: Sunday, July 16, 2000 8:03 PM
Subject: Re: RLS in trunk of body (see letter above)
Again, thanks so much for your prompt response. I am presently taking 0.125 mg of Mirapex, 1/2 pill between 5 and 6p.m. and the other half at bedtime. My doctor started me out in March with 3 tablets a day which did indeed control my the RLS symptoms but left me so tired I could not function during the day - my head felt heavy, drugged, achy. He assured me these side effect would decrease in time but they did not; I therefore reduced the dosage, and most nights the two halves suffice, though barely. I'm lucky if I get 4 hours sleep before the RLS symptoms kick in again. Another 1/2 relieves the problem, but leaves me dragging in the morning.
When I was diagnosed with RLS the doctor first prescribed Sinemet, assuring me there were no side effects. I experienced rebound and augmentation - only from sources such as yours on the web was I able to identify these terrible reactions. And from these web sites, I knew there were other meds used for RLS. When I asked about sleeping pills (Ambien, Sonata), "benzodiazepines" such as valium, muscle relaxants or any codeine-based pills, the doctor refused to prescribe any of them. He switched me to Mirapex which gave me relief immediately. Because at first I was unable to handle the dosage, he had me try Permax and Neurontin but neither medication reduced the symptoms. Many sleepless, maddening nights later, I went back to Mirapex settling on the two halves per evening.
If you could suggest other effective medication that I could take in conjunction with the Mirapex to help me get through the night, I would appreciate it.
The narcotics such as codeine or hydrocodone (Vicodin) give excellent relief for RLS symptoms. They are quite safe if used sparingly in addition to Mirapex. If your physician will not prescribe them due to fear of addiction, Ultram (a non-narcotic pain killer) often works as well.
Requip, which is similar to Mirapex, may work as well, but may not have the fatigue related side effects of Mirapex (only a trial on it can ascertain that).
Sent: Monday, July 17, 2000 10:30 PM
Subject: RLS symptoms
I am a 56 year old female and have had symptoms since my early thirties. I was interested to read the letter from the person who said that her symptoms began when she had anorexia. Mine began when I used to do starvation diets to lose weight. The sensation in those days would be in the pit of my stomach, between the sternum and the navel. It was a gnawing sensation which I interpreted as hunger pains.
Only later, when the restless legs set in, with an intolerable discomfort deep in the soft tissue behind one of my knees, did I realize that the two were tied together. They would often come at the same time, with an additional discomfort on the top of my head. On very rare occasions, I have also had the discomfort in the fold behind my elbows. The only way to get relief was to crouch on my knees, pressing them into the mattress and pushing the top of my head down against the headboard of my bed or into my pillow, with my bottom raised. Sometimes I would get up and nibble on a dry cracker to ease the stomach agitation. I'd get very short-lived relief from sipping water and doing leg stretches.
After years of being told by doctors that it must be a back problem, or that it was one of those things that was very difficult to diagnose, I finally read an article in the newspaper about RLS and as a result saw a sleep disorders specialist. After trying a couple of drugs that didn't work or worked only temporarily, I am now on Mirapex, and take .125mg when needed (almost nightly). It doesn't always work completely, but most times gives me enough relief to get to sleep. This is great for someone who thought she may never get a good night's sleep again.
I am reluctant to double the dose as recommended by my doctor, as I am afraid that if I do, I will need more and more, and then what? I have been on the Mirapex for about three or four years. Am I right to worry about needing an ever increasing dose?
This website is a marvelous resource. Thank you, thank you!
Pat K. in Rockville, Maryland.
There are very few patients who get tolerance (less than 10-15% by my unofficial estimate) to Mirapex. If that happens, then we have had success changing to another similar drug such as Permax or Requip.
You should have no trouble increasing the Mirapex slowly (by 1/2 or 1 tablet per dose) as directed by your physician until your RLS is mostly gone. The odds are markedly in your favor for getting less RLS symptoms and no additional problems.
Sent: Wednesday, July 19, 2000 11:42 AM
Subject: Doxepin for sleep
I have used Doxepin for many years for sleep. Can Doxepin cause RLS?? I have tried not to take it, but when I do I can't sleep. My condition has worsened lately so I need to try some kind of treatment.
Doxepin, like most antidepressants, is on our list of drugs that tend to worsen RLS. Some RLS sufferers may notice no effect and a very few may actually get better, but the vast majority get worse on these type of drugs.
Benzodiazepines and especially the newer non-benzodiazepines Ambien and Sonata, are much better medications for sleep than the antidepressants.
Sent: Thursday, July 20, 2000 6:31 PM
Subject: restless legs syndrome and Leg-Aid
I recently suffered a brief bout of restless legs syndrome. It scared me so much. I thought I was going to have to stop working and live the life of a disabled person. I went to Vitamin World and spoke with a salesperson. I was surprised she'd heard of this syndrome. She recommended a mega-vitamin and a product called Leg-Aid.
This product contains an herb called butchers broom. I was skeptical but I'm happy to report it worked. I began to feel the results the first night. In addition to taking these pills I also do not allow myself to nap during the day. So far this is working for me. I hope this will help someone else. I certainly know how you feel.
We have not heard much (if anything) about Leg-Aid and RLS. We will post your letter and see if others have any comments about this treatment.
Sent: Saturday, July 22, 2000 6:24 PM
WOW! Watching TV with my wife this evening and I got that weird feeling in my legs again. I figured I would do a search on restless and see what came up (expecting to find some weird xxx site or something). My mind is completely blown to discover this disease and the fact that something may explain my vampire sleeping habits. I always figured it was just my love of late night TV.
I never even tried to explain the feeling to anyone because I could not explain it in words. I just have to move my legs?!?! In a way I'm very relieved but in other ways its kind of frightening to read the scope of this problem and lack of a definitive treatment. You can bet I'll be on the phone with my doctor first thing in the morning!
Good luck and thanks to everyone.
Glad you found us. Let us know how you do in the future with proper treatment.
Sent: Tuesday, July 25, 2000 4:59 PM
Subject: Zopiclone (Rhovaine)
I have recently been diagnosed with RLS. My physician at the Sleep Disorders Clinic has suggested that I try a medication called Zopiclone (Rhovaine). Can you comment on this medication--side effects, success rates etc. I have been taking Prozac for the past five years. My daytime sleepiness problem (mainly while driving) precedes the start of Prozac. Recently I've begun taking iron pills as my iron was found to be low. Thanks in advance for your response.
Zopiclone is a non-benzodiazepine sleeping pill that is similar to the two newer hypnotics available in the USA, Ambien and Sonata. This drug is not available in the USA yet. It is short acting and should do well for mild RLS.
Moderate to severe RLS should probably be treated with the Parkinson's disease medications, Mirapex or Requip.
Sent: Tuesday, July 25, 2000 5:41 PM
Subject: Why does moving make it worse?!
This site makes me feel so much better knowing that there are other people out there that understand me. It's so hard to explain it to my family and loved ones.
When I get that terrible urge to move my legs at night, I move them. Moving them help get rid of the urge, however, when I stop, the urge is ten times more powerful. Sometime I fall asleep and am still moving my feet and legs. I know this because my boyfriend tells me. When I wake up, my legs ache greatly and feels like I ran a marathon.
When I'm stressed, it seems to be worse. Does stress stimulate RLS? Thank you for your help.
It is unsual to have the RLS get worse after getting relief from movement.
Stress is a common factor that may worsen RLS. Not every RLS sufferer will get worse with stress, but a large percentage complain of this problem. Consider Mirapex for treatment and you may be surprised how well you can feel.
Sent: Wednesday, July 26, 2000 7:34 PM
My son who is 3. He has what you describe as periodic limb movement disorder. My mother has RLS. I'm not sure if my son also has this. Can you give me some idea on how to tell if he does? The other thing I wanted to ask is how do I get him to have a normal sleep pattern? Right now he sleeps between 8 to 10 hours. Then the next day he might sleep 12 or 13 hours. I'm up a lot because he gets up around 5 in the morning then will go back to sleep in about 3 hours.
Each day is different. I never know if I will get sleep or not. Then there are times that he will have a normal sleep pattern for about 3 days or so . Can you help?
Thank you for your time,
It can be very difficult to diagnose both PLMD and especially RLS in children this young. It is hard for children to describe their RLS complaints and most doctors have very little knowledge or insight into this disorder.
My advice is to take your son to a pediatric sleep specialist and tell them your concerns about his possible RLS. They should be able to figure out his problem and their is much better therapy for RLS/PLMD now, even for children (check out our web site).
A Reply from Joyce H.
Sent: Thursday, August 03, 2000 5:36 AM
Subject: Re: RLS/PLMD
Thank you for the advice. He is seeing a neurologist and he is calling what my son has seizures. My son only does the movements in his sleep. The doctor has him on Depakene. That seemed to work but now my son does these movements when he naps. Your description of PLMD is what I see my son doing when he sleeps. If you can provide more help I would appreciate it.
If your son seems to have PLMD by your observation, then it is very likely that you may be correct in your diagnosis. You should insist on an overnight sleep study (you can be present) which will easily differentiate between seizures and PLMD. If your neurologist will not order this test, then you should insist on seeing a pediatric sleep specialist. The correct diagnosis is important to guide therapy.
Depakene is a good seizure drug which have some effect on PLMD, but it is not the best treatment for PLMD.
Sent: Thursday, July 27, 2000 8:11 PM
Subject: RLS and running
Am a 49 year old male. Have been running over 2000 miles per year for over 20 years. In the last 6 months have been having the wormy burning feeling described by other writers. My main complaint is fasciculations in my calves and feet. Have been to neurologist who did an EMG and basically ruled out ALS, MS, and Parkinson's.
Diagnosis was benign fasciculation's. He said the stress of my job and taking care of my wife who has severe depression was likely the cause. He prescribed Valium which I take 4 mg per day and Soma 350 mg. As I can't work and take these pills I take them in the evening. They don't stop the symptoms but they calm me down enough to sleep.
I also take 150 mg of Wellbutrin for mild depression. When I tell the doctors that I am taking Wellbutrin I get the feeling they think I am crazy. I am not. During the day I stand and walk as much as I can. Sitting for a long time is difficult. My running has not suffered too much and that is the only time I have complete relief.
On the internet I read a very disturbing article by Dr. Silber from Mayo linking RLS to the early stages of Parkinson's. Quite frankly I am now scared. what is your feeling on this? I live in a small town and don't have a lot of confidence that the Docs have experience in these matters. Throw in the real possibility that this may be a running problem and not RLS, or a stress related situation and I am perplexed.
I was thinking of going to Mayo in Rochester as they have a sports medicine facility and a neurology dept. A diagnosis would give me peace of mind and a plan to follow. I can live with the symptoms with a little relief at night but the uncertainty brings on more stress which starts the cycle again. Any thoughts?
It does not sound as if you have RLS (not even close, from your description). I have seen many patients who have benign fasciculations and this is almost always more of nuisance, rather than a serious medical problem. It is likely related to your high level of running activity.
RLS does not lead to Parkinson's disease as far as most RLS experts are concerned.
Sent: Thursday, July 27, 2000 10:02 PM
Subject: Mirapex and RLS
I was finally able to get my doctor to give me a prescription for Mirapex and I have been on it for about 9 days. I started out with .125 mg at bedtime. I am also taking Ambien and Ultram, but my sleep is not as good as it used to be. I had the feeling that I have a very shallow sleep, almost at the waking stage. My doctor had given me enough in the prescription that I could take 2 if I wanted. I tried taking one at dinner time, then one at bedtime, but I still didn't sleep too well. (I am also taking Kava Kava at bedtime, hoping it will help me fall asleep faster. It works most of the time.)
I've even tried taking one at lunch instead of dinner, because RLS symptoms come in the afternoon now. I forgot to take it one day at lunch, so took it about 3 PM., on an empty stomach. For an hour or so I could feel my heart acting differently--anywhere from 3 to 6 normal heart beats, then a series of double-beats (at least it felt that way) and sometimes a missed beat before the double beats started. This made me wonder if it was wise to take 2 at a time at bedtime. That was the only time I took it on an empty stomach. (I'd had some skipped beats several times before and my doctor did an EKG and said there was nothing radically wrong, that my heart was "tipped" slightly, but it did not show any sign of malfunctioning.)
Calling my doctor to ask his advice is an attempt at futility. I give the message to the "assistant" (or worse yet, try to explain it to an answering machine) and in a day or so she might get back to me. This second-hand treatment rarely seems to be satisfactory. And my next appointment is still 4 weeks away. I've had mild nausea most of the time when I take the Mirapex in the daytime.
I had been on clonazepam for over 3 years, (which had totally stopped the RLS symptoms) but it had lost its effectiveness in the past 6-8 months, and I wanted to get off the benzodiazepines anyway, so my doctor had given me Parlodel. It caused such severe incontinence that I finally went on the Mirapex. The incontinence stopped immediately.
Do you feel the Mirapex might be more effective if I took two at one time at night? It doesn't seem to last the full 24 hours. I'm getting very unhappy over the return of the RLS (though it is still not quite as bad as it had been before I took the clonazepam. However, it is getting worse every day.)
Though I wanted off the clonazepam because I didn't want to be on benzodiazepines, it is beginning to look better all the time. I've been off the clonazepam for about a month now and I don't know if it would be as effective as it had originally been.
Any suggestions would be greatly appreciated.
If you are getting side effects with Mirapex, it is better to take it mostly at bedtime, so that you can sleep. If the RLS bothers you during the daytime, you have the option to move or walk to relieve your symptoms. Also, the side effects tend not to bother people while asleep. It is hard to comment on the problem with palpitations, so you should check with your doctor about that problem. If you feel that
Mirapex has too many side effects for you, consider a trial of Requip instead. It sometimes works when Mirapex can't be taken. My advice is to stay away from Klonopin. You will likely get tolerant to this drug fairly quickly.
Sent: Sunday, July 30, 2000 7:09 AM
Subject: Painful legs and feet
I am taking Mirapex to help control my RLS symptoms. At times I have muscle pain in my calves and feet. After being in the car I experience stiffness and have difficulty walking for a minute or two. Is the muscle pain and stiffness caused by RLS ? I am 63 years old and have had RLS almost all of my life. The restless legs and pain have been more severe in the last three years. My mother had RLS and my brother and sister also have it.
Thank you for answering my question,
The muscle stiffness after sitting a while is a common problem that has nothing to do with RLS. Many people without RLS have this problem, so you should not blame your RLS for this other leg problem.
Sent: Sunday, July 30, 2000 2:04 PM
Subject: Restless Leg Syndrome
After reading several letters at the RLS website, I feel that, finally, here are people who really understand how I've suffered from this on and off since I was about 6 or 7. My earliest recollection is of getting out of bed and sitting on the edge of the bathtub, dangling my legs in tap water as hot as I could stand, trying to settle my "jumpy legs". When you're that age, you don't even THINK of hot water bottles! What I didn't know until a few years later was that my father was most likely upstairs at that time, walking the floors with HIS restless legs!
I was told by the doctor that it was just "growing pains" and would go away when I had finished growing - NOT! The restless legs would alternate with painful cramps in my calves - not charley horses, but a burning pain inside my muscles. I began my own research and came to the conclusion that on the days when I was was VERY active (I was a normal, active child and have been an active adult), I would get the leg pains. When I was not very active, I'd get the restless or "frantic" legs. With the painful legs, a hot water bottle helped, but with the restless legs, I couldn't keep my legs still long enough to get any benefit from a hot water bottle.
When I was about 17, I mentioned to a friend in high school that I was going crazy with jumpy legs. She said that her father, Dr. Copp, had done research at U.B.C. with dogs on that very thing and had discovered it had something to do with inefficient use of calcium by the body! I then experimented with drinking milk at different times throughout the day/evening. I found that I usually can't drink milk late in the evening.
Just recently, I saw a program on T.V. that recommended filling a bathtub about an inch or two with very cold water and walking back and forth in it - or walking around on a cold tile floor. AHA!, I thought, my father was instinctively doing the right thing all those years ago with his nocturnal floor-pacing. I have also heard that it has something to do with poor circulation. It seems that my father and I are the only ones in my family who had or have varicose veins. This is notable, a I have 5 brothers and sisters. No, I didn't get the varicose veins when I was pregnant with either of my two children, but later - in my 40s.
One last thing, my father passed away at the age of 72 (seven years ago) of ALS. As this is neuromuscular disease, I wonder if the Restless Legs are an early symptom. I certainly hope not, but all family history is so important when considering that 10% of ALS cases have been connected with heredity. If anyone out there has a similar background or experiences, it would certainly be worthwhile to contact your local ALS society.
There is no known relationship between RLS and ALS. We will post your letter and see if others have any comments.
Sent: Tuesday, August 01, 2000 2:10 PM Subject: Xanax
I've taken Xanax for about 4 years now for RLS. This summer I slowly tapered off my dosage down to .25 mg (I had previously taken 1mg.) My reason for this was that I felt that the long use of Xanax was causing my sex drive to slow down. While on Xanax I rarely would wake up with erections as in the past. I have found that .25 mg. has helped with this and yet controls my RLS.
My main question is this: Will the prolonged use of Xanax, even with regular drug holidays, cause any long term effects such as organ damage etc.? I don't have any problems with continuing the use of Xanax but don't want to cut my life shorter either.
Also, do other men (I am 42) ever report that Xanax effects their sex drive? Just curious.
Your web site is great. Thanks so much!
Xanax is an extremely safe drug even when used for prolonged periods, such as in your case. The major concern is developing tolerance and addiction, which is unlikely to happen in your case as you have already passed the test of time (which is the best test to predict who will get this problem).
Xanax does not cause any organ damage. The decreased early morning erection is likely due to the decrease in REM (dreaming sleep) sleep which may be associated with benzodiazepines. The early morning erections are in part caused by REM sleep, so decreasing REM sleep may decrease these erections.
Any sedative can cause a decrease in sex drive due to the obvious effect of sedation. Lowering the dose should fix the problem, which it did in your case.
Sent: Tuesday, August 01, 2000 1:34 AM
Subject: sleeping problems and Melatonin
Ive been reading you column and find some interesting and useful thing. I have write you coz I also have problem sleeping and once I fall asleep I usually wake-up after 2 to 3 hrs. I been advise by a friend to take Melatonin 3mg a day, so I did it helps me initially but I find itof no use lately. I just want to ask if theres side effect of using it for a long period of time? or how low must I use it? do I have to increase the dosage? Can you recommend any safer pills that would help me.
Thanks and regards,
Melatonin may help some patients with insomnia (even from RLS). The medical studies have been mixed. Some show benefit and some do not. It can be very confusing even for sleep specialists.
The recommended dose is 1-3 mg, but trial and error is necessary. I would not recommend using higher doses than 3 mg. The long term safety of this drug is not really known, which is why the American Academy of Sleep Medicine is very cautious about recommending this drug.
Check with your doctor about correct sleep hygiene or prescription medication such as Ambien.
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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