If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Date: Sunday, February 07, 1999 10:12 PM
Subject: Upcoming Cataract Surgery
I have had RLS for over 20 years; been on medication for 15 of them. At the present time I take 6 Sinemet CR (50/200) tablets per day, around the clock; every 4 hours. This still does not prevent me from having the jerking sensation anytime during the day or evening. Some days are worse than others. There is no warning of when I will have a spell; mostly in the late evening, but lots of time in the early morning or afternoon also. I have managed to live with this and have tried the following remedies which help
Take a hot bath for 1/2 hr to l hour.
Sleep on my stomach and twist my ankles Riding in a car I will sit on my knees facing the rear of the vehicle.
Walk on a tread mill until relief is obtained I have tried to associate anything that could cause an attract, even keeping a calendar, but have come up with nothing.
My concern at the present time is that I am having cataract surgery and I am afraid that I will have an siege. There will be a lens implant and done as an outpatient at a local hospital. My doctor didn't seem too concerned, said to talk it over with the Anesthesiologist, but as yet haven't been able to talk to one. I have found that most doctors do not know what RLS is and what it does to a person or how to control it.
I am quite concerned,
If you are already on such a high dose of Sinemet (the equivalent of 12 of the 25/100 tablets) it is extremely likely that you have augmentation and rebound from the Sinemet. This generally occurs above 2-3 of the 25/100 tablets per day. You should consider changing to Mirapex, Requip or Permax.
It also sounds like you have RLS and PLMD (the leg jerking). There are other medications that the anesthesiologist can use to help the RLS. Opiates and sedatives can be given intravenously and will take care of any RLS quite effectively. The leg jerking (PLMD) is not helped by opiates and may be helped variably by sedatives. Most good anesthesiologists would be more than happy to meet with you prior to surgery to discuss any concerns that you may have about your upcoming operation.
You can bring along a copy of our RLS Treatment Page to help your doctors to understand better your RLS problem and its treatment.
Date: Monday, February 08, 1999 7:33 AM
Thank you for your website! I looked up RLS after having a terrible bout of it last night. After looking through the letters, I realized why last night was so bad. I suffer from this disorder periodically. I have no pain, just the "heebee jeebees" type sensations in my thighs.
I recently had a severe allergic reaction to a sulfa drug prescribed to me for a sinus infection. The doctor then told me to take Benadryl, an antihistamine, and prescribed to me prednisone to get rid of the rash. One letter on your site said that antihistamines aggravate RLS, but another letter hailed the success of calcium for RLS.
Very interesting, because I was taking a lot of antihistamines, and when I was suffering last night, I remembered hearing that calcium can help with the problem. I got up and took 2 Tums calcium antacids and the RLS symptoms went away!!! I think calcium is the answer folks!
I think taking prescription drugs that could be damaging to the body is dangerous. I truly believe that doctors overmedicate people, with little concern about side affects. There are so many natural remedies for things that people take drugs for. Search out a good homeopathic doctor or go to a good book store and buy one of hundreds of natural remedy books by the better doctors!!!
Good luck to all of you out there!
Mary F. in Illinois
We also encourage patients to try other than prescription medication. Often, stretching exercises, and many of the homeopathic treatments may be helpful for mild and possibly moderate RLS.
For patients with severe RLS, life can be utterly miserable and for most of these patients homeopathic treatments will not be helpful. Medications (despite all the possible side effects) are definitely the lesser of the two evils. In these cases, medication can truly be a lifeline and make it possible to let these patients live a normal life.
Date: Monday, February 08, 1999 11:14 AM
Subject: Sleep study
I just received your book--2nd ed. I know you're very busy, but I also know that we all want you to keep things like the books coming.
I did get off the Klonopin--it was not as hard as I feared--and so had the sleep study.
It showed no significant PLMS, even though the report said that I have a history that strongly suggests it. The principal finding was abnormal sleep architecture; REM latency was extended at 179 minutes and stage REM sleep was reduced at 5% of total sleep time There's more, of course, but the conclusion seems to be that I have a reduced sleep efficiency index of 60%.
The neurologist prescribed 1.0 mg of Klonopin (I should point out that I can't take Ativan or Xanax because they make my eyes very painful and teary, plus this doc. really loves Klonopin) and 25 mg. of Trazadone, to be very gradually increased to 150.
The doctor hasn't really explained why an anti-depressant. When I asked him if he thought I was depressed (and I assured him that I wouldn't mind if I were) he said that I'm not.
If the Klonopin works fine for long periods of time, then not to worry. There are many other sedatives/sleeping pills to use such as Restoril, Doral, Prosom, and of course one of our favorites, Ambien.
Trazadone is an antidepressant that has strong sedative side effects. It thus has the dual role of promoting sleep and keeping your mood up.
Date: Wednesday, February 10, 1999 1:35 PM
Subject: EEG training/biofeedback
I'm reading studies of EEG feedback training being helpful for seizure disorders and reducing epilepsy episodes. Have you heard of anyone exploring this avenue with RLS?
What is your conjecture on the dopamine connection? Are we releasing too much dopamine at the wrong time of day?
EEG feedback may help seizure disorders as abnormal EEG patterns can be associated with seizure activity. If you can learn to control the abnormal brain waves, then you can abort (hopefully) the impending seizure. The problem is that with RLS, there are no known EEG abnormalities, hence there are no brain wave patterns to use in EEG feedback.
The dopamine connection is not understood at this time. Dopamine like medications improve RLS, therefore it is not a matter of releasing too much dopamine, but possibly not releasing enough. However, unlike patients with Parkinson's disease who also benefit from dopamine, there is no demonstrable lack of dopamine in the brain of RLS patients.
Date: Thursday, February 11, 1999 11:07 AM
I am so grateful to read everyone's stories about their affliction with RLS. I have a little boy who I think has this syndrome. His first occurrence was when he was only 6 and we did take him to a pediatric neurologist. Does anyone think they started having this problem at a very young age?
The doctor has prescribed Tegretol which is an anti-seizure drug. Has anyone tried it? It works pretty well, but I have a terrible feeling we may have to keep increasing the dosage as time goes by.
Also, and this could be because he's so young, but when he gets it bad it becomes almost a panic attack as well. He gets very frightened and emotional and, needless to say, his father and I get very distraught at being so helpless in calming him down. Any suggestions?
Sally in Indianapolis
RLS has been documented at very young ages (usually associated with PLMD, but it does not have to have PLMD). Many of our older RLS patients state that they have had RLS symptoms for as long as they can remember.
Sedatives and Permax have been used in studies for treatment of RLS. Tegretol is a drug that works in a minority of RLS patients, but if it is working well in your son, then it is fine to use. If he does need more medication, then you may want to discuss other RLS drugs with his doctor.
Date: Thursday, February 11, 1999 5:45 PM
Subject: Drug testing.
I need to know how many if any have had drug testing for a job and had it come back positive due to the fact that medication (s) are being taken for RLS. This has happened to a one of the members in my group. Any response will be appreciated.
Southern Nevada RLS Support Group Leader.
The opioids are the only group of RLS medications that might be result in a positive workplace drug test. This is because heroin is an abused street drug that is in the opiod family. If anyone on an opiod has drug testing done, all they need is a note from their doctor indicating that they are on the drug.
Date: Sunday, February 14, 1999 7:01 AM
It was comforting to know this "thing" has a name, other than another affliction I contributed to maternal family genes. My mother has suffered with (what I now know to be RLS) for years. I too, first noticed it with the pregnancy of my third child (I was 35, I am now 41).
I noticed in some of the letters, people attribute the symptoms to Summer heat-well I'm in Michigan, it's currently 20 degrees, and I get the "driving me nuts" feeling in my left leg every night while sitting on the couch relaxing about an hour before bedtime. I have taken aspirin, walked around, massaged my leg, you name it.
Fortunately for me, right now it's only one leg, and the aspirin seems to help me sleep. I do not know if I kick in my sleep, my husband has not mentioned to me that I do! I was very glad to find your sight, I just happened to type in "restless leg" for lack of a better term, and lo and behold there you were!
I hope someday you find what causes this affliction for many-because if it is in fact hereditary, I hope by the time my children may possibly get it, I'll have an answer for them!
If your symptoms do get worse, please rest assured that you should be able to find medication to treat your condition. Hopefully, by the time your children get to the usual age when RLS starts to be bothersome (although many note that their RLS started at very young ages), there may be better understanding and treatment of this disorder.
Date: Sunday, February 14, 1999 8:30 PM
I am trying Mirapex 0.25 mg; 1/2 tablet at noon and a whole one at bedtime, along with 1/2 Klonopin (0.5 mg) also at noon and one and a half at bedtime. The above dosage worked fine for the first 3 days, but tonight I was so uncomfortable that I ended up taking 1/2 tablet of Sinemet CR 50/200. Is that a problem and am I courting disaster?
There is not a great problem in taking Sinemet CR with Mirapex as long as the Sinemet dose is kept at a low dose (no higher than the one 50/200 mg tablet that you are already taking). It is however, much simpler to use only one Parkinson's disease medication at a time and thus we generally try to stick to Mirapex alone.
Your Mirapex dose is still reasonably low, so, as long as your doctor agrees, your dose could easily be increased slowly by another tablet or so.
Date: Tuesday, February 16, 1999 8:16 AM
How much Permax can safely be taken each 24 hours? I take the .05 mg tablets-usually one an hour before bed with Tylenol with codeine and Xanax and another one middle of the night with Tylenol with codeine. Sometimes I need one early evening, and also early morning. Would four tablets this strength be okay?
I have a difficult time taking drug holidays. Can something be substituted for Tylenol with codeine and for Xanax on their holidays.?
Permax can be taken up to 1.5 mg per day for Parkinson's disease patients (that is almost 8 times the dose that you are taking). Most RLS patients need between 2 to 4 of the .05 mg tablets per day, so you are doing just fine at your current dose of 3-4 pills per day.
Many patients have problems with drug holidays. It is always best to be completely drug free of the class of medication for which the holiday is being done. If this is not possible, then there is a second best way to do this that works well for most.
Ambien can be used for the drug holidays for Xanax and Ultram can be used for the drug holidays for Tylenol with codeine. Both the replacements medications may work on different receptors (we are not completely sure about this) which is why they seem to work well for drug holidays without causing tolerance and addiction problems for most patients.
It is also a good idea to take a drug holiday on only one drug at a time. In your case, one weekend you would stop the Xanax, and on the other you would stay off Tylenol with codeine.
Date: Tuesday, February 16, 1999 1:36 PM
Subject: I love this site!
I began having problems with RLS when I was pregnant 14 years ago. Since then I've been diagnosed with 3 autoimmune diseases, one of which is Myasthenia Gravis. Back in 1994 I complained about being sleepy most of the day so I was sent to a sleep disorder clinic. The report was basically that I "kicked" all night long. I don't remember the exact number they counted but I do remember thinking WOW, no wonder I was tired all the time. The doctor suggested I drink tonic water. I tried the tonic water but soon found out I was pregnant again a short time later and was advised to discontinue drinking it.
About 6 months ago I started a new symptom. At night, just as I'd lay down to go to sleep my whole body would begin to jerk...nothing was left out - arms, legs, toes, fingers, neck. This was not the halfway-asleep-stepping-off-the-curb-jerk, these were almost electrical shocks. They began within about 2-3 minutes of closing my eyes - every night. Some episodes were more "violent" than others and I believe that depended on how exhausted I was physically.
Then a new sensation started a month or so after these jerks. This sensation seems to actually be a brain jerk?? When I hear particular "sharp" noises my brain seems to jerk. High pitched beeps, sudden quick noises - they don't even have to be very loud. If someone slams something down in another room my brain jerks. These are lightening fast jerks too.
So I had an MRI and head CT - normal except for C 5&6 disc space narrowing which I'm sure isn't related. I'm also now on Permax (3 of the .05 mg tablets at bedtime). Permax does not seem to be helping anything except it makes me very sleepy and I'm not hungry anymore - good combination.
I'd like to find out if there is some other type of test that would show my brain activity or brain waves when I hear these sounds. Is there such a thing? To activate this brain jerk all I have to do is push the "on" button on my portable phone and here the BLEEP and zing goes my head.
My doctor seems to think this is all related to RLS. I haven't read anything similar in all the other letters. I'm also having some cognitive difficulties - grasping for words - normal regular easy words that completely escape my mind for long periods of time or until someone fills them in for me. I'm only 34 and this is depressing. My neurologist toyed with the idea of "collagen vascular disease" but I'm not finding any similarities in that one either.
Your symptoms of "Brain Jerks" does not sound like anything that I have heard before. Although it is possible that it could be some sort of RLS variant, it is more likely that it is not related to RLS. I have heard the symptoms of thousands of RLS sufferers and have yet to hear something similar to your "Brain Jerks".
Date: Sunday, February 14, 1999 10:14 PM
I'm not sure if I have RLS. My symptoms are located in my lower back, my upper right buttock, and my right leg down to my knee. The sensation starts approx. 20 minutes into my sleep. Although I feel a pressure in my back most of the time during the day when I go to sleep the pressure seems to be high in my buttock.
Sometimes I can feel a sensation that moves through my leg down to my knee and I involuntarily kick my leg. It never goes away until I get up for 1/2 an hour or more. I have tried inversion boots and sometimes they work but I can count on both hands how many nights I've slept since before Thanksgiving.
Does this sound like RLS? I used to get a jerky leg when I was younger in the same leg when I went to bed but was able to get up and stretch it out. It was usually when I was heavy duty exercising. I don't do that anymore.
The leg jerks may be PLMD. The sensation that goes down your back, buttock and right leg sounds more like sciatica than RLS.
Date: Thursday, February 18, 1999 10:24 AM
Subject: Estrogen Replacement Therapy
I have RLS and have been on estrogen replacement therapy for the last 2 years. I would appreciate any comments on the effect this may have on RLS.
RLS can vary considerably with menopause and with estrogen hormonal replacement therapy. Some women get worse with menopause while others get better with menopause and then worsen with estrogen replacement treatment.
I have an ongoing survey on RLS patients to help determine the answer to your question. The results (as I have detailed above) have been quite mixed so far.
Date: Sunday, February 21, 1999 5:40 AM
It's so nice to have found your site!!
I have been to several doctors, 2 being neurologists, who have been unable to explain why I have pain in my legs. I was telling a Nurse Practitioner friend about this today and she said "It sounds like you have restless leg syndrome". Being an NP myself I had heard of RLS but knew very little about it.
So I went to the net and found your site. After reading many of the letters I am convinced that I have had RLS for a number of years but only recently has it progressed to chronic leg pain. I remember as a child at school I always had my legs crossed and was swinging whichever one was on top very rapidly. And as I got older when I sat for any period of time I had to be constantly changing the position of my legs, crossing and uncrossing, sitting on them, elevating them. And when my legs are still I am constantly twitching my toes. I have a teenage daughter now and it drives her crazy when we are sitting in a movie theater together!!
As mentioned in a letter by Susan P., I also notice a problem with irritable bladder symptoms when my legs bother me.
I would like to know if there has been any correlation seen between living in a house with tile floors over concrete. My neighbor and I both have these floors and she was told by here chiropractor that it was the reason why she was having leg pain (which started during or soon after her pregnancy).
Also I wonder if anyone has a problem with itching. I am taking Ultram 100mg 3-4 times a day which helps tremendously with my symptoms. I have recurrent problem when I lay down to bed or when I waken during the night, with itching all over. I lay and scratch for a few minutes then go to sleep. I have wondered if this is from the Ultram, related to RLS or neither. I don't itch during the day.
Any readers who would like to share info please e-mail me.
Thanks for any feedback,
Carol from Florida.
Itching is a very common symptom, which can occur from a multitude of causes. It is generally not related to RLS. Walking on hard floors is also not a cause of RLS (as far as we can tell).
Ultram is a very good medication for RLS, but very few RLS patients need it more than once or twice per day. You might want to discuss getting on a Parkinson's disease medication such as Mirapex with your doctor. This would very likely help you get off or decrease the Ultram.
Date: Sunday, February 21, 1999 11:54 AM
Subject: are my symptoms RLS?
I have recently seen my internist for problems that I have been having for years with my legs. He suspects that I may have RLS. I had never heard of RLS, and this web page came up when I did a search engine. I am a native Californian, but I am living elsewhere at this point. After reading this page, I am almost 100 percent sure I have RLS. My doctor gave me an anti-Parkinson drug to help, but before I took it, I wanted to see if I felt like I had RLS before taking the drug.
My sister and I have the same exact symptoms since we were both young children. We will wake up in the middle of the night with severe leg aches in our knee and ankle joints. When we were kids, the doc said they were just "growing pains" and to drink lots of milk because we may be calcium deficient. This worked for a while, but it never works for long. We also have the incredible urge to shake our legs. I am almost constantly shaking mine. I cannot fall asleep without shaking my legs, and I find myself shaking my legs when at the computer, at my desk at work, ANYWHERE where I am just sitting. I just thought for all these years that it was a habit of mine. I do not have the "prickly, worm-crawling" feeling that some patients have described on this page associated with the leg shaking. We also will awaken in the middle of the night with what is known as "Charlie horse." We have watched for any patterns that may make our symptoms worse, and are unable to come up with anything.
Relief: Ever since childhood, the following have helped me find relief:
For leg shaking: nothing at present. I will try the drug my doctor gave me and hope that it works.
For leg aches and cramps: upon waking (usually in the middle of the night) from pain, I take 800 mg ibuprofen. If awake, my husband will massage the joints in my knee and ankle. Meanwhile, I turn an electric blanket to "high" and wrap the affected leg(s) tightly with the blanket after my massage. The heat brings relief almost immediately, but the pain usually takes about 45 minutes to dissipate, and at such time, I can safely remove the electric blanket from my leg(s) and the pain will be gone.
Can someone please tell me if this sounds like RLS to them? Maybe a doctor or someone with the same symptoms can tell me if this is the case? Thanks for all your help.
The "Charlie Horse" like problem does not necessarily sound like RLS. Your other symptoms of discomfort in your legs that needs movement to be relieved does indeed sound like RLS.
Try the Parkinson's disease medication (hopefully one of Permax, Mirapex or Requip) and see if it helps you. RLS is very common in family members.
Date: Tuesday, February 23, 1999 11:50 AM
What a relief to find out this bizarre leg thing has a name. Too bad so many people suffer from RLS. Like so many others, I have not been able to put a name to this problem until recently. I have described this problem to various doctors at different times, but they said it was cramps and I just needed to stretch my legs before bedtime.
I talked to my doctor about new found discovery (RLS). He was unwilling to prescribe a medication.
Is there a relationship between Depression and RLS? If so, Why?
To help your doctor learn more about RLS and take it seriously, please feel free to copy our web site information (or get a pamphlet from the Restless Legs Syndrome Foundation, Inc) and give it to him.
RLS is a chronic disorder which may rob you of sleep. Any chronic painful disorder (arthritis for example) will have a high percentage of sufferers who end up being depressed and RLS is no different. Many RLS sufferers end up depressed, until they receive proper treatment for their problem.
Date: Tuesday, February 23, 1999 2:05 PM
I have read articles about RLS, I have tried just about everything you have suggested to help me deal with the symptoms, and it does not seem as if anything helps. I have moved from muscle relaxants in the "Pan" family to prescription sleeping pills; sometimes I have to take 30 a night just to sleep thorough.
The problem that I am encountering is that the symptoms do not stop. I "run" all night long. The pills help me fall asleep, but I do not stay asleep. I wake myself up with the level of activity that I go through nightly, and I often wake up with sore muscles, aching shins and exhausted. I average 3-5 hours of sleep a night, sometimes more, sometimes less.
It seems there is a cycle, but I have not pinpointed exactly what the pattern is, except that I often go for weeks with approximately 3 to 4 hours of sleep a night, and then my body "crashes". My doctor and I can't seem to hit the right solution. I try to keep active when I wake up. I keep sleep diaries and I've changed my eating patterns. Any suggestions would be appreciated!
I feared that the sleeping pills would become addictive so I have tried to break myself from taking them. If I don't take at least one, I don't sleep at all. I have spent many nights running, tossing and turning and watching the clock...it is so frustrating!
If I sleep in the same bed as my boyfriend or anyone else, I worry so much for their welfare because of my motion that I don't sleep then either. I thought the security of another person might help, but it only makes it worse. I also have bad dreams on a fairly regular basis, what I used to call my "night terrors" until I recently discovered that there is a sleeping disorder of the same name. I do not know if the dreams are related to the problem, but I do know that night time is a very difficult experience for me. .Even if I nap I run!
Sleepless in LA
It sounds like you have PLMD (Periodic Leg Movement Disorder) and not RLS. PLMD is the leg jerking movements that occur at rest, but even more so with sleep. Each leg jerk may result in a sleep arousal (going from deep sleep to light sleep or even awake) and destroy the quality of sleep, such as in your case.
RLS, which is very often (about 85% of the time) associated with PLMD, is a separate disorder in which one feels very unpleasant sensation, such as ants crawling up the inside of one's legs, whenever one is resting or trying to sleep.
The muscle relaxants rarely help in PLMD/RLS, as you have already found out. Sedatives, do help people fall asleep, and often will blunt the arousals from the leg jerks, but do not actually significantly decrease the amount of leg jerks. Addiction can be a problem with sedatives, and you seem to be somewhat dependant on them. Taking more than one or two sedatives per night is quite dangerous, and 30 is considered in the overdose range. It would be better for you to be completely off of this class of medication.
The best medications are the Parkinson's disease drugs, such as Mirapex, Requip or Permax. Discuss using these drugs with your doctor, as they have a good chance of decreasing the actual leg jerks and thus helping you get a normal night of sleep and not bother your bed partner.
Date: Wednesday, February 24, 1999 2:17 PM
I'm a 48 year male not from California, but from Alberta Canada, but I thought I could add my 2 cents worth any way.
I can remember aggravating my mother when I would squirm while sitting on her lap. She and Dad always said it was growing pains, but I ain't growin' no more and they are still here.
It has been compounded by having sit down jobs for a lot of my life. The problem was partly due to over "worked" butt muscles. The answer is to massage the muscles and who better to do that than my life-long companion, my wife. Since she gets too tired using her hands she sits on our bed and massages with her feet. A bit strange but what the heck, it works. I have also gone to professional massage therapists and that works great too.
Hope this is a help to someone,
Date: Thursday, February 18, 1999 10:40 AM
I couldn't sleep at night because of pains in my legs and my legs just wouldn't stay still long enough to sleep. My doctor prescribed CARB/LEVO 10-100 . I take one at bedtime and I haven't had any trouble since. For me it is wonderful !
This is very good treatment as long as you stay under 2-3 of the Sinemet (carbi/levodopa) tablets per day. If you eventually need more, Mirapex or Requip are better choices.
Date: Friday, February 19, 1999 1:12 PM
I have had RLS for some time and finally found a valerian root product called Silent Night and it seems to work quite well. Tried just plain valerian root but did not work.
I can now sit and watch TV at night and sleep much better. My wife also gets more sleep as I do not turn constantly during night. It is worth a try as the discomfort can be almost unbearable at time.
Date: Saturday, February 20, 1999 3:06 PM
Subject: Long time RLS sufferer
I am a 43 year old male from Virginia and I have had severe RLS since I was 9 years old. I remember actually pounding the sides of my knees with a hammer because they would not let me sleep at night.My parents just said it was " growing pains".
I also remember getting dressed and going outside to run laps around the neighborhood at 2 a.m. when my legs would jump and move by themselves at night. The symptoms have gotten worse as I got older. I sometimes get the symptoms during the day. I have never taken any medication for it but I do the following if I feel my legs starting:
Stretch my leg muscles(esp. the hamstrings and calves)
Take calcium (I take 3 or 4 Tums)
The symptoms occur more frequently when I don't get any exercise. If I don't drink at least one large glass of milk during the day, I know the RLS will hit me that night.
I hope these tips will be helpful to some fellow sufferer.
Date: Wednesday, February 24, 1999 3:56 AM
Subject: Restless legs
Hi, I am a 53 years Australian woman who has RLS. I believe I have it at a chronic level. The symptoms change over time. First it was that I would awaken after 90 minutes in bed, presumably asleep, with the uncontrollable urge to move and kick my legs.
I found that walking about and having a hot bath with magnesium and lavender oil helped. I would return to bed and sleep. It has now got to the stage where I simply do not get to sleep until 4 or 5 am because I get aches, in my calves or knees, or feet. It is a nagging pain which persists sometimes all night and I am forced to get up and got to work with as little as two hours real sleep.
Its recent onset in December 1998 coincided with the date of onset in December 1997 almost to the day. It seems to be taking a similar course. I am now taking a variety of medications including magnesium and phosphate cell salts, dolomite, valerian, aspirin, an anti-inflammatory similar to ibuprofen, lavender baths, heat packs for my lower back and relaxation tapes.
I am so exhausted I find it quite difficult to cope some days. I heard today that melatonin could be helpful. I spotted an article on the net which critiqued the use of melatonin on the grounds that is contributes to SAD (Seasonal Affective Disorder or Winter Depression). Without knowing the symptoms of SAD I cant comment. My financial resources are somewhat limited. I have found that frequently goods and services are cheaper in the United States than in Australia.
What suggestions could you offer me?
You are probably spending a lot of money on over the counter remedies which although sometimes helpful for a minority of patients, are clearly not helpful for you. You have an excellent chance of getting relief from the Parkinson's disease medications such as Permax (older, so it may be cheaper), Requip or Mirapex.
It may be helpful to copy the information on our web site to help your family doctor treat you, which may be less expensive than going to a specialist.
A Reply from Christobel
Date: Friday, February 26, 1999 12:12 AM
Subject: Re: Restless legs
Thank you for your quick response: I have not yet explored the possibility of Parkinson's Drugs. Last time I had this (12 months ago), I took clonazepam. I had some yummy sleeps, but the drug adversely affected my memory. This time I have chosen to keep my memory, although concentration is not at a premium!
I will make an appointment with my General Practitioner. But I suspect I may know about than she does! I have printed out much of the material on your site regarding cause, symptoms and treatment. Australian doctors tend to be very conservative. At least that is my impression...
Thanks again for your interest. I will take your advice,
If you have trouble getting the Parkinson's disease medications (again, Mirapex, Requip or Permax, not Sinemet which is generally the first but wrong choice of most non-expert doctors), then a sedative to help you get sleep is not a bad idea.
Klonopin (clonazepam) is not our favorite choice for a nighttime sedative. It lasts very long and causes daytime sleepiness and could easily result in memory problems. Melatonin may be helpful in selected cases. I do not know if there is any link between SAD (Seasonal Affective Disorder or Winter Depression) and the use of Melatonin.
Ambien (zolpidem) is a short acting sleeping pill that rarely causes daytime problems and should result in a good night's sleep without side effects. Xanax is another choice for a good night's sleep.
Another Reply from Christobel
Date: Saturday, February 27, 1999 7:16 PM Subject: Re: Restless legs
Thank you again for your quick response. Yesterday, I did get to see my GP who prescribed Sinemet but only in the short term. I am to see him again in a week for an update. I showed him a copy of our correspondence in which you suggested Permax, Requip and Mirapex. I also copied the info from your RLS/PLMD Treatment Page in which Sinemet is discussed; in particular the discussion about augmentation/rebound.
I have agreed to seek an appointment with a neurologist. Unfortunately this could take time because I am not privately insured (private insurance in this country is very expensive for those who are unemployed as I am). In the meantime, it looks like Sinemet. I took my first tablet last night and did actually get to sleep, but it took 4 hours to get there!
Thank you for your support - it is very welcome.
The Sinemet can be alright for RLS as long as you keep the dose at no more than two of the 25/100 tablets per day.
Another Reply from Christobel
Date: Sunday, February 28, 1999 11:20 PM
Subject: Re: Restless legs
I have had two nights of SLEEP! the label describes the drug as SINEMET - M 100/10m which refers to 100mg levodopa and 10 mg carbidopa. Today I successfully made an appointment with a neurologist for 23 March; I look forward to that date.
Last night I actually tried taking half a tablet, but I awoke at 4.00 am. I could feel the sensations there 'in the wings' so I took the other half and slept until 0800 am. I guess I shall have to stick to the full tablet. I would really love not to have to take drugs.
Thanks for your interest - I feel validated. So many people believe that this condition is a mind over matter thing that can be cured by controlling the mind. I wish that were so.
PS. Do you know of any support groups in Australia?
As long as you stick to one or two of the Sinemet 10/100 (or 100/10 in the land down under) don't worry about using Sinemet.
Here is the list of support groups in Australia: AUSTRALIA Cronulla/Sutherland Elaine Booker 02-9543-1737 Sleep Disorders Australia Beverley Yakich 02-9415-6300
Date: Thursday, February 25, 1999 2:15 PM
Subject: Serum ferritin level test
First a little history:
I've had problems with sleeping and daytime tiredness since my teens. I went to the doctor several times over 10 years and they would run a thyroid test and say nothing was wrong. In the last year these problems got bad enough that I was having trouble functioning most of the time. I had a sleep study run 5 months ago which came back inconclusive, mostly due to the fact that I only slept 1.5 hours out of 8.
I have never experienced daytime symptoms of RLS. After seeing a neurologist I was put on antidepressants (surprise, surprise) but more importantly I forced myself to get on a schedule of getting in and out of bed at certain times and not taking naps. Once I was having some success of sleeping during the night, I hooked up my video camera to record my legs throughout the night. After watching the tape and reviewing everything I could on RLS it was easily apparent that I had PLMD. My neurologist agreed and put me on Sinemet CR 25-100.
Now my question:
After reading your section on "Iron Therapy" I asked my doctor if he would have a serum ferritin level test performed. He said that as my CBC was mostly normal, (WBC-3.7, RBC-4.93, HGB-15.6, HCT-46.2, MCV-94, MCH-31.7, MCHC-33.9, Platelets-205, Neut-51, Lymph-36, Mono-11, EOS-2, BASO-0, RDW-12.3) he could not justify having the test run. I hate taking medicine and would love to just take an iron supplement and try to get off the Sinemet in a few months. That being said, and with the CBC numbers, should I continue to pursue the serum ferritin level test issue? Can an individual go to a blood lab and request to have this test run and pay for it out of pocket? If so any estimate to the cost?
I realize that this was a little long winded, but after years of saying "I just don't have the energy." and being called "Lazy" I'm very excited about the prospects.
Thanks for you time and the role your sites' played in this issue.
Even with normal CBC levels, the serum ferritin levels can be decreased. Most doctors will think that they need a diagnosis of likely anemia to justify ordering this test, but the diagnosis of RLS/PLMD should be able to justify a serum Ferritin.
The cost of the test can vary with different areas. Your physician can order any test for you (if he feels that he cannot justify it medically) if you agree to pay cash for it and not have it covered by your insurance. You do not have to go to a medical lab for the test.
Date: Thursday, February 25, 1999 6:17 PM
Subject: Calcium Therapy
I am a 47 year old female who has been bothered by Restless Leg for the past few years without ever realizing that there was something wrong! I thought my twitchy legs had to do with an old ankle injury I had 10 years ago, or else just my general ever-present state of fatigue. The constant fatigue and increasing snoring led me to have a sleep study done. That result came back positive for sleep apnea and also nocturnal myoclonus. I had no idea what that was! I ended up reading everything on your web page after I realized that I get the restless leg feelings all during the day, not just at bedtime.
Reading all the different stories and treatment options really scared me. Too many heavy-duty medications! I had just gotten off Paxil which I now feel complicated the situation - at least for my leg problem. Then I came across a letter from John L. in Regina, Saskatchewan, Canada (12/15/97)regarding calcium, magnesium and zinc therapy.
So I thought I'd give that a try first before hitting my doctor for more potent medications. And you know what? IT WORKS! I have been on this regimen for 2 weeks now and the twitches have about 95% disappeared! I take his prescribed combination after dinner and can now sit at my computer to write this without discomfort,watch TV later and then fall asleep with no leg-jerking! And I know that all that calcium will benefit my bones in the long run, too!
Thank you, John L., if you're out there. I will continue the calcium/magnesium/ zinc therapy and try to spread the common sense approach to this crazy ailment.
Date: Saturday, February 27, 1999 7:05 PM
Like so many of your writers, I was so glad to find your site. I thought I was a nut case, but now I know I really do have a real medical condition. I am eager to try some of the remedies suggested. I am female, 47, and have had bouts of RLS for a couple of years.
I have some questions. I suffer periodic bouts of severe itching in my legs. It usually happens right after I shower. Sometimes it is so bad, I scratch until I bleed. I often get a stomach ache and feel shaky for a couple hours afterwards. I tried to tell my doctor about it once but she just assumed it was caused by dry skin. It's not. When I have a flair up, I avoid showers. (I don't itch when I take baths!) Could this be related to RLS?
Second, my blood work indicates an elevated SGOT (80) for the past couple of years. Could this be related?
Thanks for being there for me!
Itchiness of the legs is not usually associated with RLS. The RLS sensations generally occur inside the leg, not on the outside of the leg. It is not uncommon to have patients without RLS who complain of leg itchiness. It is often very difficult to discern the cause of the itchiness.
Does the leg itchiness occur at the same time as the RLS bouts?
The increased SGOT of 80 is a mildly elevated value, and is unlikely to be related to the RLS or itchiness. It should, however, be investigated as it is an abnormal lab value.
Date: Friday, February 26, 1999 10:30 PM
I was officially diagnosed with RLS/PLMD in 9/97 at Hoag Hospital Sleep Disorders Center in Newport Beach, CA. I realize now that I have had it all my life; it is getting worse as I get older. I take Prozac for chronic depression. The Sinemet seemed to counteract the Prozac (I can live with the jumpy legs easier than the depression), and the Klonopin did not help.
I am a dental hygienist and recently saw a patient who has multiple sclerosis and was amazed at the remarkable reduction of her symptoms. She was getting worse, so sought for alternative therapies on the internet. She found the Entermed website, www.intergate.bc.ca./business/enermed/main.htm and pursued the treatment in Vancouver, BC. According to her, and clearly visible to me, her fatigue level has improved 95% and her cognitive skills are now sharp, after being in a "fog" for years.
By only reading about the non-invasive Enermed,I would have dismissed this device as "quackery." However, I have seen this patient for over four years, and was so happy to see her improved symptoms. She gave me a copy of the Enermed brochure. They make no claim for a cure, just to improve the symptoms.
The Enermed brochure says that the device is being used in Canada to treat only multiple sclerosis and migraine headaches. It might be helpful in treating sleep disorders and depression. I e-mailed the Energy Medicine Developments (North America) Inc. in Vancouver, BC at enermedatintergate.bc.ca . Fraser W. Lawrie, President of EMD, replied that until research is done on these other conditions, they will not treat them even when they are confident that the device might help.
They are registered with Health Canada for only the two conditions noted. I am interested in participating in a scientific study using the Enermed device to treat RLS/PLMD/Depression. Perhaps Hoag Sleep Disorders Center could do a study for the sleep disorders. Perhaps funding could come through Hoag, the RLS Foundation, &/or the Sleep Foundation.
There seems to be a large population in Southern California who might be available to participate in the study. What do you think?
Linda J. C.,
The Enermed device is a pulsed electromagnetic field generator which has been reported to help Migraine headaches and MS. It is very difficult to assess these disorders as they will very often wax and wane on their own without any treatment. Unless double blind studies are done, it is very difficult (to impossible) to separate out the placebo effect from any real effects of any treatment.
There are many other proposed therapies (see our RLS Treatment Page, Non-conventional Treatments section) that other RLS sufferers have had success with and are sure should be used on others and studied.
Date: Saturday, February 27, 1999 7:55 PM
Subject: RLS research
Does anyone have a clue about the causes of RLS? Is anyone working on it? Has anyone checked the normal dopamine levels of RLS sufferers? Dopamine decreases and RLS increases with age; dopamine levels normally fall at night when RLS symptoms are worse. Couldn't RLS sufferers have unusually low levels of dopamine or unusually large diurnal (night and day) variations in dopamine levels?
Since the adrenergic and cholinergic nervous systems antagonize each other, could there be a relation between RLS and an imbalance between these systems?
Is there evidence that the dyskinesia (abnormal limb movements) which sometimes results from chronic l-dopa use might be caused by free radical damage to certain areas the brain? If so, might antioxidant therapy be effective in preventing the dyskinesia?
The cause of RLS is still not known. Research is being done, but we have only scraped the surface of this disorder. Despite the fact that dopamine like agents can help many RLS sufferers, no demonstrable decrease in dopamine levels can be found, unlike Parkinson's disease patients.
We have also not found any evidence to support any imbalance between the cholinergic and adrenergic nervous systems in the body.
The dyskensia due to chronic dopamine agent usage seems to occur only in Parkinson's disease patients, not in RLS patients (no idea why, however).
Date: Sunday, February 28, 1999 6:44 PM
Subject: Re: RLS/PLMD
Thank you so much for your past responses & information (Feb. 3, 1999).
My doctor re-evaluated my situation and has put me on Neurontin. One to two capsules at night, plus .5 Xanax, 800 mg Motrin and I've added melatonin 3mg.
I'm not sure what works exactly but I'm finally getting and my significant other is finally getting, a night's rest. I still wake up 2-5 times, but it doesn't seem related to my legs and l'm not frustrated.
1. Do I need to take a " drug vacation" from Neurontin? If so, when &how long?
2. Is my combination above OK or overboard or counterproductive in any way?
You do not need a drug holiday from Neurontin. Your regimen does sound very reasonable, although I am not sure why the Motrin is prescribed for you.
A Reply from Kurt M.
Date: Sunday, February 28, 1999 8:32 PM
Subject: Re: RLS/PLMD
Motrin is for aches and pains from physical therapy - recovery from shoulder surgery in November 1998 and an overall "Wellness" program at therapy, I'm doing to lose weight and get back into shape. Plus I read in some literature that Motrin has had some relief in RLS/PLMD.
Thanks again for your help and assistance. I hope I can continue to be one of the "lucky ones". It is nice not having to take "drugs" to make & keep you asleep and not having to go to the couch so your better half can get some rest. Snuggling is definitely the way to go to sleep:)
Date: Sunday, February 28, 1999 6:58 PM
Subject: Need help.
I have the restless leg syndrome and some nights it drives me to the edge of craziness. I am from a small town and the doctors think I am nuts.
I was taking over the counter quinine sulfate capsules tablets until the government took it off the shelves.
Also this RLS is starting to bother me during the day. Is there any help for us that don't have insurance to help cover the cost???????????
Quinine is very good for muscle cramps, but not for RLS. Are you sure that you really have RLS, and just nighttime leg cramps?
There are lots of over the counter treatments for RLS, see our web pages and RLS/PLMD Treatment pages.
Date: Tuesday, March 02, 1999 2:50 PM
Subject: : RLS Question
I have symptoms very similar to those of RLS. The only difference is that I have more pain than restlessness, although both are present, and my sleep study showed only minor periodic leg movements. From all the categories listed on the "RLS Treatment page," opioids have been the only treatment which work well for me.
However, my question concerns one of the possible causes of these symptoms, not the treatment options. I was wondering if you have ever heard of "lack of blood flow to the spinal cord" as a possible or hypothesized cause of RLS? I am currently pursuing this avenue of inquiry with my doctors and wonder if we are the first, or if this has been looked at before.
RLS is often relieved by walking, massage, hot baths and other things which increase circulation. Thus when circulation increases, blood/oxygen to the spinal cord increases also. Thus, it seems that this may be a possible cause.
However, increasing circulation also increases blood flow to other parts of the body (e.g. the brain, the legs, etc...and increases endorphins also) so it is difficult to isolate the mechanism by which this may help reduce the RLS/pain. Do you have any additional thoughts or have you heard of any work looking at blood flow/oxygen to the spinal cord and its relation to RLS?
Your theory about RLS is interesting. So far, there are many theories of what may cause RLS, but none of them is any better than the others.
If there was a decrease in blood flow to the spinal cord, the likely result would be paralysis or sensation loss in an area of the body that would be permanent or come and go over days or weeks. Usually when blockages in blood flow occur in that area, they are not of a reversible nature.
An exception to this is the "bends" or decompression sickness, which occurs in scuba divers. They get small gas bubbles which block the spinal arteries. The result is pain in an area of the body affected by that nerve, but it gets better very slowly and can even be permanent.
Date: Thursday, March 04, 1999 12:02 AM
I have this disease, but my doctor won't treat it, except for prescribing quinine at my request, unless I go to a sleep lab. I don't need a sleep lab to tell me what is wrong! I have found that sleeping with my legs up so that the calf and thigh are at right angles to each other helps somewhat.
Sometimes I am able to go to sleep but keep my husband awake. Tonight, I have taken a whole Flexeril (muscle relaxant) and two quinine tablets, and this should knock me out, but my RLS is overriding these two drugs.
Any advice anyone can give me will be greatly appreciated.
Please bring in copies of this letter, our web pages and any information that you can get from the Restless Legs Syndrome Foundation, Inc, to your doctor so that he will realize that you have a real disease which needs to be treated.
You DO NOT a sleep study to diagnose and treat RLS. A sleep study is helpful only if there is a concern about PLMD (which can be associated with RLS in 85% of cases) causing sleep arousals at night which might then result in daytime sleepiness. For simple RLS, a sleep study is of no benefit and usually just demonstrates a normal patient who cannot fall asleep (as it would with a patient with severe back pain which causes him not to sleep).
The quinine and Flexeril are not medications used to treat RLS and should not be taken for this condition. The therapy is quite well established (see our RLS Treatment Page ) and if your personal physician is not willing or capable of treating your RLS, please seek a referral to a doctor who can help you.
A Reply from Kate M.
Date: Thursday, March 04, 1999 9:45 PM
Subject: Re: RLS response
Thank you so much for getting back to me. My sister-in-law, who is a nurse, told me about the quinine treatment, but even her information was out of date by the time I went to the pharmacy.
It's really nice to know that there are other people out there who don't think I'm crazy. Even my husband, who has been kept awake by my jerking at night, seems a bit skeptical. The past two nights I slept (fitfully) on the floor, with my thighs at a right angle to my torso and my calves parallel with my torso, pressing up against the wall. This seemed to help a little.
I began drinking copious amounts of tea 3-4 years ago, when I was diagnosed as borderline diabetic and had to give up regular soda (I have never been a fan of Nutrasweet, so did not go for diet pop). So, the diabetic factor is there, along with tea, and my doctor has mentioned that I might have rheumatoid arthritis because of some strange things which are going on.
Also, I had a complete reprieve from RLS during January and most of February when I didn't drink any alcohol at all. After I started drinking again, the RLS moved in, about 10 days down the road. Finally, I have definitely got a magnesium deficiency, which I have been treating, but another doctor (not my primary care doctor) told me I needed to double my dosage and I have not done so.
THANK YOU SO MUCH FOR RESPONDING! I know it is considered rude to print in all caps on the Internet, but I wanted to *shout.*
Alcohol, caffeine and other dietary items can cause worsening of RLS.
Date: Wednesday, March 03, 1999 11:05 PM
Subject: Requip & Mirapex
What is the active ingredient of Requip and of Mirapex? Those names, I'm told do not appear in the 'bible' of pharmaceutical drugs available in my local pharmacy. The could find Permax and Parlodel but not Requip and Mirapex.
I'm told that certain conditions a specialist can write a prescription for Parlodel 2.5 mg at a cost of $35.00 for 30 tabs. Permax, it appears is only available on Government rebated prescriptions for Parkinson's Disease. It varies in cost between $3.20 (if having Parkinson's) or $91.00. the system tends to be a bit confusing, like most health systems, much depends on Government rules and whether you 'qualify'.
I understand that it may cost me up to $91.00 because I don't have Parkinson's and therefore the Government will not subsidize the cost. My local medical practice do not know very much, if anything about this syndrome: I am being prescribed drugs that have been tried before and have very limited success, e.g. Tegretol and Normison, or the suggestion of Clonazepam which I tried last year - it fixed the legs but I lost my memory.
Is there ANYONE in Australia who knows anything about this disorder? How can I convince my GP that these other drugs, (Permax, Parlodel) are Ok? My legs are starting to twitch now and it is 5.33 P.M. that is after taking Sinemet for 5 nights. I have been awake since 2.00 am today, with only 'twighlight' sleep since then. I'm nearly climbing up the wall.
Thanks for reading/listening,
Requip is Ropinirole and Mirapex is Pramipexole. See our RLS Treatment Page for more information about these drugs.
It sounds like your health care system is even more difficult to navigate than ours in the USA. We sometimes have problems getting approval for these drugs from HMO's, but in general with a letter from a physician the medications can be finally gotten.
Permax does work well, but tends to have mildly more side effects than Requip and Mirapex. Parlodel may be helpful, but most of us here have had less experience with this drug.
I hope that you can find someone in your country who can help you.
Date: Saturday, March 06, 1999 12:29 PM
I am a 45 year-old female. I have had chronic pain in my left leg (behind my knee) for almost a year. I have been to orthopedic doctors, even to the Cleveland Clinic, and my internal medicine doctor. No one can find a cause for this pain. I have had a normal MRI and normal knee x-rays, with no arthritis present, either. I went through physical therapy for back exercises and recently for hamstring/stretch exercises. Two doctors have said I have extremely tight hamstrings and only in taking care of that will I get rid of my leg pain.
I have been doing these stretches and exercises for two months religiously and am walking briskly for 25 minutes. at least 5 days a week. I am still feeling no relief. On top of this, I am sure I have RLS - finally a name for my "fidgety legs."
I wonder if all of these stretches and physical therapy exercises are worsening my RLS. I cannot sleep - I toss and turn all night long. Luckily, my husband is a sound sleeper. Also, when I tried to explain to all of these doctors that my leg(s) hurt when I'm sitting or standing for long periods and at night, they always say "there's nothing in there to hurt." No one has ever mentioned RLS. I feel like both orthopedic doctors were very "impatient" with my symptoms.
I have been reading your patient letters and all of your drug therapy information. I need to find a doctor or support group in my area - Akron - Canton - Cleveland, Ohio - can you please recommend someone. I really can't suffer with this anymore - I am losing my good disposition. Help!!
Unfortunately, most doctors do not think of diagnosing RLS. There is very little training given to teaching sleep disorders in general, and RLS in specific.
Check the RLS Foudation for their list of support groups in the United States
Date: Saturday, March 06, 1999 6:11 PM
Subject: Tylenol #3 and Ambien, Neurontin and Mirapex
Thanks to a recent post, I found out why I still kick when on Tylenol #3. I am on Mirapex and will go to a Sleep Dr. in two weeks because of severe problems with RLS which my neurologist cannot control.
My question is: Is it possible that Ambien does not work when taken WITH Tylenol #3 at bedtime. After three awful months, it appears that the Ambien (10mg) works pretty good when taken alone, but not at all when taken with the Tylenol #3.
I am taking Mirapex (usually .125mg at 7:30 p.m., sometimes and additional .125mg during the night if I wake up) and Neurontin (currently 3X300mg at 9pm). Is there any reason not to take these two together? I also take Tylenol #3 or Ambien on an "as needed" basis, as well as an Aleve sometimes in the middle of the night.
Thank you for all of your help.
Barbara (age 60, Comanche, OK)
Ambien should work as well (or better) with Tylenol # 3 as alone. Mirapex is probably the best drug to abolish PLMD (leg kicks) and treat your RLS. Your dose of Mirapex is still on the low side. Discuss with your physician about increasing the dose. Most RLS sufferers need between 2-5 of the .125 mg tablets per day.
There is no problem taking the Neurontin with the Mirapex. As most RLS sufferers will get resolution of their RLS symptoms with the right dose of Mirapex, Neurontin is not very often needed to be used with Mirapex to treat RLS (although for some severe cases, the two drugs may be needed together).
Date: Friday, March 05, 1999 10:13 AM
I think I have discovered on your Web site that my problem may possibly be "RLS". I have a problem with an itching or tingling on the bottoms of my feet. I have been reading your letters, and haven't found anyone with the same symptoms.
It only happens when I lay down or sometimes when I sit down. This makes sleep impossible and I have been taking Sinemet for the last year, 3 each of the 200's each night. The Sinemet makes me sleepy and I puts me to sleep.
Now it appears to be happening every now and then in the afternoons after sitting. Is this "RLS" or something else???? My doctor isn't a sleep disorder doctor, but is trying to help.
Love your site...I was lost until I found it.
Most people who have RLS find it very difficult to describe their RLS pain/discomfort. We have heard descriptions very similar to your itching/tingling in the bottom of your feet. If your symptoms occur at rest and relieved by activity, then it is extremely likely that RLS is your medical problem.
Mirapex is a better drug than Sinemet, and you may want to discuss this with your doctor.
Date: Saturday, March 06, 1999 5:42 AM
Subject: RLS gotten worse -- help!
I'm 47 years old and have had RLS since a child. For the last 4 years I've taken Sinemet which allowed me to sleep through the night. The problem has gotten much worse though since January when I had a complete hysterectomy and started taking Premarin. I've doubled the Sinemet and even take melatonin nightly and still wake up in about 2 hours with 'bugs crawling in my veins'.
What made the RLS worse, and what can I do about it?? Ahhhhh, for a full night's sleep
Thanks for any help!!
It sound as if you are having the usual problems with Sinemet treatment for RLS. When the dose is increased to more than 2 or 3 of the 25/100 tablets per day, there is a high risk of getting rebound or augmentation.
Rebound is RLS occurring earlier in the day when the nighttime dose of RLS wears off. Augmentation is RLS occurring at the usual time, but much worse.
Changing to Mirapex (or Requip, Permax) should resolve the problem.
Date: Saturday, March 06, 1999 11:46 AM
Subject: Diagnosed with MS
I was diagnosed in 8/97 with Multiple Sclerosis and they are treating me with Klonopin for restless legs. Then after awhile it was not working, so they switched me to Sinemet CR 50-200. After a few minutes I feel sick to my stomach and get this headache.
Are there any other alternatives?
Consider changing to the other Parkinson's disease agents (Mirapex, Requip, Permax), which are better RLS medications with a different side effect profile than Sinemet.
Date: Sunday, March 07, 1999 12:51 PM
You have an excellent page for RLS! I have read through a number of the letters and don't feel quite so alone. Am recovering from the flu, and have experienced the worse RLS ever during this time. Usually, I am able to get to sleep with RLS after taking a Tylenol at the beginning of symptoms, but this last week nothing has worked and I ended up walking the floor two nights until 2 am. Even playing on the computer didn't help....nothing did.
I am hoping that as the flu goes away, so will the enhanced RLS symptoms. As I usually only get them once in a while, it is mostly an aggravation. I really have tremendous admiration for those who suffer this all the time. It is a truly unbearable feeling and terribly embarrassing when it occurs during plane flights, concerts, meetings, etc.
I can't imagine having these feelings all night and not being able to sleep at all. I only pray my own case does not become worse with time
Unfortunately, RLS may become worse with time. Thankfully, there are lots of good medications that can help RLS and take care of your symptoms.
Date: Monday, March 08, 1999 6:31 PM
Hello to everyone with sleep apnea and RLS.
I have sleep apnea with RLS. I just want to know if someone has had surgery to rid them of this nightmare problem or acupuncture. Please respond because I'm very tired of taking 2 Sinemet 50/200 CR with no effect. Many sleepless nights...
Surgery does not help RLS, and in fact can often trigger RLS. Acupuncture has helped a very small minority of RLS sufferers, but most do not respond to this treatment.
Talk to your doctor about trying other Parkinson's disease medications (Mirapex, Requip) and possibly combining them with a bedtime sedative and/or painkiller. See our RLS Treatment Page for more information about how to treat RLS with medications.
Date: Tuesday, March 09, 1999 1:55 PM
Subject: RLS Support Group.
I am not sure if I have RLS or not. I am only 15 but whenever I sit down for longer than 10 minutes I get a pang of pain in my thighs right below the buttocks and it runs down to my calf. I am always switching, crossing, and fidgeting with my legs in school to try to suppress the pain. Sitting in the bleachers to watch a school assembly is like a death sentence, I almost cry because the pain is so intense.
I went to a Physical Therapist and he said maybe it's a hamstring problem and that I should stretch before school, it doesn't help. No one takes me seriously, they just say it's Virginia' s Leg Problem. I found your website as we were searching online in Biology class today. I never knew that so many people suffered.
I was wondering why most older people have it, none of my friends have it. I am also very active, I am in cheerleading 9 months out of the year. I don't have the kicking in bed thing though, but I do have trouble sleeping sometimes. I wish that someone would email me back or help me to diagnose what I have.
It does not sound as if you have RLS. The pain/discomfort from RLS occurs when sitting, but even worse when lying in bed.
Your problem most likely is sciatica. This tends to occur from pressure on the sciatic notch (the dimple in your buttocks), most often from sitting on a hard surface (the bleacher bench, for example). The pain then follows the nerve distribution down the back/side of the thigh and calf.
Speak to your doctor as anti-inflammatory medication can help this problem in addition to avoiding pressure on the sciatic notch (try sitting on a soft pillow in the future).
Date: Wednesday, March 10, 1999 3:35 AM
Here I am again! I would appreciate your comments and suggestion about a medication decision.
My (severe) RLS condition still has not improved, although in the past months the medication has been increased. The nights are now bearable, although I still have to take a shower at 4 a.m.!, but during daytime and evenings I still can hardly sit for longer then 30 minutes! My current medication is as follows:
Rivotril (clonazepam) 1 mg every other day late in the evening,
Requip .25 mg., 1 at 4 am, 1 at 6 p.m., 2 before going to bed, plus 1 extra during daytime, twice a week.
My treating specialist is very reluctant to increase the Requip dose. He is considering now two alternatives:
A. replacement of 1 or more Requip .25 by Tramodol Retard
B. adding codeine.
It seems that I have to make a decision to go either way, but I would very much have your opinion as to what would be the most preferable way to go!
Thank you again for your attention to this matter,
Amsterdam, The Netherlands
I would not recommend that you decrease the Requip at this time. Adding Ultram (Tramodol) or codeine would be a good idea. We often try one or the other (depending on which one works better for you) and sometime we alternate (3 days of one drug and 4 days of the other per week) the drugs to avoid addiction to either.
Date: Monday, March 08, 1999 7:31 PM
Subject: Night Jerks
I believe I have some from of RLS. It began after a severe bout with anxiety and depression 4 years ago. (I'm 48 now). I would like to know if anyone else with RLS has the symptoms I do.
I get night jerks (anxiety is usually the trigger) that not only involve my legs, but my arms, neck, mouth, tongue, I even get bright lights flashing in my head - all are quick, short bursts of electricity running through my body - and all happen while I am trying to go to sleep, sometimes over 50 times a night, maybe more after I am asleep.
I have had it happen for months at a time or for just a couple days and then it clears: usually when whatever I am worrying about is resolved. It started, or got extremely worse 4 years ago when I combined Buspar with trazadone. I have never taken another anti-depressant since, and thankfully don't need to, although I still fight anxiety. I find Tylenol PM, calcium, magnesium somewhat helpful, but not always.
Does anyone with RLS have the flashes of light in the head also?
Judy B., Napa, CA.
I am not sure that you have RLS. What you have sounds similar to PLMD, but even that is generally quite different from what you are describing. I have never heard of flashing lights with RLS/PLMD.
Date: Wednesday, March 10, 1999 10:31 PM
Subject: possible RLS
I was surfing the web for info on insomnia and happened across your site, I had no idea that there is such a thing called RLS. My symptoms are the inability to relax and sleep at bed time. When I start to feel like I am going to fall asleep, I inevitably get an overwhelming restless feeling in my legs.
This has been happening for years, what I have tried is to shake my legs and stretch them (sometimes very vigorously) in hopes to make them tired. it usually doesn't work, I sometimes try to walk around in the house and that usually doesn't work either. I get up late at night to watch TV or a video in hopes it will help me get tired, sometimes it helps.
Nothing has yet been successful. I'm 37 and male it seems to be more occurring even during the day.now and It is difficult to keep a job because I am always so tired from lack of sleep and any information you could help me with would be greatly appreciated.
Thank you for your time.
It does sound as if you have RLS. Proper treatment should be able to take care of your RLS symptoms and let you get a good night of sleep.
Check out our RLS Treatment Page for information on how to treat this condition.
Date: Thursday, March 11, 1999 8:23 AM
Subject: blood pressure medication
I have severe RLS and high blood pressure. I understand that some blood pressure medications can make RLS worse, and that some may actually help. Any suggestions? Does it depend on the classification of medication, or on specific drugs.
A few blood pressure medications have been shown to help some RLS patients. This includes Catapres (Clonidine), Inderal (Propranolol), and Cardizem (Diltiazem).
These are only minor RLS medications, meaning that they will only help a few. For more information on these drugs go to our RLS Treatment Page. Other blood pressure medications may help or hinder RLS, but we do not have any good information on them.
Date: Thursday, March 11, 1999 6:45 PM
Subject: RLS and 'Aching Legs"
You seem to be one of the best sites for information and maybe you can help me. I am a 76 year old male and have had RLS and PLMS for at least 40 years. I do belong to the RLS Foundation and have picked up a lot of info and help. I have been using military doctors at Tripler Medical Center in Hawaii. Right now I am on a combo of drugs and they work at least 90% of the time. The drugs are:
Amitriptyline, 10mg, 2 times per day
Mirapex, .125mg, 3 times per day
Klonopin, .5mg, 1 at bedtime
As stated the RLS is pretty much under control, but for years I have had the additional problem of "Aching Legs." Currently the "aching" has become pretty severe. In a sense it works much like RLS. I have to get up and walk it off, and last night it kept me up most of the night. This ache, like my RLS is pretty much in the center of my calves and 90% in my left leg (calf.)
I read everything I see about RLS and mostly this is via the Night Walker's newsletter, but I have never seen anything about "Aching Legs." DO YOU HAVE ANY ANSWERS? If so, I would appreciate an answer.
Mahalo from Hawaii,
It is not clear from your letter how your "aching legs" are different from your RLS. If the aching in your legs comes only with rest (sitting or lying down) and is relieved by moving your legs or walking, then it might be RLS. If that is the case, then perhaps an increase in Mirapex may be helpful.
Another way to treat the aching legs (if an increase in Mirapex is not helpful) would be to add a pain killer such as Vicodin or Ultram.
A Reply from Bill P.
Date: Friday, March 12, 1999 3:57 PM
Subject: Re: RLS and "Aching Legs"
First, I want to thank you for your rapid response. I was really shocked to hear from you so soon. I guess you haven't heard of Hawaiian time. Anyway THANKS!!!!
The aching legs are different only in the feeling. They occur only while resting and the cure is to walk it off. As you know, it is difficult to explain the feeling of restless legs except that, at least for me, it drives me mentally off-balance in addition to the feeling. Aching, although not pleasant is not nearly as disturbing as restless legs. Of course, the end result is the same, robbery of sleep.
I should add that the aching legs usually occur in the early morning. Like at 3 AM to 6 AM after a long sleep. But lately, as the regular RLS is pretty much under control the aching is a replacement and occurs early in the sleep cycle.
Thanks again for your advice. I will show this to my doctor at Tripler.
Mahalo from Hawaii,
Good luck, you can also alternate Ultram and a narcotic in order to avoid the possibility of tolerance to the narcotic.
Date: Friday, March 12, 1999 10:52 AM
I am a 52 year old male that takes .25mg of Xanax for "sleep terrors". I have been taking this medication for several years and about 3 years ago reduced the dosage from 1mg to .25mg. I have not had any serious sleep terror episodes since the reduction in dosage and am able to walk without stumbling if I wake up during the night.
After reading several of the letters on your website I wonder if the restless feeling I have in my legs and sometimes arms isn't RLS. I have had this feeling for years and the condition is worse when I get tired. For relief I have to take Xanax and go to bed.
Many of the letters sent to you sound like the person has pain in their legs. Fortunately, I do not. However, usually wake during the night with this restless feeling. I can usually minimize the length of time I am awake by reading or getting out of bed and doing something to occupy my mind such as watching television for about 30 minutes. Sometimes taking an additional .25 mg of Xanax will help. By the way, this restless feeling sometimes affects my arms and makes me feel very jittery. Jittery and restless don't adequately describe the feeling but they are the best I can do to describe a very uncomfortable feeling I have had for over 30 years.
Recently I had surgery and was given Ultram for pain. I have found if I take 50 mg of Ultram in addition to the .25 mg of Xanax I am usually able to sleep through the night. This has not happened in several years. Is there any advice or comments you can provide. Thank you for a very informative website.
The feeling that RLS patients describe is not really pain, but an indescribable discomfort that makes them want to move the affected limb in order to get relief. Your description of jittery limbs is quite similar to many other RLS sufferers.
Ultram is a very good medication for RLS, but it may have an addictive potential (as does daily use or Xanax). Mirapex is a non-addictive drug which may relieve your RLS symptoms and decrease or eliminate the need for Ultram.
You may want to consider taking drug holidays (2 days off the drug every 2 weeks) from the Xanax.
Date: Sunday, March 14, 1999 9:22 PM
Subject: Switching from Permax to Xanax
I have RLS and a history of depression. I have been taking Permax for about a year, 0.05 mg at dinner time and 0.075 mg at bedtime. I also take 0.25 mg of Xanax at bedtime and am taking St. John's Wort. I have been fairly well controlled with these medications, until recently, when I have increased the Permax to .1 mg at bedtime.
Although my RLS seems worse lately, my larger concern is a loss of libido. ( a problem of about 9 months duration) I attribute the problem to the Permax, although I know that there is not a lot of documentation to support the idea. What I would like to do, is to taper off on the Permax, increase the Xanax to help with the withdrawal, and see if I notice any change in my problem.
Would you advise such a course of action? I was planning on cutting down on the Permax by .025 mg each week and replacing it with .125 mg of Xanax.
I would appreciate any advice you could give me on this matter.
Thank you ,
The problem may be tolerance to Permax, rather than worsening RLS (although this can be difficult to figure out). You may want to change Permax to Mirapex (a recent study showed that there was no cross tolerance between these two drugs). If this doesn't work, you might then increase the Xanax, but only by a small amount (up to .5 mg).
Another idea might be to add Ultram or a narcotic pain killer on an as needed basis to your medical regimen for treating RLS.
Date: Sunday, March 14, 1999 7:51 PM
Subject: No Subject
I bought a bunch of your books about a year ago. They were wonderful! Gave 2 to our local doctors office & one to each of the hospitals that our son, who is in very poor physical condition (& has ferocious RLS) frequents. The nephrologist were amazed to learn that RLS effected anyone who wasn't on dialysis!!! They sat around a big table discussing this & pouring over the book.
Dave & I have had RLS all of our lives. He has a 13 year old kidney transplant that is barely working at this time, but his body is not strong enough to go through another transplant. He might sometime have to go back onto dialysis.
After reading that there are good indications that RLS originates in the spine, I wanted to scream at the researchers, "I COULD HAVE TOLD YOU THAT!" Sometimes in the past, when my medications wouldn't kick in well enough/soon enough, I had my husband massage my spine - where the back muscles were pulling so hard that it seemed my shoulder blades would be crushed together. He rubbed so hard, at my urging, that his thumbs soon tired too much to continue; but it gave me relief until I could get settled down. Then, one night he was sick &couldn't help! My body was in BIG TROUBLE!
I heated a micro-waveable Thera-Beads pad, & 3 of our "rice bags" (a man's sock about 1/2 filled with rice or wheat, with the top turned over & sewn down. Another sock is used as a "washable cover".) in the microwave oven. I draped one rice bag around the back of my neck while working with the others which I positioned this way: the Thera-Beads pad on a pillow on the bed (so that it would cover the upper part of my spine), touching the rice bag at my neck, & touching the other two rice bags which I had positioned so that their long sides just touched one another. Then I positioned myself so as to have my neck on the Thera-Beads pad, & my spine right where the two rice bags touched. This worked so well for me that I barely remembered getting comfortable. I awoke several hours later, without RLS bothering.
These bags can be heated in a microwave oven or chilled in a freezer. If anyone heats them, they should use caution: heat for 1 minute & then heat for additional 15 minute periods, until the proper temp. is reached. THEY CAN GET TOO HOT!!!
I enjoy reading your web pages! Thanks,
Date: Sunday, March 14, 1999 9:43 PM
I am a 33 year old female with RLS diagnosed by two sleep studies. I tried Zoloft 50 mg then 100 mg, this help my legs at night but made me very anxious and nasty. Next I was changed to Sinemet 25/100. This helped at night but my legs during the day were worse than ever before.
When I told my psych (I also have recently been diagnosed with add) about my legs she said she gives her patients Imipramine. I have been on this for a week and seems to be getting better. I'd like to know if there is any coorelation between ADD and sleep disorders. Every book I have read on ADD always has a section on sleep disorders.
Thanks for listening.
ADD (Attention Deficit Disorder) is a separate disorder from RLS, but it is thought that many RLS patients may be misdiagnosed as ADD. Any disorder that can deprive patients of sleep, may result in decreased attention span during the day and simulate many of the ADD problems.
Tofranil (Imipramine) is an antidepressant that may help or hinder RLS (more often hinders than helps).
Mirapex (or even Permax or Requip) generally work better than Sinemet for RLS.
Date: Monday, March 15, 1999 2:54 PM
I have been diagnosed with RLS though I have no sleeping problems or limb movements during the nights. My problem is having a burning sensation in my lower left leg and foot only. I am having trouble in walking long distances. It becomes easily tired and have burning sensation and weakness. During nights it becomes worse.
I had EMG and everything is alright. My doctor prescribed me a Parkinson's disease pill. I have a cervical disc herniation problem, but no lumbar disc problems.
My question: Does RLS patient have my kind of problems? Thanks in advance. (I am looking forward to read your page)
You have some symptoms of RLS, that is a painful leg with rest. RLS patients do not generally have pain/discomfort with activity and they do not have problems walking or weakness/fatigue in their limbs. The main problem with RLS is not being able to sit or go to sleep due to limb discomfort.
Your problem does sound significantly different. Let us know if the Parkinson's disease medication helps you.
Date: Monday, March 15, 1999 7:12 PM
Subject: Whole wheat
Hi! Both for my father and for me starting to eat whole wheat on a regular basis has reduced (but not eliminated) RLS, especially at night. I recall that dietary factors are often cited (B vitamins, among others?) but I don't recall seeing this one. Have you heard of whole wheat as beneficial?
Whole wheat bread is a new one, but many patients have found that diet can help or control their RLS symptoms.
Date: Monday, March 15, 1999 7:30 PM
I have had RLS for about 10 years. Until I had 18 inches of my lower intestine removed in Oct 97; the RLS was only a mild problem. Now it keeps me from sleeping more than 3 or 4 hours each night and then only the last 3 hours when I am so tired I can't stay awake.
I do strenuous work outside that causes me to lose body fluids and thus probably vital vitamins and minerals too. All my blood tests have shown that my B12 level is normal. This may be that I have always taken B12 every morning. But one day my RLS was so bad that I decided to take all the vitamins that I take in the morning before supper. To my surprise my RLS was gone after supper. Since that time I have noticed that I begin to get RLS about 6 to 8 hours after taking the vitamins. The effective time of the vitamins appears to be linked to how much exercise I get and particularly how much fluid I lose.
For the last week I have been taking B12, Potassium, and Vitamin E just before going to bed. I have gotten fairly good sleep but if I do wake up I have found that I don't have any RLS symptoms at all.
For what it is worth, I have found several RLS Home Pages that site B12 and Vitamin E as well as iron as deficiencies associated with RLS. They seem to imply that testing normal for any of these is not necessarily valid for anyone with RLS. Thus RLS may require a higher dose of these supplements than a normal person would require.
I have not been scientifically or systematically trying to find out exactly which of my supplements really have the greatest effect. Since I know that the removal of 18 inches of my small intestine at its base has a dramatic effect on my ability to absorb B12 and possibly other vitamins and minerals my case may not exactly fit others. But for what it is worth here is what I have been taking.
Amitriptyline 12.5 mg for depression (but it definitely makes the RLS worse)
St. John's Wort 300 mg depression (unknown effect on RLS)
B12 1000 mcg time release (morning, supper, before bed)
Vitamin E 1000 IU (morning, before supper, before bed)
Potassium 99 mg (morning, before supper, before bed if RLS symptoms present)
B6 100 mg (morning and before supper)
Centrum Silver (morning and before supper)
Vitamin C 500 mg (morning and before supper)
B Complex with Folic acid (morning and before supper)
I have not been to my Doctor since I began taking the multiple doses of supplements to find out what his opinion is about overdose or other side effects. When I have talked to him in the past about RLS all he could suggest was B12 and even then did not recommend any specific daily dose.
My question to you is why have I not seen more about the use of B12, E, potassium, and iron on your Web Page? Also do you have any opinion as to whether I could be taking more of any of the supplements than my body can safely handle? As I seem to get relief from RLS within an hour of taking the supplements I am sure that they (the whole group) have a significant effect for me. As I take only B12, E, and sometimes Potassium at bedtime and get similar results within an hour I think that these may be the primary source of relief.
We have a whole section on our RLS Treatment Page devoted to our deficiency states and RLS . Included is a discussion of iron, B12, folic acid and magnesium.
We have not heard of potassium helping RLS patients, despite many RLS patients trying these so far. The problem with treatments such as yours with various vitamins or minerals seem to work for only a few RLS sufferers.
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.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
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