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Date: Tuesday, December 29, 1998 8:47 PM
Subject: Clonazepam user
Hi from Toronto. I was diagnosed at a sleep clinic about 18 months ago with RLS, although since I have no daytime symptoms, I think I probably have PLMS. I've always been a leg bouncer while sitting, but it is not painful, and I'm usually unaware I'm moving my legs at all. (though it drives my girlfriend crazy).
For about three years before going to the clinic I found myself very tired during the day, nodding off while driving, and not being able to concentrate at all. I woke during the night usually 2-3 times, and did not feel rested in the morning. During the day people would talk to me and I literally had to struggle to understand and remember what they were saying. I had to concentrate just to engage in simple conversation. I though maybe it was some form of depression, but I didn't feel unhappy, or down.
This was a complete reversal from my former self in college, where I was juggling different projects at once, felt more confident, very conversant. My doctor prescribed Clonazepam, one to three .5 mg tablets before bedtime. I've been taking two, and I find I'm nodding off within half a hour, sleeping through the night, occasionally waking maybe once.
The major improvement has been in my concentration. It came back almost immediately upon start of medication. Plus I feel more "mellow" during the day, and handle people more confidently. So far, 18 months of taking Clonazepam has been very helpful in my situation, but I have a few questions:
Is there a possibility of birth defects in children if Clonazepam is taken by the male? Should I stop taking it before we decide to have children? How long before?
I've tried a "drug holiday" of 2-3 days, but the withdrawal symptoms are profound. I revert back to my old self within a day or two, sometimes even worse. I can barely function at work, and feel very moody. Advice on this?
I've read about calcium helping. Should I take calcium first, then reduce the clonazepam, or just switch right away?
Any thought on herbals that are supposed to increase alertness and brain function?
Here's a crazy thought, but what if I "lashed" my legs together a night with some comfortable material, to keep them from moving? Anyone ever try this?
Thanks, and take care everyone,
Klonopin (clonazepam) does not affect the male sperm so it will not cause any birth defects.
Klonopin is a long acting drug, so the drug holiday should be at least 5-7 days to be effective. Since 2-3 days is very difficult, I would recommend against trying the drug holidays. If after 18 months you have not developed tolerance (needing a higher dose to get the same effect), then you will likely not have that problem. We generally prescribe shorter acting sedatives (Xanax, Ambien) which require only 2 day drug holidays.
Calcium, herbal remedies have been tried by many and a few have had success. Most do not have much improvement with over the counter treatments (see our RLS Treatment Page for more information on all kinds of non-conventional therapies).
Lashing your legs together might help your bed partner from experiencing the results of your PLMD, but will have no effect on the arousals caused by the muscle contractions of your PLMD (it is the arousals which result in your daytime sleepiness/decreased concentration).
Date: Thursday, December 31, 1998 7:53 AM
Subject: RLS treatment
There is a new antidepressant which reduces RLS to a significant degree. Remeron, although not indicated for RLS is a non-addictive sleep inducing medication which can reduce or alleviate symptoms of RLS.
Remeron, unlike other antidepressant is almost devoid of side-effects except for daytime sleepiness during the first few days of use. This medication should be one of the first considered, where medication is indicated.
Remeron (Mirtazapine) is one of the newest antidepressants and is listed on our RLS Treatment Page. Its low level of side effects may be due in part to its newness. After more extensive usage, many drugs are found to have more side effects than they were thought to have initially.
We have heard from some RLS sufferers that Remeron has worked fairly well. But like with the other antidepressants, patient's RLS symptoms can get better or worse and we have heard from many who have worsened with Remeron.
Date: Thursday, December 31, 1998 12:13 PM
Subject: RESTLESS LEGS
I am a 49 year old female. I had a partial hysterectomy when I was 26 years old. I have had a problem with restless legs since my mid-30's. I have also been a pharmacy technician since 1968. For years I have seen doctors write prescriptions for "restless legs". All of these prescriptions to this day have been written for women. They have always been for tranquilizers, sleeping pills and anti-depressants.
When I started taking hormones, I noticed that I no longer had restless legs. When I do get them, it drives my husband nuts. It usually starts when we are sitting watching TV. I jiggle my legs and hit them, to no avail. Now I KNOW for a fact, that when this happens to ME, I need to get up and put my hormone patch. Now, my husband also knows. When he sees me jiggle my legs and bounce them up and down on the recliner he reminds me that it is time to change my hormone patch and makes sure that I get up NOW and do it.
I have had several friends, my mom and my sisters, have this problem also. I have told them they need to see their doctor and have their hormone level done. All of them put it off, not believing that could be the cause. All of them eventually did it, started on hormone replacements, and the "restless legs" are gone. It always starts again though, when they/we do not keep up on our hormones.
I am surprised to hear, by reading your column, how many men are suffering from this problem. I truly wish them ALL luck. It is a VERY FRUSTRATING STATE TO BE IN. Thank God my "restless legs" are taken care of by hormone replacement and those of my friends and family.
ALSO, one of our customers in retail pharmacy, was on tranquilizers and sleeping pills for "restless legs". She also was sent to a psychiatrist by her primary care. A year later she was put on Premarin. She no longer has restless legs, no longer takes tranquilizers or sleeping pills.
Within the last year I have been filling prescriptions for hormone replacements for "restless legs". There are still other prescriptions written for tranquilizers etc., but thank God some are written for hormone therapy. I am not against tranquilizers, sleeping pills and anti-depressants, but it is wonderful that some of us can skip them with the use of hormones. I also realize that some women do not want to take hormones because of the potential side affects.
This is only what I have discovered PERSONALLY, so please consider this when you read my experience.
Most sleep specialists will not prescribe antidepressants for RLS, as they have just as much a chance of worsening RLS as helping it. Tranquilizers/sedatives are helpful for mild RLS. For moderate to severe RLS, the Parkinson's disease medications are recommended.
It is interesting that hormones have helped you so much, as many other female RLS sufferers have complained that their RLS symptoms got much worse only after they started hormones. RLS tends to be very difficult to generalize successful treatments as the responses can be extremely variable to the same "remedy" amongst different patients.
Date: Thursday, December 31, 1998 1:30 PM
Subject: Seizures due to holidays
My hysterectomy has taken its toll on my RLS/PLMD so I've gone to a neurologist. The plan is to do a sleep study for one night on Jan. 13th.
1) Is this long enough to tell anything?
I have to be drug free, of course, and am worried about clonazepam withdrawal. Over the past 2-2 1/2 years I've taken as much as 2 mg per night but this causes horrible hangovers. I am now down to .625 mg per night. I have been on 1 mg or less for a year or more. Do I start tapering off now before going cold turkey on Jan 8th as the doctor recommends? I'm scared of having a seizure.
2) I'm also on 1 and 1/2 Vicodin per night and 10 mg Ambien, which I've only been on about 3-4 weeks. What would you advise?
Thank you for you wise and kind help,
Seizures can occur (although, luckily very uncommonly) when withdrawing from chronic benzodiazepine (sedatives) use. As clonazepam is a very long acting drug with metabolites, it gets out of your system quite slowly, so the chance of withdrawal symptoms (seizures) is much less likely with this drug. We do not generally like to prescribe this drug due to its long active life which causes daytime problems (such as your hangover).
You have not been on the Vicodin or Ambien long enough to worry about withdrawal problems. The Ambien is a sedative that is somewhat different from the benzodiazepines, but should not be taken with other sedatives (clonazepam).
I am not sure why you are having your sleep study. It does not help at all in diagnosing or treating RLS. This is done based on your clinical symptoms of the strange RLS discomfort/pain in your limbs associated with a need to move the affected limb to relieve this problem. The treatment is adjusted to get rid of the discomfort/pain and the sleep study is not helpful (especially as once you are asleep the pain/discomfort is not present).
When deciding whether or not to treat PLMD (when there is NO associated RLS), a sleep study may be helpful to see if the PLMD problem is causing frequent arousal which need to be treated to prevent the resultant daytime sleepiness. In PLMD patients (with or without RLS) who have no daytime sleepiness, there is no reason to do a sleep study. If a sleep study is warranted, one night will generally be sufficient to find the problem.
The best medications (generally very safe and no addictions problems) for RLS and PLMD together are the Parkinson's disease medications (see our RLS Treatment Page).
A Reply from Anne G.
Date: Friday, January 01, 1999 9:08 AM
Subject: Thank you
Thank you for your answers to my questions. I have RLS and possibly PLMD w/ daytime sleepiness (exhaustion), so I guess the sleep study is warranted. I've been wanting to go drug free for quite some time anyway, so here's my opportunity.
My note was not clear on the subject of Vicodin--I've been on that about a year, but don't believe I'll have as much trouble getting off that as w/ the clonazepam. If you have a different thought, let me know. Otherwise, I'll be in touch later.
Oh, unfortunately, I have had almost immediate rebound problems with Sinemet 2yrs ago and pergolide (Permax) 1 year. I'm also a veteran of gabapentin (Neurontin) 2-1/2 years ago and it did not help whatsoever.
Thank you so much,
Rebound is quite common with Sinemet, but much less so with Permax. The newer drug Mirapex (an possibly the even newer Requip) may work well when the older Parkinson's disease medications have failed.
Date: Thursday, December 31, 1998 2:47 PM
Thanks for making this page and putting up all the information for people like me who suffer from this annoying disease! I live in Philadelphia Pennsylvania, USA, and I have not yet found a doctor who knows what I am talking about or cares to do anything about it.
One doctor put me on arthritis pills and another said to take sleep aides. Neither of these worked. They also told me that RLS only happens at night, which I beg to differ. I feel all through the day!
Do you know of anywhere I could get help or anything online that I could contact to help treat this.
Thank you and have a great day,
The easiest way to find a good RLS doctor in your area would be to attend or join the RLS support group in your Philadelphia. There will be lots of RLS sufferers there who can direct you to local doctors who are well versed and comfortable treating RLS.
Here is the information on support groups in your area:
Greater Philadelphia Support Group
Edwin and Katheryn Overman
RLS does occur more in the evenings and at night, but many of our RLS patients can suffer throuhout the day, especially when they are sitting or resting. Check out our RLS Treatment Page for more information about treating RLS.
Date: Friday, January 01, 1999 5:01 PM
I am so glad I found this web site. I have had RLS since childhood. My dad had it, my sister has it, and my daughter has had it a few times.
My bouts worsened this past year to the point that I wasn't sleeping at all. I was so tired I could not drive or even control my emotions (I cried at the drop of a hat). I finally saw a doctor who's husband is a neurologist. She referred me to him.
He prescribed "Permax" which is a drug used to treat Parkinson's. When I first began treatment it made me nauseated to the point I quit treatment. I soon discovered I'd rather be sick at my stomach. RLS takes control of your life. I soon became more tolerant of the Permax and it works well.
My RLS is also triggered whenever I try to read. I wonder if anyone else has had this problem.
Diane in Arkansas
Nausea with Permax is a reasonably common side effect. Most get used to the medication and the nausea becomes less of a problem such as in your case. The newer Parkinson's disease medications such as Mirapex and Requip tend to cause less nausea.
RLS triggered by reading is a new one. Usually, mental activities such as using a computer seem to help. The worsening with reading might have more to do with being at a rest position rather than the reading itself.
Date: Saturday, January 02, 1999 5:33 PM
Subject: Reading triggering RLS
Yes - reading does trigger RLS if I'm not on medications. That's working well, as otherwise reading always sets mine off.. I think it's holding your arms and hands still that does it, not the reclining. I can walk and try and read and it still happens. Of course I have RLS very badly in my arms and hands too.
I can give an amen to Requip though. I can now read all I want. I also used Permax but could not get over the nausea if I took enough to help. Several medications later, I am pleased with Requip.
I do have one question for you on it though. After almost a year, I still get unbelievably sleepy after the first dose of the day. My doctor said that would get better, but so far it has not changed. A small price to pay for my life though. Do you have any clues on that?
I've also not had to go back on antidepressants. Since starting Requip and I've also lost 45 lbs. I don't know if there is any connection, because I have worked at it, but before it did no good for me to work on it because every medication that I took caused me to gain weight. Just a bit of luck finally I guess.
I did not say earlier that I am 51 years old and have suffered from this since I was small child. My father had it, my brother has it, and my daughter has it. I would urge anyone to check out a sleep center for help. I had things over the years that helped some for a short while, but never any real answers until I went to a sleep center a couple of years ago.
Thanks for listening,
It is hard to explain why you have persistent sleepiness after your first dose of the day of Requip. This is an inconsistent side effect and we have even seen patients complain of insomnia from Requip. It will be interesting to hear from others, and see what they have to say about reading and RLS.
I have not heard of any relationship between Requip and weight loss, so that I suspect it is your own hard work that has enabled you to lose the 45 pounds.
Date: Sunday, January 03, 1999 4:53 PM
I have noticed a strange twitching or jumping in my legs when driving 20-30 minutes or sitting and relaxing in the evening. This does NOT affect my ability to sleep. My wife does not notice my legs twitching when I sleep and I get 5-7 hours of good sleep nightly.
This 'twitching' has gotten noticeably more significant in the last three months. Other than being uncomfortable and irritating, should I be concerned?
Is there something non-medical I can do? Is there a vitamin or mineral that you advise?
It is very likely that the jumping legs is PLMD, but not RLS. As long as this does not cause significant sleep arousals (which would manifest itself as daytime sleepiness), then it is alright to ignore this condition.
As far as treating the PLMD, most non-prescription remedies only seem to work in a small minority of patients, but you can check out our RLS Treatment Page for more details (look especially at the non-conventional drug section).
Date: Monday, January 04, 1999 6:43 PM Subject:
Possible RLS, what are my avenues?
Just returned from my GP and found your web site. The doctor suggests the possibility of RLS and asked for a few days to do research and to process blood work. His lack of knowledge of the subject leaves me tentative.
What advice will you give for the first steps toward the diagnosis (i.e. awaiting his conclusions or begin to look into a neurologist with experience of sleep disorders etc.)? What I read in the last hour has put me a bit on edge and concerned.
Some realistic synopses and possibilities in what is to come would be appreciated. I thank you in advance for your input and advice.
There are no special tests needed to diagnose RLS. It is simply diagnosed based on the clinical story and normal physical examination. If you have a hard to describe discomfort in you limbs at rest or when you try to go to sleep, which makes you want to move your legs to get relief, then you have RLS.
The treatment is more difficult, but that is discussed at great length on on our web site (see our RLS Treatment Page). It is sometimes necessary to seek a more qualified doctor (neurologist or sleep specialist with expertise in RLS) for this treatment, but not for diagnosing RLS.
Date: Saturday, January 09, 1999 4:06 PM
Hi from Holland.
I have severe RLS and I use Permax since Sinemet didn't work anymore. My symptoms change. Now I have it on the right half of my body, leg, torso, arm, sometimes neck and face. I also have numb areas on my back.
I heard that it might be paresthesia and a symptom of RLS. The numbness I have when I walk, or do things. I get the "normal " RLS when I (try to) rest. Is this common?
Thank you in advance for your reaction,
Parathesia (numbness and tingling such as you feel after sleeping on your arm) is not a part of RLS. Parasthesia occur quite commonly for many different reasons, so it is not unusual for both RLS and non-RLS patients to complain of this problem.
If the parasthesia problem is getting worse, you should discuss this with your own doctor.
Date: Tuesday, January 12, 1999 6:01 PM
Subject: Some relief.......
Recently my wife purchased the book "Sugar Busters". And for the past two week we've been following the recommended diet. Some weight loss has been noticed by both of us, but more importantly I've noticed that my RLS symptoms have diminished.
I wonder if the lowering of the sugar levels in my blood has something to do with it. I wanted to share this with other so they may try it as well. My RLS is not as severe (most of my life) as many of the letters I've read, but high sugar blood levels may be a cause for some.
Until I discovered your web site, I never knew others suffered as I have or that it was even named.
Cape Canaveral, FL
We have heard several patients who have noted that taking sugar out of their diet improved their RLS symptoms. There are lot of other diets that have also been successful in small numbers of RLS sufferers.
No medical evidence is available to link high sugar levels to RLS.
Date: Thursday, January 14, 1999 11:42 AM
Hi, my problem is mostly in my feet, even though my neurologist has diagnosed it as restless legs syndrome because of my other symptoms. At night before I fall asleep sometimes my feet burn like they are on fire, and the only thing I can do is get up and walk around.
I was prescribed Parlodel and it doesn't seem to help much. My feet always feel a tingling numb sensation.
Thank you for any help you can give me.
You may have two problems occurring together. The burning in your feet at night which is relieved by walking does sound like RLS. The tingling and numbness in your feet which occur all the time may be due to a nerve problem (neuropathy) which is independent of and not related to RLS.
Parlodel is a Parkinson's disease medication that works reasonably well for RLS. Better Parkinson's disease medications for RLS include Mirapex, Requip, and Permax.
Date: Thursday, January 14, 1999 3:33 PM
I am looking for more information. In the beginning of November, my mother (42 years old) started having spasms in her right arm and having "restless feet".
Her first doctor only gave a vague list of possibilities on what the problem may be. The second doctor said RLS. My mother is now taking Sinemet. The feet have stopped, but occasionally the arm still twitches.
All of her episodes include a throbbing headache and drowsiness. Is this RLS? What does the future of a person with RLS entail? We are seeking more information please.
Jennifer, Salem OR
The "restless feet" are likely due to RLS as they did improve with Sinemet. The maximum dose of Sinemet should be no more than 2 of the 25/100 tablets per day. More than this dose can cause trouble with augmentation and rebound (see our RLS Treatment Page). Other Parkinson's disease medications such as Mirapex, Requip and Permax work better than Sinemet which less side effects.
The twitches/spasms in her right arm may be due to PLMD (Periodic Limb Movement Disorder) which is often (85% of the time) associated with RLS.
The headache and drowsiness are not part of RLS/PLMD and may be due to other medical conditions or even possibly to medications that your mother is taking.
RLS tends to get slowly worse with increasing age, but the course is extremely variable in most RLS sufferers. Check out our web site for more information and also with the Restless Legs Syndrome Foundation, Inc. which is an excellent source of information on RLS.
Date: Friday, January 15, 1999 6:09 PM
Subject: RLS and oil
I am female, 49, with longtime chronic, but variable RLS. Seems to come and go with monthly cycle and various factors. May be heredity tendencies, as my mother and niece have had it; interestingly, each generation gets it earlier in life (my mother midlife, myself at age 18, my niece since childhood).
I read with interest a user's posting on the herbal treatment using an olive oil base. I find that rubbing vegetable oil alone on my restless leg usually helps to palliate the symptoms within a short time, unless it is a severe night of the type I might get a few times a month. My theory is that the oil helps to temporarily insulate the nerves from ambient electrical fields, to which they are hypersensitive (along with other things), perhaps due to chronic neurotoxins, coupled with heredity physiological weaknesses or dietary/lifestyle issues that lead to their buildup or prevent their effective elimination through liver, kidneys, skin, etc. Part of what has prompted me to think along these lines is that I once attended a talk by a man who specializes in assessment and abatement of electromagnetic fields pollution in the home and then subsequently consulted with him, as he said that ELF's (extremely low frequency fields) cause a "tired but wired" pattern for many people, which sounded like RLS.
He tested me with a very sensitive bioelectric meter in my home while I assumed various positions. We found that if I lay flat on my back in the bed, the currents going through my body were the greatest. If I took the position that most relieves me (fetal, face down), the currents dropped. And even more so if I got off the bed onto the floor in the middle of the room, which I find is even more relieving (though not conducive to sleep!). When he turned off the main electrical switch for the house, all currents going through my body dropped. (In our new home we attempted to reduce electric currents with a shutoff switch etc. but I haven't really tested it electrically (he's out of state) or even used it consistently enough to be sure that it helps.) I wish I understood more about bioelectricity, but I'm sure there must be an underlying physical explanation that ties together the various observations people have made about RLS's causes and treatments and I think it's an important piece of the puzzle.
For example, striking and shaking magnetized object sharply can demagnetize them. Could this be a factor in the relief people get from pounding and shaking their legs? Could the treatment with water posted on your alternative treatments be affecting the electrolytes? The diurnal nature of RLS may tie in with a very significant shift that occurs in the earth's electromagnetic fields daily, which is related to fields that originate in the sun's "solar winds," I believe. Of course, this would still not explain the underlying cause for the bio-electric disorder in some people (why some have it , some don't). Besides any hereditary weaknesses, I think that a more underlying cause may lie in an examination of possible neurotoxins. The user whose comments you posted regarding pesticides confirms my suspicions (I value her observations and they prompt me to clean up my act more. Though I use organic foods, I'm not as consistent about it nor as careful an observer as she seems to be).
Organophosphates, etc. were specifically developed as nerve gases in WW1. As I understand it from lay research, most insecticides, including these, work by affecting insects' nervous systems. The fact that insecticides are recent and RLS has been known to exist a long time does not necessarily rule out neurotoxins as a major precipating cause, as there are other types of neurotoxins found in cities for centuries, such as lead and arsenic. Pesticides may just be one of the most prevalent exposures we experience today.
Does anyone else also have a hypersensitivity to noise, esp. when tired? (This is also a symptom found in insecticide poisoning). For example, my legs are often triggered by purring cat on lap, snoring husband, roaring airplane engines, noisy traffic, social conversations in the evening. It also is linked with a chronic irritable bladder (I haven't seen anyone else mention this), in that the symptoms nearly always begin after I get up to urinate at night due to excessive bladder irritation. They are also temporarily relieved by urination. I can see both of these patterns as also being linked to an underlying neurotoxicity from pesticides (or any of the 80,000 some odd synthetic chemicals in circulation today).
In my own life I had a period of about three years in my twenties when I was free of RLS and any other symptoms, characterized by a healthier lifestyle, regular practice of yoga, low stress, almost total avoidance of sweets, processed foods, restaurant foods, etc. I ate mostly whole grains, vegetables, salads, etc., a few dairy products and no meat. My lifestyle has since become busier and more stressful, with more travel and socializing, etc., and my diet has become more like the typical American diet, though mostly vegetarian.
If there is anyone with any grant money to do a medical study I would suggest testing pesticide levels in the bodily tissues of RLS patients, vs. healthy controls, also looking to see if there is a correlation with severity of symptoms. Levels can vary greatly, as I have seen in the literature a study finding that vegetarian women have about 5% of the pesticide level in their breast milk that omnivorous women have (due to foodchain bioaccumulation). Another possibility for research would be a genetic deficiency and other problems that interfere with normal elimination of or neutralization of neurotoxins.
My husband is a veterinarian and has a Ph.D. in immunology and we both have done a lot of thinking on disease and health in general and would welcome a dialog with others on underlying causes. Thank you so much for your great website. An invaluable tool. It's similar to something I've thought of starting myself in the past. The need is certainly there! Bless you.
Thank you for your very interesting letter and intriguing thoughts about RLS and our environment. Although many RLS sufferers have written in with correalations with diet, over-the-counter remedies, etc., unfortunately there does not seem to be any consistency or pattern with more than a very small minority of RLS patients. RLS is a very difficult disease to understand and it is even tougher to try to figure out what causes it.
I will post your letter on our web site and see if others can share and benefit from your experiences and observations.
Date: Friday, January 15, 1999 3:46 AM
Subject: RLS and pregnancy
I have been suffering from RLS on and off since I was a child. I am now 29 and have recently discovered that I am not the only one. My problem is that I am 2 months pregnant and the problem has gotten worse.
In the past I have taken a Vicodin at night and it always helped me, but now that I am pregnant I don't want to do that. And I cannot sleep at night. Is there anything I can do or take that is safe? I would really appreciate any info. you may have.
If the symptoms are severe enough to warrant drug therapy, then the sedative class of medication has been used for treatment (with the approval of the patient's obstetrician). Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.
Some doctors will use the narcotics, but please check with your obstetrician.
Date: Saturday, January 16, 1999 7:15 AM
I wondered if you have any advice for me? I am a 32 year old woman and have been suffering from RLS for a long time. I believe I have a milder form then some of the other individuals I read about. I don't have involuntary movements, but I do get that itchy feeling that I must move my legs or I will go crazy.
This happens primarily at night and interferes with my sleep. Although, it can sometimes happen during the day while I am working at my desk. This I don't mind so much because if no one is around, I can do a jig under my desk. The problem however was greatly intensified during my two pregnancies. In the third trimester I had to sleep on the sofa so my husband could get some sleep. (At least one of us did.)
I find myself going to the sofa lately even though I am not pregnant as the RLS seems to come for a long time, ebb and disappear and then return a month or two later. Then I put on the TV and kick up a storm on the sofa until I tire myself out.
Anyway, I am generally opposed to drugs as I don't want anything upsetting the delicate chemical interactions in my body and I am interested in finding out if there are any home remedies that might improve, if not alleviate, the situation. I heard once that the restlessness during pregnancy may be do to an imbalance between potassium and calcium in the body. Are there some foods that would help?
If anyone has any answers, I would be appreciative. I'm just not comfortable with medicating this problem.
There are a lot of non-medication treatments, but unfortunately they work only sometimes and only on a small minority of RLS sufferers. To check out all the alternative treatments go to our RLS Treatment Page, Other RLS Treatment section.
It sounds as if your RLS is at least of a moderate nature and I would urge you to consider using medical treatment. In expert hands, the right RLS medications can be chosen to relieve your symptoms and not cause any side effects or long term problems.
Date: Saturday, January 16, 1999 8:12 AM
I have been on Mirapex for 1 1/2 years after taking many of the other drugs (Neurontin, Permax, Sinemet, Parlodel, Ultram). Do you have any suggestions for what dose and timing works best with Mirapex. Also, do you have any suggestions for what will help with the insomnia I get from Mirapex. The Mirapex does completely control my RLS.
Thank you for any help you can give. I do appreciate your web site!
Barbara Jenkins (age 60)
The dose of Mirapex depends on each individual's needs. The average dose is 2-4 of the 0.125 mg tablets per day, but that can vary quite a bit. We always suggest to stay on the smallest dose that controls your RLS symptoms.
Mirapex may take up to an hour to start working, so we suggest that you take your dose about 1 hour before the onset of your RLS problems (for example one hour before bed if bedtime is when your RLS acts up). Mirapex will generally last about 6-8 hours, so that is the interval that it should be taken if all day control of RLS symptoms is necessary.
Some patients do get insomnia with Mirapex. Ambien or Xanax taken on an intermittent basis may be quite helpful. Changing to Requip (very similar to Mirapex, but somewhat different side effects) may also be of help.
Date: Saturday, January 16, 1999 8:13 PM
I am a retired lady of 69. In Nov 96 I started having extreme pain in my legs, from the knees to the ankles.I never had the creepy crawly feeling that so many people describe. All I ever had was pain, and it lasted all day & night.
It was in March 98 that I was diagnosed with RLS. During all these months the longest time I slept was about 30 minutes. Even during this short time of sleep my husband said I was moaning & groaning all the time. He would not let me sleep alone because he was so worried about me.
I have to admit though that the reason it took so long to diagnose was because when the doctor mentioned early on that it may be restless leg syndrome, I became very angry & said "you don't understand. My legs are not restless, they HURT!" It feels like it is the bone. I had all sort of x-rays, MRI, and all sorts of test. Finally, in March 98, when my doctor called to check on me, I just exploded. I said "I have had so much pain for all these months, and nobody seems to care, nor does anyone seem to know why".
He sent me home on Sinemet 25/l00 that afternoon. When I read the information sheet, I became alarmed because it only mentioned Parkinson's. Since my mother had Parkinson's I knew what it was. Nevertheless, I begin to take it and was better a week later when the doctor called back to check on me. I am still taking it also on .5mg Klonopin. I am able to sleep 6 hrs a night usually, but I still have pain when I get up, then all day, & when I go to bed at night.
What I would like to know is there anyone anywhere who has this much pain with this. I take 2 Extra Strength Tylenol twice a day, along with Ultram when absolutely necessary. I have to say the medications have helped just because I am now able to sleep. Also, we moved into a new home right before all this started. It is built on a slab. Could this make a difference?
Sorry to bore you with this long history, but there are so many questions.
Thanks for listening,
Frances F. from Alabama
It is still not clear to me that you have RLS. Although not everyone with RLS has the creepy crawly feeling in their legs (some do complain of extreme pain that is very hard to describe and feel as if it originates in their bones), the painful RLS sensations worsen with rest or trying to get to sleep and diminish with activity. From your description, it does not sound like you have this pattern of pain as your pain occurs 24 hours a day.
Klonopin will help anyone fall asleep, as it is a sedative, so that does not prove that you have RLS. In RLS patients, the Klonopin will calm down the restless feelings (which you do not have).
Tylenol generally does nothing for RLS. Ultram can be very helpful for many RLS patients, but as it is a pain killer, it will help any condition that causes pain.
If the Sinemet taken alone is helpful, then that would improve the likelihood of your diagnosis being RLS. If the Sinemet is not helpful at all, and your leg pain is not made better by activity/movement, then it is much less likely that RLS is the correct diagnosis.
A Reply from Francis F.
Date: Monday, January 18, 1999 11:00 AM
Subject: Re: RLS
Thanks for answering so soon. You have given me some more insight in my problem. In my original message I did not want to take up too much space, so I did not really go into detail as maybe I should have. The Sinemet did help some. I was on it a week before I started the Klonopin.
I realize that the Tylenol does very little good, but I have another problem. During this time when the pain has been so bad, I took so much Extra Strength Anacin until my stomach is one big mess. I got to the point that I would bleed so bad that it became dangerous. In fact I fell & hurt my leg and bled internally for much too long before I went to the doctor.
I was not worried about a blood clot because I knew my blood would not clot. I found out I wrong I was when I did see the doctor. But I always thought that taking anything over the counter was better than taking prescription painkillers.
The Ultram does help more than the others, but sometimes it makes me so deathly sick, I have to be very careful. Also, I have never had the "creepy crawly" feeling, but as I have started the Sinemet & Klonopin, I notice that I cannot keep my legs still at all. I am sure I do that all night, but I am asleep so I get help from that.
The worse thing I can do is ride, always having to stop very often. Before I started on Sinemet, I could not stay anywhere over 20-30 minutes. If I was in bed, I would have to get up. If I got up & walked, after that short time, then I would have to sit down.
I still think that part of my leg pain is due to the fact that my "retirement" home is build on a cement slab. I have Berber carpet, and recently put in carpet in my kitchen, something I always said I would never do. I have to wear very good shoes with good arch supports to be able to do anything. But I do have to say that there is very little time that my legs are not hurting. And it actually hurts very bad when I walk outside.
I do belong to a gym & I do try to walk there as much as I can. But I am never able to walk there very long at a time. But I must say that walking or any other activity does not stop the pain. I try to walk the little amount that I do,because I am trying to keep the rest of my body in at least fair condition.
Once again many thanks,
Frances F. in AL
Your medical response to Sinemet and inability to sit for long periods does support a diagnosis of RLS. It is possible that you have another superimposed problem that might be responsible for some of your leg pain, but it may be very difficult to figure out which other disease is responsible.
As your condition sounds quite severe, you might want to discuss changing to Mirapex instead of Sinemet. The Mirapex works better for severe RLS and has fewer side effects.
Xanax or Ambien may be better choices instead of Klonopin as there are easier to take drug holidays with (only 2 days off the drug every 2 weeks rather than 5-7 days off). You should also be taking drug holidays from Ultram (generally done on the alternate weekends when you are not on the sedative drug holiday).
Date: Sunday, January 17, 1999 3:20 AM
Subject: Restless Legs Syndrome
I'm sitting here at the computer reading your website, at 3:15a.m. Why? Because I don't have my Permax. And my legs will not cooperate to let me sleep.
I have had restless leg syndrome all my life, and it seems to run in my family. But I was the only one that pursued it through the medical profession. My rheumatologist knew right off to give me Permax.0.05 mg and I can take up to 4 tabs a day.
I have gone through 4 surgeries in the last two years, because of rheumatoid arthritis. I had to have both my knees replaced and the only saving grace was finding that Permax works for my RLS. Vicodan and some of the other pain relievers are to drying to the bowels and you wind up with other problems. Plus, there is the problem of addiction with the narcotics. If I could find a over the counter medication that really worked, I would go with it.
It is scary to think that you are going to rely on taking medications to sleep for the rest of your life, because like tonight I'm without my medicine because Longs Drugs was without the medication. So I have been taking two hour naps, than I get awakened with the old feeling of my toes drawing up and the aching in the bone, and having the uncontrollable urge to move and thrash your legs around. Sometimes the pain is so great that I lay in bed and just rub my legs and cry. What a way to live your life!
I have a surgery coming up on Feb 18, and I know that the hospital staff will not give me my Permax unless I throw a fit. People just don't understand! Luckily, my husband does. He has had the same problem and is taking Klonopin. But it doesn't seem to work for him as well as Permax works for me.
I had one doctor tell me that using Permax for a solution for RLS was like shooting yourself in the leg with a shot gun, to get rid of the pain. Why? All I know is it works.
I would really like to know where RLS comes from and how is it passed down genetically. My kids have it, one also has Lyme disease so its hard to tell what is going on with him.
Sincerely Sybil M.,
I cannot tell you why a doctor said that taking Permax for RLS was like shooting yourself in the leg with a shotgun as this makes no medical sense. Permax is very effective for many RLS sufferers and has been taken on a long term basis without problems by most who use it. The statement probably reflects the ignorance about RLS of the doctor who made it rather than any true medical facts.
The cause of the RLS is unknown. There is research going on to find the cause and for new treatments, but we are still far away from a full understanding of what is going on.
The genetics of RLS are not fully understood either. We do know that about 1/2 to 2/3 of RLS patients have a genetic component.
Date: Sunday, January 17, 1999 10:08 PM
I have had RLS for about 10 years now (I am 44) and I have discovered what causes this for me - any kind of cold pills. I cannot take decongestants, antihistamines, Vicks Formula 44 or any kind. This is very bad as I have lots of allergies and I have been prescribed Entex LA and Allegra both of which cause RLS.
I tried the new Coricidin HBP hoping that the thing causing my RLS was the "speed" ingredient that they took out and so far that is working.
Have you ever heard of "cold pills" aggravating RLS. For a while I thought it was my blood pressure medications so I changed the time I was taking them but because of my allergies I was always taking Sudafed or Entex LA.
My doctor rolls his eyes when I tell him my findings like I am a "kook" and he is just humoring me.
I hope that this might help you in treating some of the patients because I don't have RLS unless I take a cold pill.
Antihistamines and decongestants have been implicated in worsening RLS in a significant minority of RLS sufferers. There is no medical reason that I can think of to explain why Coricidin HBP would be better than Allegra, as Allegra is only a non-sedating antihistamine and has no "speed" (I assume this is the Sudafed like decongestant part) potential.
Doctors unfortunately know very little about RLS and will often roll their eyes when hearing almost anything concerned with their patient's RLS problems. I have found that almost anything is possible with RLS and thus will take all complaints and observations seriously.
Your observations are helpful. Although a significant minority of RLS patients are somewhat similar in response to cold medications, luckily, the majority of RLS sufferers can take these drugs without a lot of problems.
Date: Monday, January 18, 1999 8:19 AM
Subject: RLS and St. John's Wort
This e-mail is to thank "Jerry" for his e-mail (July 25, 1997 at 08:42:44 EDT) recommending the use of St. John's Wort for RLS. You mentioned that you had taken it for two nights and it seemed to be doing the trick. I bought a bottle as soon as I read your e-mail, have taken the same dosage as you, and have not missed an hour's sleep for the past 5 nights!
I have been suffering from RLS for the past 15 years, and over the past several years I typically miss three hours of sleep a night, usually waking up after two or three hours. If this continues to work, Jerry, you will have changed my life. I hope yours too is subsequently altered.
Thanks for passing on your testimonial for St. John's Wort. Hopefully others may get the same benefit that you have experienced. Let us know if the effect is sustained over the weeks and months.
Date: Monday, January 18, 1999 9:24 PM
Subject: Question about drugs
What does one do if in addition to the Permax and Vicodin taken twice daily for the RLS, the doctor prescribes 100 mg of Neurontin three time per day for polyneuropathy ? Is there any problem with the Permax and Neurontin together, or should we take one or the other?
There is no problem taking Neurontin with Permax and Vicodin. In fact, this is sometimes a combination used occasionally for RLS patients. There is a chance that the addition of Neurontin to treat the neuropathy might also help the RLS and thus reduce the amount of Permax and Vicodin that is needed.
A Reply from Barbara
Date: Tuesday, January 19, 1999 12:34 AM
Subject: Re: Question
What symptoms would indicate reducing the Permax and/or Vicodin with the addition of Neurontin if the RLS is fairly controlled to begin with? How would one know to pull back on the initial medications as the Neurontin kicks in, and which one, or both?
Also, when Vicodin isn't as effective during times of flare-up, we have a few people who switch to 1/2 Percodan with the Permax for short periods until the flare-up diminishes. Would that combination with the addition of Neurontin work as well?
If the RLS is completely controlled 100% of the time with with regular usage of Permax and Vicodin, then it might be difficult to decide if reducing these medications after adding Neurontin is appropriate. It is simple to try to cut down the Vicodin (by half, for example), and see if that is sufficient to cover the RLS symptoms. If it does, then that would indicate that the Neurontin is helping. The Neurontin may also decrease the amount and degree of flare-ups.
Using Percodan instead of Vicodin is a minor change and would not affect other RLS treatment. If the flare-ups are decreased with Neurontin, then less (if any) Vicodin would be required.
Date: Tuesday, January 19, 1999 11:39 AM
Im so delighted to find your Web site, and to find someone who has experience and knowledge of RLS.
Let me briefly review my history. In l985 I was diagnosed with fibromyalgia My complaints were sleep problems, painful hips occurring at night when sleeping on my side as well as other diffuse aches and pains. I saw a doctor in Boston who diagnosed the FM---a relief to have the problem identified. In the early 90s my sleep problems increased as well as the hip pain, and I was put on trazadone. This helped for a few years.
I also had uncomfortable feelings in my legs which I had mentioned to doctors, and was prescribed quinine pills; this did not help. I rarely mentioned this problem because I thought I was nuts! I have had the problem since college and it gotten worse and worse; I had trouble going to the theater without needing to get up; reading or watching t.v. at night was unbearable. Fortunately a friend told me about an article in Modern Maturity magazine which seemed to describe my problem. Needless to say, I was thrilled to find that my situation was something that was being treated.
In 1996 due to an increase in my leg problem I added Klonopin to my nightly regime. I went from 1-3 trazadone (50 mg) and to 1-2 clonazepin (0.5mg) and as I felt better I often tried to reduce or eliminate both or one and found myself without sleep and very depressed. With both drugs I slept better. My aches and pains disappeared. I believe this was due to the fact that I was sleeping better.
However the restlessness began to increase, and I was often up for longer periods. On the nights when I slept well I felt terrific the next day. There was a major contrast in my "being" between getting a decent nights sleep, and experiencing a series of nights without enough sleep. I felt lucky to have 6 hours of sleep.
Im an active person. I play tennis 2-3 times a week, work out, walk and take art classes at a local college. My life is full but marred by tiredness and some depression. Again which I feel is due to lack of sleep.
Because my RLS was again becoming more of a problem I decided to find someone who might know more about treatment; my primary physician recommended I see a sleep clinic physician. This physician recommended Permax (.05 mg) along with the Trazadone, eliminating the Klonopin. Im now up to 4 Permax and 3 Trazadone. This is over a period of 6 weeks.
The Permax has eliminated most of the RLS (although I still am bothered in the early evening and sometimes during the night.) The downside is that the FM symptoms of very painful hips have returned (hip pressure points) and I wake during the night, often having a problem returning back to sleep. Im also constipated, have buzzing in my ears, and occasional headaches. The side effects are rotten, and my sleep continues to be interrupted and Im extremely tired.
I suggested to my doctor. that I add Xanax to the Permax, but he said its just like Klonopin, and since I was finally off it I should continue to do what Ive been doing. and continue to increase the Permax. He is not open at all to the Xanax, says it has the same long half life as Klonopin which is in conflict to what Ive read in your material.
Im not hopeful. Do you have any suggestions?
Sue H., Tucson, AZ
Xanax does not have the same half life as Klonopin. This will vary from patient to patient, so the half life stated on our RLS Treatment Page are averages. If regular drug holidays are taken (one weekend off the drug every 2 weeks), then the chance of tolerance and addiction is rare.
Ambien is a sedative with a very short half life that is not in the benzodiazepine class (Xanax, Klonopin, Valium, etc.), is likely not addictive (although drug holidays are still recommended). Maybe your doctor will be more amenable to Ambien.
Date: Tuesday, January 19, 1999 4:43 PM
Subject: PLMD and clonazepam
I have severe PLMD and have been on 10 mg of Valium, then 4 mg of Klonopin, and now 6 mg of Clonazepam. I often have to take 8 or 10 mg (maximum) before the jerking stops.
What dangers do I face taking this level of Clonazepam, what are the long-term effects, are there any side effects, and can I replace the Clonazepam with something like Butcher's Broom?
I am physiologically addicted to Clonazepam since I get withdrawal symptoms if I run out and can't get an immediate refill.
You are on massive doses of Klonopin (clonazepam). Most RLS patients need only 0.5 mg to 1 mg and the most that I have ever seen used is 2 mg. You should be tapered off the medication slowly only under doctor's care. More severe withdrawal reactions (such as seizures) can occur with sudden stopping of this class of medication.
The Parkinson's disease medications (Mirapex, Requip, etc.) work very well for PLMD and thus may help eliminate the need for bedtime sedatives.
Again, please do not attempt to stop your Klonopin without physician supervision.
Date: Tuesday, January 19, 1999 8:39 PM
This is fascinating. I often get what I call "Twitchy legs" in the evening, while watching T.V., at a movie, or riding in the car. It happens when I sit or am lying down. I always thought it was just bad circulation. It's annoying, but not painful or terribly unpleasant, just strange. It's a tingling sensation, that makes my legs feel very restless and I have to jerk them to get rid of it.
I've had this for about 5 years and I find taking a hot bath helps. I was surprised to see the wealth of information that's out there. I'm glad I happened upon your website!
As long as your RLS is mild, your treatment is fine. If it does get worse you do have lots of options.
Date: Thursday, January 21, 1999 5:13 PM
I have put up with "the jerks" for as long as I can remember. My mom has always had the same problem. Most other people think we're nuts! Like Donna, I can't go to a movie that starts any later than 7 p.m. (and that's pushing it sometimes!) I have never mentioned it to a doctor, never thought it was considered a legitimate problem.
I don't know anyone else but my mom with this problem. Either that, or no one wants to admit it. I don't feel any pain or cramping whatsoever with RLS, just a very strong need to get up and walk around or will sit in my seat and shake my legs vigorously up and down. It feels like I'm crawling out of my skin. I usually feel that the RLS comes when I am "overtired". Nice to know other people have this problem, too.
Rest assured that RLS is a very common problem (at least 5% of the people have it). Most think that they alone have this strange problem (like you), so not much is discussed about RLS.
As you can see from our web site, there are lots of safe medical treatments for your symptoms. You do not have to suffer in silence.
Date: Thursday, January 21, 1999 7:39 AM
Subject: Re: RLS/Rheumatoid Arthritis Connection
I have found that when I take Neurontin with my evening Restoril I sometimes do things that I don't remember or, as my wife says, "Have an attitude." I find this concerning. I take 900mg Neurontin at 9 am and 3 pm and then 1500 mg with 30/60 mg of Restoril at night before bed.
I suspect it is the high doses of Restoril that is causing your problems. The maximum dose of Restoril is 30 mg (not 60 mg). Benzodiazepines (which includes Restoril, Valium, Halcion, etc.) can cause memory problems. The Neurontin may or may not be adding to the problem.
You should be taking regular drug holidays (at least 2 days off the Restoril every 2 weeks) on the Restoril to avoid problems with tolerance and addiction. You will be able to tell if the Restoril is the source of your problem when you are off it on your drug holiday.
Date: Thursday, January 21, 1999 9:50 PM
I have had Restless Legs on and off for my whole life ( I am 33). I say on and off because there are periods of what seems like a year or more when I don't experience the symptoms. The fact that it is nearly 1:00 a.m. and I am sending e-mail to strangers on the internet indicates that now isn't one of those periods.
I really only learned that I wasn't alone within the past year or so. Its amazing to me how many letters I see. I bet everyone thought they were the only one who felt this way at one time or another. Especially before forums such as this became available.
I don't currently take anything for it. I usually find just getting out of bed trying to take my mind off it for a while helps. If I try to make it go away it won't. I usually go sleep on the couch so I can be away from the distraction of my husband's snoring. RLS combined with any other sleep-robbing element is too much. I think I will try the Q-Vel that I read about in these letters.
Best wishes to all in the new year. Try to get some rest... Ha Ha.
Q-Vel is quinine. Despite a few RLS sufferers claiming relief with this medication, it really only works for common muscle cramps, but not for most RLS patients.
You are definitely not alone.
Date: Sunday, January 24, 1999 5:41 PM
I have had RLS since I was 15 a mere 37 years ago. I have always called this horrible sensation "the Jiggies". There is no other response when you get this feeling but to jig. Sounded O.K. when I was 15. It just seemed to stick.
Date: Tuesday, January 26, 1999 3:28 PM
Subject: circadian rhythms
I have only recently been doing research on RLS, although I have had it for many years. Somewhere in the mammoth amount of information I read yesterday, I came upon a comment of the relationships between RLS and circadian rhythms. If memory serves, it suggested one might need to go to bed a little later and rise later than the societal norm. Can you comment? What does one do when this is not possible?
Sharon in Brazil
RLS does get worse in the evening and better in the morning. Many RLS patients find that they cannot fall asleep until the early morning hours.
We do not suggest that you try to adapt your sleep schedule to fit the circadian rhythm of RLS, but rather get medical treatment which should eliminate your RLS symptoms.
Date: Wednesday, January 27, 1999 5:44 PM
I have just finished exploring your web site and wanted to contact you to see if this is the answer to my husbands condition. From the information that you published I am intrigued by the discussion of the Periodic Limb Movements in Sleep.
My husbands behavior has not been described in any of the letters that you have published. When he is "falling asleep" if he is lying on his stomach, he will kick only his right leg (which must always be on the outside edge of the bed) bending from the knee down to his foot and bounce it off the mattress. It is up/down/up/down constantly until he is asleep. This routine repeats several times during the night should his sleep be broken for any reason. If he is lying on his back his right leg will be bent at the knee and it will drop all the way down to the right and then return back to the middle and repeat.
My husband is 37 years old and currently he takes no medication/does not drink or smoke. He remembers having this condition from childhood.
He did see a Sleep Disorder Doctor who tried to view his routine at an over night stay at a sleep disorder clinic, but with all of the wires he was not able to roll over and fall asleep. From the brief intervals of sleep (on his back) he did have the technician said that there were times that he stopped breathing. The pattern of the kicking is not on a daily basis but when he has a lot of things going on the activity seems to increase.
Any suggestions or comments would be greatly appreciated. Thank you for your time.
Kim M. R.
Your husband likely has a mild case of PLMS. The leg movements are actually quite typical of PLMS, but they may occur at any time when the patient is at rest, and falling asleep is a not unusual time for this to happen.
Unless the PLMS cause his sleep to be interrupted (the result of this would be excessive daytime sleepiness), there is no reason to do a sleep study or have further investigation or treatment of this mild PLMS. It is otherwise harmless (unless the spouse gets bruises from the leg jerks) and can be ignored.
Date: Thursday, January 28, 1999 9:55 AM
Subject: some help wanted, please..
I have been suffering from pain in my legs (especially on the rear side of legs including feet). I can feel this pain only when I go to bad and I cant sleep for a long time. I went through some information about RLS on the WEB and I feel like the symptoms match with RLS. I don't feel this pain during working hours. Most of the time during day, I sit in a chair.
I recently increased my coffee drinking from 2 to 4 cups a day. According to the info about RLS on web, it may cause the problem,. I will go back to 1-2 cups a day and see if it helps.
The other thing that clicks my mind, is that I am very new to US and never been to temp below 20F and it's freezing here in Utah. When I cover my legs with warm socks, I feel better. Secondly, during pain I want to stretch my legs and foot-leg joints. That sometimes causes a cracking sound and that also gives me a better feeling. I would be grateful, if someone could advise me on how to treat these symptoms.
If your problem is mild, then just stretching exercises should do. However, if the problem is severe enough, you should see a physician and discuss the drugs on our web page and start treatment.
Date: Thursday, January 28, 1999 2:12 PM
Subject: Husband's Restless limbs!
My husband has been fighting the restlessness in his legs and arms for over 20 years. His father has only the restless legs. When my husband stopped smoking the disorder got more severe.
Two questions, does quinine do any good, and is there any link to Parkinson's disease?
Any help would be appreciated,
Quinine helps very few RLS patients. There is no link to Parkinson's disease other than most of the Parkinson's disease medications seem to help RLS. In fact, if he does have severe RLS, the Parkinson's disease medications should work very well to help him.
Date: Sunday, January 31, 1999 7:49 AM
Subject: Restless legs/feet
I am a male professor, now just 78. I've had restless feet since my teens. My condition worsened over the last decade.
I have tried acupuncture, quinine, and now Sinemet 25/100. One pill every 4 hours seems to help and last week has been bliss. Frequent walks when symptoms are imminent also helps. I notice that a sensitivity in my upper right arm below shoulder is a warning of a restless feet "attack".
I am also trying a naturopathic approach.
Sinemet can be very helpful for RLS. Be careful, though, as more than 2-3 of the 25/100 tablets per day can result in trouble (see our RLS Treatment Page for more information on rebound and augmentation caused by increased doses of Sinemet). If you need that type of Sinemet does, then consider a change to Mirapex, Requip or Permax. They work as well or better than Sinemet with much fewer side effects.
Date: Monday, February 01, 1999 6:54 PM
Subject: RLS misdiagnosis and Mistreatment
I have suffered from RLS, probable since birth. After being actually laughed at by several doctors, I gave up until I discovered RLS (and could put a name to it) in Omni magazine several years ago. After a couple of false starts, a new doctor prescribed Sinemet, but I, like others, had augmentation problems and loss of effectiveness, as well as only partial, inconsistent relief.
In 1984, I suffered post traumatic stress coupled with physical exhaustion from working 30-100 hours/week. I took antidepressants for 10 years like a good girl, complying when required, and being ignored by psychiatry.
Anything that permitted me to sleep was taken away from me. My personal worst record, which I survived twice, was 5 days and nights with no sleep at all (due to the treatment). Eventually, I became suicidal, not from emotional problems, but from simple sleep deprivation. Complete disability, classified psychiatry.
All letters here are sad and interesting. I am collecting RLS misdiagnosis stories for (hopefully) publication directed at doctors and for public education. Maybe it would help if the name was changed from RLS to TLS... Tortured Limbs Syndrome. Someone said, it's too late to change it. It's never too late.
Anyone with a misdiagnosis story, please e-mail me.
Date: Monday, February 01, 1999 12:36 PM
I am 51 years old and live in Socorro, NM. I have suffered with this malady since I was a small child. After talking to my son last weekend, it appears he also has it. My mother has suffered form RLS since she was a small child. Through the years I have tried hot baths, ibuprofen, valerian root, Tylenol #3, and recently went to codeine. Nothing really seemed to work for more than a couple of hours a night.
Now I have just begun using Kava Kava and Ultram. Keep your fingers crossed, so far so good. Basically the symptoms are most noticeable at night around sunset when from my thighs to my feet feel like something is moving around in them and I have to move. As I get older the symptoms are beginning to be noticeable during the day.
For years I used to get up at night, walk around or eat something and then go back to bed. Recently, the RLS has gotten so bad I only get a couple of hours sleep at night. Drinking myself silly used to work sometimes, but now that doesn't even work anymore. I empathize with those who have wanted to commit suicide. RLS is so maddening that it has destroyed many relationships for me because no one believes what you tell them.
Until a year ago RLS was unfamiliar to me. When I first read the symptoms I knew it was what I have suffered from for so very long. The current love of my life understands to some degree what I suffer through every night.
Consider trying the Parkinson's disease medications (Mirapex, Requip or Permax). They can do wonders for many RLS sufferers. If the valerian root and Ultram do not continue to help you, please speak to your doctor about the Parkinson's disease medications.
Date: Monday, February 01, 1999 11:59 AM
It had been suggested by you that I try Permax. I worked myself up to 4 of the .05 mg pills and I discontinued Klonopin that I had been taking for 3 years. The Permax controlled my night time restlessness, but added other uncomfortable symptoms.
The major symptom was pain in my legs, and especially on the hip pressure points when sleeping on my side. I was awakened at night with the pain, and had trouble sleeping. I also was constipated, had headaches and a queasy stomach, developed tinnitus (buzzing/ringing in the ears).
I added two 5 mg Ambien tablets which helped with the pain. My physician was unhappy with using Ambien, especially after I had been off the Klonopin for 4 weeks. He said I was addicted to the sleep medication, and that the Permax had nothing to do with the pain I was experiencing.
I've now dropped the Permax and am using the Ambien, but after three nights without the Permax I'm finding that the restlessness is now returning, and the tinnitus still continues in my ears. Is the Ambien covering up my pain,and the other side effects are not caused by the Permax?? Maybe I should return to the Permax or try Mirapex.
Do you have any suggestion?. Thanks for your interest and help.
Susan H., Tucson
The Parkinson's disease medications work well for most RLS patients and as demonstrated by the help that Permax gave you, this is also the right class of medication for you. Permax does have side effects that affect a significant proportion of users, but there are other medications in the same class that have a different side effect profile (Mirapex, Requip) and should help you.
Ambien is not a benzodiazepine (Valium, Klonopin, and most all of the other sedatives/sleeping pills) and is reportedly not addictive. I would still urge caution when using Ambien and advise regular drug holidays, or even better just use it intermittently (3-4 days per week). Once the RLS is controlled by other medications (Mirapex or Requip), then little or no Ambien should be needed.
The side effects of Permax (including the tinnitus) should resolve with time after discontinuing the medication.
Date: Tuesday, February 02, 1999 12:50 AM
Subject: Restless Body in Maryland soon to be in Orlando, FL
Occupation--RN, Educator in Chronic Pain Management
I was diagnosed with Restless Leg Syndrome and Nocturnal Myoclonus in 1990, two years after I was diagnosed with Fibromyalgia Syndrome.
What led me to a physician was problems traveling by train in a commute of ninety minutes to work. During both the morning and evening commute I would be quite tired and bored and would try to sleep. But once asleep my body would start to jerk just a few minutes after I fell asleep. This would often wake me up with a start, and would startle by seat mate. Later, my wife, a chronic insomniac and light sleeper, complained that I was moving my legs constantly in the bed and frequently my whole body was jerking as well. She said we could sleep together no more, and since about 1990 I have had to sleep in another room.
Over the years as the fibromyalgia syndrome slowly got worse with longer episodes of moderate to severe pain, easy exhaustibility and difficulty falling and staying asleep the Restless Legs and Periodic Leg Movements during Sleep also intensified and changed its character.
I initially began to experience discomfort in my legs which I sat down to relax at the end of the and when retiring for sleep. None of my physicians recommended any remedy to treat this problem and I was uninformed at the time. Later, the discomfort increased and since them when I have laid down to sleep I feel compelled by creepy crawly sensations or dysesthesias to writhe and stretch my legs like serpents until my sedative kicks in and I fall asleep. Over the past two years the fibromyalgia has gotten much worse and the pain and fatigue has been worsened by frequent problems with a cardiac complication, Neurocardiogenic Syncope, also called Vasodepressor Syncope, Vasovagal Syncope and Neurally Mediated Hypotension, which causes me episodically or paroxysmal to become lightheaded, weak, exhausted, nausea with severe headaches, and upset stomach besides, sometimes culminating in fainting.
The Restless Legs has gotten much worse and might now be called Restless Body Syndrome. The discomfort upon rest extends now to my neck and shoulders, my hands and feet and sometimes my lower back. When I start to feel cramped when relaxing, attempting to sleep or working at the computer in my work life, after a few minutes the symptoms begin and intensify if I resist them. I used to tolerate 6 to ten hours at the computer, but now I barely tolerate three and this has significantly impaired my ability do my joy and support myself and my familyto my utter frustration and dismay. My hands and arms and sometimes my legs burn like they are sunburned. The feeling resembles the akathisia I experienced during the 1960s when I was being treated for anxiety with Phenothiazine "major tranquilizers." I had to stop taking those after a few months. The discomfort was so bad that I finally built up the courage to disobey a "doctor's order." But in my current situation I haven't found anything that I can stop to stop the discomfort.
Between the RLS and the Fibromyalgia Syndrome I count myself fortunate if I sleep four or five hours at a stretch, but when I wake up I tend to still be tired and uncomfortable.
Over the past three years, I have tried Clonazepam 0.5 mg twice a day without experiencing significant benefit. I have in the past tried Ativan 2 mg twice a day without experiencing noticeable benefit. I don't tolerate narcotics very well as I find them too sedating and nauseating, but experience with brief runs of Tylenol III and Percodan for other health problems seemed to have no significant effect on the discomfort. I have tried Tramodol 50 mg twice a day for pain associated with fibromyalgia syndrome with no noticeable effect on the restless legs. And recently a neurologist prescribed Gabapentin 300 mg twice a day for the restless legs. I have been taking it for about a month and a half with no noticeable effect at the current dose beyond mild transient sleepiness.
For the Essential Hypertension from which I've suffered for sixteen years and for the Neurocardiogenic Syncope I'm taking 100 mg of Atenolol once a day, without noticeable affect on the RLS.
For depression secondary to chronic pain, which tends to be seasonal in me most pronounced during the shortest days of the year and for the Neurocardiogenic Syncope I am taking Sertraline 200 mg once a day, without noticeable effect on the RLS.
I used to take 50 mg of Amitryptiline to facilitate sleep but had to stop taking it after several months because I typically work up "hungover" and it seemed to aggravate the RLS.
I currently have a prescription for Carisoprodol 350 mg to facilitate sleep, but I think I've developed a tolerance to it, because its sedative effects are might less intense than when I first started taking it three years ago. And it seems to intensify the RLS symptoms somewhat. I rarely take it now and only do so out of desperation to sleep.
I frequently stay up till the wee hours of the morning and typically can sleep only when I feel exhausted. As I typically wake up tired and yet have to do all the work for my business and take care of my two year old daughter six hours a day besides I am often so exhausted by midday that I collapse on my bed to take a 2 or 3 hour nap.
I feel terrible. And even though I count myself as a scholareducator in the health sciences I feel I have lost sufficient perspective to know what to do or where to go to get help for the problems I am experiencing. I would once like to see a physician who doesn't look to me for an orientation to the findings of research on my problems but rather is a scholar with knowledge much greater than mine and has a soothing bedside manner besides. Any guidance anyone can provide in this matter I will most appreciate.
As you have not gotten much help from the benzodiazepine sedatives (clonazepam and Ativan), it would be better to stay off this class of drugs. Addiction without benefit is not worth trying these drugs in your case.
You have not indicated that you have tried the Parkinson's disease medications yet. If not, please speak to your physician about Mirapex, Requip or Permax as soon as possible.
Date: Tuesday, February 02, 1999 1:05 AM
Subject: Re: Valeriana Officinalis for RLS
I read a letter in Patient Letters Page 10 in which the writer inquired about the Valerian for the treatment of FMS, which she had heard was popularly used in France. The physician replying to her indicated that he had not heard of any scholarly research supporting it use as a therapeutic agent.
Let me advise you that I have done a literature search in Index Medicus on the topic of Valerian with these results:
It appears to be a popular remedy in continental Europe, especially Germany where its manufacture is strictly regulated by the federal government. In the United States, however, Valerian and other medicinal plants are not regulated as drugs. Instead they are considered foods according to the current liberal laws concerning remedies of "alternative medicine."
Several studies have appeared over the years, mostly in Europe, evaluation the chemical components of Valerian and their medicinal properties. A few have even examined the potential benefits of Valerian as a skeletal muscle relaxant, a sedative and an antianxiety agent. The findings suggest that Valerian is a mild central nervous depressant which may provide provide relief of mild anxiety, insomnia and muscle tension.
The chemical studies which have primarily appeared in the journals, Planta Medica and the Journal of Ethnopharmacology have identified two active pharmacological properties of Valerian, one which produces sedation, etc., without apparent adverse effects and another produced in miniscule quantities which is carcinogenic in animals. The authors of these studies argue that the tiny risk of cancer associated with long term use of this plant drug does not warrant not using it for the above stated purposes.
Rich V. W.
There have been some studies in both the English and non-English language literature about Valerian. Many of the studies do support that it may have a mild effect on promoting sleep (and stage 3 and 4 deep sleep), but the results have been somewhat inconsistent and not necessarily reproducible. There are also reports of significant toxicity occurring in sporadic cases.
Date: Tuesday, February 02, 1999 8:52 PM
I am trying to get my doctor to try me on Mirapex for my RLS. He says he needs more data, but I don't even know where to go as it is so new. Have you any suggestions on where he might obtain more information. Anything you can do will be appreciated as I am desperately trying to get off Sinemet.
You can either refer your doctor to our RLS Treatment Page, Mirapex section or copy it yourself and bring it to him. You can also refer him to the article in the Mayo Clinic Proceedings, June 1998 which discusses the use of Mirapex in treating RLS. Mirapex is generally much better and safer than Sinemet for RLS.
Date: Wednesday, February 03, 1999 1:41 PM
I have found your RLS pages very helpful. I have been taking Mirapex for four months. I now find the symptoms recurring. Since I am on a very low dose, I can still increase it safely. But I am worried about it losing effectiveness. Since is it quite new there is not much known about it. Are there any recent studies?
In most studies, there was not much of a tolerance (loosing effectiveness with time) problem with Mirapex. Also, there is no cross tolerance with Permax, so if one becomes ineffective, then the other one may still work.
Check with your doctor, but you should have no problems by increasing slowly on the dose.
Date: Wednesday, February 03, 1999 6:30 PM
I had sleep apnea and nocturnal myoclonus. Surgery eliminated sleep apnea. The PLMD I'm told by my significant other does not occur but, I have RLS. For 6-7 years I lived alone and the amount and type of medication I was on, well, only my two cats knew of any sleep difficulties I was having. I didn't know. I was taking trazadone to keep me asleep. Other medications were Wellbutrin, Claritin-D, Benazepril, Sertraline, clonazepam, Docusate Sodium, Ibuprofen, Alprazolam, Diphenhydramine, theophylline, Rhinocort nasal & Albuterol spray.
Two years ago, my significant other came into my life. I found I was impotent. So over 8-12 months, I systematically started eliminating medications, under the doctors help. I got down to only about 3 medications about 10 months ago and have been doing very well. My impotence has gone, but I'm not as long lasting as I once was-(guess old age -55) Six months ago RLS started in and is getting worse. It has only been in the past 2-3 months that we have been able to spend any entire nights together. (Her sons finally left home -one married, other college) At home I wake up 10-20 times a night. Sometimes because I just have to move/flex my limbs and change position other times I simply just wake up. I can not stay asleep more than an hour or so at time. When I'm with her, l have to get out of bed and go to the couch to keep from keeping her up all night.
I am currently on Wellbutrin 300 mg, Lisinopril 10 mg, Azmacort spray &Flonase nasal spray on a regular basis. I use Xanax .5-1 mg - anxiety, and Albuterol spray only as needed. For RLS I am trying Clonazepam 1mg, Xanax .5 mg, Ibuprofen 800 mg, and Melatonin 3 mg at bedtime. I have been doing this for about 2½ weeks. I have not had any benefits as yet. Nothing has changed. My doctor prescribed gabapentin 300mg if the above doesn't work.
Questions: Is the above a good combination? How long should I wait for results? Is gabapentin the next step? What other medicines/combinations should I try? This situation is affecting our ability to be together and we want a life together. Being able to simply snuggle-to-sleep together means a lot. We've both been without someone for too many years. It is also, of course, affecting my work - memory, concentration, emotions, not energetic, procrastination.
Thank you in advance for any assistance/information/guidance you can provide,
Clonazepam and Xanax are both benzodiazepines (the first being very long acting and the later relatively short acting) and thus do essentially the same thing and act on the same receptors (regardless of whether they are being marketed for sedation or for sleep). Clonazepam often causes daytime sleepiness (due to its long action) and therefore, we do not like using it. Xanax works better and you only need 2 days off every 2 weeks for your drug holidays (which should be taken regularly to avoid tolerance and addiction).
RLS is only present while you are awake, so if you are waking up a lot at night it must be due to something else. PLMD is still a likely possibility and you do not necessarily have to have visible leg jerks with this.
The Parkinson's disease medications (Mirapex, Requip and Permax) work very well for RLS and PLMD. Discuss these with you doctor and see if they may work better for you. Neurontin (gabapentin) is a good medication for RLS, but the Parkinson's disease medications are usually more effective.
A Reply from Kurt M.
Date: Wednesday, February 03, 1999 9:39 PM
Subject: Re: RLS/PLMD
I was on clonazepam for years and did not experience any daytime sleepiness.
Yes, your right, RLS being while awake now that I think of it, but I would actually wake up having to flex/stretch my legs, etc. I know I'm having RLS right now having been on couch doing internet stuff for hours. In the past, when that happen (watching TV at night after having taken my Rx) I took it as a sign to go to bed, I did not link it to RLS.
Ever since the sleep apnea, I've always had a problem staying asleep - not going to sleep - just staying asleep. That's when I was put on trazadone. Boy, 15 minutes after I took that, I had better be in bed or I was bouncing off the walls going down the hallway, trying to keep my eyes open. I didn't like that that or some of it's other side effects.
I understand what you say about PLMD not having to be a virtual jerk (which is what I had before and upset the ex). I did not realize this. So it is possible that I have RLS and PLMD with PLMD not necessarily being an active type movement - I just wake up needing to change positions.
Again, regardless which treatment I use, when should I expect some kind of results? 24 hrs? a week, month? How long before I should start checking out a new procedure?
I will indeed discuss this with my doctor, and thank you for your help and informative information. I hope to hear from you again.
You got the gist of what I meant about the PLMD not being visible (we often pick this up only on the EMG monitoring on sleep studies). Over 85% of RLS patients have PLMD.
I would recommend trying any regimen for about one week before changing (that includes increasing the dose or switching to another medication). Some medications need to be at a higher dose for some RLS sufferers before they become effective. If the medication is not working well once significantly above the average dose range (check our RLS Treatment Page for this information), then consider changing to a different drug.
Date: Thursday, February 04, 1999 3:54 PM
Subject: Just another letter
I have been a life long sufferer of RLS. I remember my mother often slept on the couch and when I got married, I found out why! Our husbands were getting beaten up in bed.
In any event, alcoholic beverages of any kind will almost guarantee an evening of RLS misery. Caffeine, or any other substance, doesn't seem to be an issue for me.
Relief? Homeopathy was the single most effective treatment that I have gotten. Because Homeopathic remedies are prescribed on an individual basis, I can't recommend a particular remedy. For that you must seek out a homeopath in your area and go for an interview. You can go to this website to find a reputable homeopath: http://www.dimensional.com/~stevew/referral.htm
Prior to Homeopathy, I used 5 mg valium when times got really rough. I also bought a hot tub which really helps a lot if you sit in it right before going to bed.
Good health to all,
Phyllis B. S.
Date: Sunday, February 07, 1999 9:32 AM
I have medium severity RLS without PLMS which I treat with Sinemet, 1/2 to one of the 25/100 tabs before bed plus either Permax (.125 to .25 mg) or Mirapex (.25 to .5 mg) at 9 PM or so. This regimen gets me by although I still have a fair amount of discomfort as well as unpleasant side effects from the Permax or Mirapex.
I have some daytime symptoms but manage these just by changing my activity till they go away. My discomfort is just like the classic RLS feelings that everyone describes, often coming in waves every 20 seconds or so, sometimes constant. But often this leg discomfort is replaced by a feeling of general restlessness in my trunk/chest and is NOT at all the same as the legs feeling. In other words it is not restless arms or restless body syndrome which I hear described--it has a distinctly different quality.
I rarely have both types of feelings at the same time but find that the general, non- legs restlessness is much harder to tolerate--if I try to ignore it I feel like I am going to explode. Typically I might wake up in the middle of the night with this feeling and have to get up and pace around and hope that it subsides.
Do you think this is just another variation of RLS or some other problem of an entirely different nature? One clue--when I had a kidney stone problem I was taking opiate pain killers and noticed a complete absence of any kind of restlessness at all.
Thank you so much,
One can never be 100% certain, but I think that the restlessness that you get in your trunk area is just a variant of RLS. The feeling can be somewhat different as different muscle groups are involved, but the typical response to opiates and the feeling of restlessness that makes you want to move are quite peculiar to RLS.
You might want to consider occasional opiates (Darvocet to Vicodin) to touch up you RLS on an as needed basis only. Neurontin may be another choice if you are having trouble tolerating the Parkinson's disease medications.
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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