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Date: Wednesday, September 16, 1998 9:27 PM
Subject: RLS disability
I have had RLS for 36 years. It was always manageable until I entered peri-menopause about 3 years ago. I am awake about every 45 minutes with raging RLS that now extends from my lower back down to my calves. I have tried everything and the only seem that seems to help is Sinemet combined with pain killers. Sleeping pills make me groggy. I am a health professional, use sharp instruments and do very precise work that requires an alert mind. My neurologist is hesitant to prescribe any painkillers which seem to help my Fibromyalgia as well. I try to take drug holidays, and when I am a complete zombie from no sleep, I take a Restoril or two and go to bed at 7:00 P.M.
At this point my concern are my patients. I sometimes feel concerned about my abilities to do a complete and professional job. I work as hard as I can to my best, but often forget things and ask my patients 2 or 3 times the same questions about their health histories,etc. Do you know anything about disability in relation to this disorder? I am not anxious to leave a profession I have loved for 25 years, but I am often concerned about how much longer I can do a good job on no sleep.
Thanks for all your help. I do hope some help arrives soon. My mother, sister, brother, grandfather, 2 daughters , 2 nieces and several aunts and uncles suffer from this. Bless your for you time.
R.D.H
Medical Reply
. It is difficult to figure out what may help you, but most RLS sufferers can do very well if the proper combination of medications can be found. It does sometimes take trial and error combined with a lot of expertise to achieve that goal, but it can be done. You should seek the help of a doctor who is well versed in RLS to help get you back to normal so that you can work and feel better.
Date: Thursday, September 17, 1998 9:47 AM
Subject: symptoms
I have been diagnosed with RLS. My question is this: I don't have trouble sleeping at night and do not often wake myself up because of RLS but my partner has problems sleeping in the same bed because of my leg movement. Looking through all of the medications available I'm a bit confused. I would like to find something, preferably non-prescription to try before I request medication from my doctor I do not have any problems during the day but symptoms start in the evening. Can anyone make some suggestions.
My doctor suggested Vitamin E. Does that help?
Barbara G.
Medical Reply
The leg movements, which are often jerking in nature, are called PLMD (Periodic Limb Movement Disorder). They are usually harmless, unless the limb movements cause arousals during sleep (in which case the result is usually excessive daytime sleepiness). The movements are very common in RLS patients (over 90% will have this).
Unfortunately, there is no treatment for PLMD that is not prescription drug related (including Vitamin E). Sedative medications will prevent the arousals and may or may not prevent the actual jerking movements. Parkinson's disease medications, such as Permax, Mirapex, Requip, and Sinemet can be used to prevent the PLMD, but that would be excessive treatment just to treat your bed partners problem. I would rather suggest that you get a bigger bed with more room for your legs to roam. Some PLMD patients have gotten twin beds which they separate a bit at sleep time.
Date: Friday, September 18, 1998 6:38 PM
Subject: RLS
I have been taking Klonopin for about six weeks, it is working great, I try to take it early enough so I don't feel too groggy in the morning. I have a friend who is pregnant, she has RLS also, what can she do?
I had been taking Elavil prior to this, thinking I had insomnia, it wasn't until I tried to decrease my medication to 25 mg. that my restless leg started acting up again. Now I know the RLS came before the insomnia.; I just thought I had the "heebie-jeebies". I thought any Dr. would think I was crazy.
I"ve had one million hot baths in the middle of the night, rubbed my leg with "flexall" type ointments, several glasses of wine, and walking around the room a whole lot.
Thank you, thank you, thank you, I would never had gone to a Dr. had I not found your sight.
Medical Reply
It is great to hear that our web site has helped another RLS sufferer get relief from their symptoms. I would suggest that you have your doctor consider using Xanax or Ambien instead of Klonopin. Even though you do not feel groggy with the Klonopin in the daytime, developing tolerance is still a problem without regular drug holidays. Due to the long acting nature of Klonopin, a minimum of 5-7 days is needed compared to just 2 days off the drug with either Ambien or Xanax (short acting drugs).
Check our RLS Treatment Page or the last letter on Page 13 to get more information on treating RLS and pregnancy.
Date: Sunday, September 20, 1998 12:13 PM
Subject: Comment for R.D.H. - letter Sept 16
R.D.H. said her RLS has been worse since peri-menopause. For me, since having a hysterectomy 2 years ago and being on estrogen replacement therapy, I'm convinced there is a big connection with estrogen and RLS. Even before the hysterectomy, my RLS flare ups were cyclic in nature with the fluctuations of hormone levels. Maybe there is a connection for her.
Tina N.
Medical Reply
We have heard from many female RLS sufferers who have noted a relationship or their symptoms to their menstrual cycles. It stands to reason that menopause could have a similar effect/
Date: Sunday, September 20, 1998 2:16 PM
Subject: Sudden onset
I am a 37-year male who just slammed into the RLS thing about 2 months ago. The sudden onset occurred while undergoing more drug experimentation for a chronic benign back pain due to arthritis. I have not experienced RLS symptoms in the past and am not aware of any family history of it, although I'm checking into it. My doctor says the RLS is a side-effect of the anti-inflammatory medicine I'm taking. Again, it came on suddenly when I switched medication. I have since changed NSAID's several time but the condition persists. I find the symptoms simply intolerable.
My doctor prescribed Elavil which made it worse. Anyway, just out of desperation one night I took a Percocet (oxycodone) which I use for emergency pain relief for the back problem. The symptoms of RLS just vanished about 60 minutes later. I have since repeated this several days in a row. It wasn't until I researched it that I found that Percocet is known to be helpful for this condition. The effect is so sudden and profound it is simply amazing. I've never had such a complete and sudden improvement from any medication in my life.
My problem is that my doctor (and all the other's I've seen) are extremely uncomfortable prescribing this drug despite the fact that I've never had any negative effects from it. It has been a great challenge to get the meager supply I have.
I'd like to know if others have had such sudden onset. Does this imply it truly is a temporary side effect? Is it likely to just go away? What other recommendations does anyone have for treatment given that I can't get a continuing supply of anything narcotic. Just like the back pain, I am irritated that a cheap medication like oxycodone works so well with no side effects but I can't get access to it. I am told it causes addiction (dependence), although I've not experienced this. Even if I did get addicted, it seems to me that the benefits far outweigh the risks.
Keith L.,
Columbus, OH
Medical Reply
Most of what you have found on your own is quite true. Narcotics generally (but not always and not for everyone) have a very quick and dramatic effect on RLS symptoms, but not the disease itself. As yet there is no treatment that alters the disease, but there are lots of remedies to control symptoms. NSAID's (drugs such as Motrin, Naprosyn, etc.) have no relationship to RLS. Elavil generally makes RLS worse, but can help a minority of RLS sufferers.
Although narcotics are very effective, they are generally the last of the 3 major classes of RLS medications (see our RLS Treatment Page for more information on all the medications). You should try the Parkinson's disease medications first (Mirapex or Permax) and add on of the sedative medications (Ambien or Xanax) next if necessary. Only after trying these two classes of treatments and not doing well, should you proceed to narcotic ones.
Now, if narcotics are needed, then they definitely should not be withheld. Many (most?) doctors feel very uncomfortable prescribing narcotics for almost anything, and especially for RLS which is a condition that most doctors do not understand. The least potent narcotic to do the job should always be tried first. In your case, although the Percocet works well and quickly, other less potent narcotics such as Tylenol #2 or Darvocet may work equally well with less potential for dependence and tolerance.
We would not even be concerned about drug addiction and dependence as treating RLS can be a lifetime proposition, but the other side of the coin of dependence is tolerance. Tolerance means that the previous dose of the drug becomes ineffective and higher and higher doses are needed until no dose is effective. Luckily, there is an easy way to prevent addiction. Take regular drug holidays. We recommend 2 days (one weekend) every two weeks. This will almost always prevent tolerance.
If your regular doctor will not treat you as described above, keep shopping until you find a doctor who understands RLS or will agree to treat you properly.
A Reply from Keith L.
Date: Sunday, September 20, 1998 10:08 PM
Subject: Re: Sudden onset
Can you hazard a guess as to how to explain my sudden onset of RLS? From my studies, it seemed to me that RLS was a slow, progressive onset. Mine was overnight. BAM! I never it had it for 39 years and then one morning...whammo! That was almost two months ago, I've struggled with it every night since.
I'm asking because my physician says it is a rare side-effect of NSAID therapy which will go away by trying other drugs. He is very unlikely to treat this if he believes it is a fluke.
Since my first message, I have spoken with my father. He reports no such affliction in our family that he knows of. He wanted to know where I get such bad genes...he says not from him!
The only thing correlated to the first occurrence was I had started a new NSAID earlier that day (Daypro). I have since switched to Relafen. - Keith
Medical Reply
Generally, RLS is a slowly progressive disease. It can come and go, and may even be quiet for many years. Your sudden onset of RLS is not uncommon. Many patients point to a specific incidence, usually back trauma or some type of surgery, which seems to have brought on the RLS.
I have never heard of RLS being caused by NSAID's, but anything is possible. As we do not know the true cause of RLS, it is very difficult to say definitively that any drug or other stimuli might not be causing a patient's RLS. I doubt that the NSAID's will be the culprit, but let us know if you do better on Relafen so we can add your experiences to our knowledge base.
Another Reply from Keith L.
Date: Wednesday, September 23, 1998 8:56 PM
Subject: Sudden onset RLS
I have discussed the entire situation with my physician, and given him copies of your messages to me. Here's where I'm at:
You should try the Parkinson's disease medications first (Mirapex or Permax)
My doctor seemed uncomfortable with this recommendation, I'm not sure why. He said he'd feel more comfortable with trying just a strong sleeping pill first and see if it works. Unfortunately, he and I both know that my experience with sedatives and sleeping pills is very poor. I've tried just about everything (for pre-procedure anxiety) but nothing works. I haven't tried Ambien, but that's about the only thing I haven't tried. Xanax has no effect on me (even in huge doses, same with Valium) and I tried 4 pills (1mg) of Halcion and it did nothing either. I'd like to try Ambien. Do you think we have a chance at helping me with ONLY something like Ambien?
I'd like to go to narcotics first because I know they work. I tried cutting a Percocet in half (2.5mg) and it helped to, but not enough to completely stop the RLS. The standard 5mb tablet completely eliminated RLS for the balance of the night. My doctor is extremely nervous about narcotics. He says that tolerance is just too big a risk and this makes narcotics very poor choices for long-term treatment of anything.
> You wrote, "Now, if narcotics are needed, then they definitely should not be withheld." So far, no-go on this with my doctor. Did I mention I'm a chronic pain patient? (back pain). I've seen a zillion doctors and haven't met a single one willing to use long-term opiate therapy. Reluctantly, my doctor said he would be MUCH more comfortable with Tylenol #2 than Percocet. Codeine never affected my pain at all, but if it helps RLS, then fine. I am a little worried about taking so much Tylenol if I need it for long time.
My doctor said his rule-of-thumb on this type of thing is "go low...go slow".
Thanks again.
Keith L.
Columbus, OH
Medical Reply
If all the other sedative medication did not help you, Ambien will most likely not be of any benefit. It works a little differently (more selective) than the other sedatives, but it is not stronger or more effective.
If half of a Percocet does not completely relieve your RLS symptoms, then it is unlikely that Tylenol #2 will be very helpful (note that the Percocet has 325 mg of acetaminophen compared to the 300 mg in Tylenol #2). You might get comparable relief with Vicodin ES or Lortab 10 mg, which do not require DEA Triplicate prescriptions. To assure your doctor that you need the higher doses of narcotics, you should try the lower strength preparations first, then work up to the higher strength ones later. Your case is a little more complicated as you are a chronic back patient and these patients can very readily get addicted to narcotics.
Addiction and tolerance are always problems, but can be prevented as noted in our previous letters. Patients who do not take regular drug holidays or who use a little more medication that is needed to relieve about 90% of RLS symptoms are the ones who get into trouble.
The Parkinson's disease medications should still be tried first and can be used concurrently with the narcotics if necessary. Most doctors (excepting sleep specialists and neurologists) have little or no experience with prescribing these drugs and therefore feel very uncomfortable using them. As they are used at about 10-20% the dose used for Parkinson's disease, they are actually very easy and safe to use in RLS. If your family doctor will not prescribe these drugs, then have him refer you to a sleep specialist or neurologist.
Another Reply from Keith L.
Date: Tuesday, September 29, 1998 5:00 PM
Subject: Permax for RLS
Last night I tried permax for the first time. I had one .05mg tablet. The good news: I didn't have any RLS symptoms and I slept through the night. The bad news: I was sick as a dog before I finally got to sleep and very hung-over the next morning.
Side effects:
moderate/severe vertigo
mild nausea
mild headache
moderate 'feel-like-crap' feeling (dysphoria?)
I'm quite sure I can't tolerate these side effects long term.
Question #1: If I keep trying, will these effects go away?
Question #2: If so, how long will I have to suffer with it?
Question #3: Is it likely that my RLS symptoms will immediately reoccur if I stop taking
the Permax?
Permax may be as effective as Percocet, but it sure is less fun!
Keith Lamb,
Columbus, OH
Medical Reply
A small, but significant percentage of patients have side effects with Permax, and nausea and dizziness are some of the most common ones. You may want to cut the Permax in half and try that for 5-7 days. Then increase the dose by only 1/2 tablet instead of the usual whole tablet.
If you still have the unwanted side effects after a week or so of the 1/2 tablet, then you will likely need to change to Mirapex or Requip (same class of drugs but different side effect profile more or less).
Another Reply from Keith L.
Date: Wednesday, September 30, 1998 2:04 PM
Subject: Re: Permax for RLS
Thanks for the advice. Last night I tried 1/2 tablet and the side effects were much more tolerable. I did not have any RLS symptoms, so...so far so good.
I forgot to mention that noticed a rather extreme case of congestion but I thought I was just getting a cold (my wife has the flu). It went away but after last night's 1/2 pill it came back big-time about an hour later. Have you ever heard of this?
Thanks again for all your help.
Keith Lamb.
Columbus, OH
Medical Reply
Yes, nasal stuffiness is one of the side effects of Permax (see our RLS Treatment Page). This may get better with time or else you may have to switch to Mirapex or Requip.
Date: Sunday, September 13, 1998 2:35 AM
Subject: RLS medication question
I have RLS in a rather severe form for many years. With great interest I follow the information from your web site, concerning the medications as well as all the patient letters and the medical replies. In my country (the Netherlands) there is not that much experience with RLS, but I am now treated with Requip and Rivotril with inconsistent results.
It came to my attention that a neural-therapy could 'cure' RLS, through injection of Procaine (novocaine), one drop every 4 centimeters at the backside of the legs.
As I did not find any information about this possibility on your RLS web site, I am very interested in your opinion. Is there any chance of success with this?? Any experience?? Any hope??
Thank you very much for any answer,
very truly yours,
Henny S.-K.
Amsterdam, The Netherlands
Medical Reply
I have never heard of "neural-therapy" before. We have heard of acupuncture helping and various other therapies helping, but local anesthetic injections in the legs is a new one. Most of these new therapies that have been touted to "cure" RLS generally help only a few, at best.
You may consider using a shorter acting sedative than Rivotril (Klonopin), such as Xanax which causes less daytime sleepiness and thus can be used at higher bedtime doses if necessary (remember to take regular drug holidays!). Another aid would be a small dose of a narcotic (codeine) in addition at bedtime.
A Reply from Henny S.-K.
Date: Sunday, September 27, 1998 1:43 PM
Subject: Re: drug holidays.
In your answer you stress the need for regular 'drug holidays'. I have noticed that this need is also mentioned in many 'medical replies' to other questions. This now puzzles me, especially how this can work in actual practice without becoming crazy!
Let me first give you more info about my RLS condition and the medication. After about 30 years of nights with about 2 hours of sleep and around 20 times getting in and out of bed, I now can sleep about 6 hours thanks to the medication, but RLS became much worse during the day and evening. I am a woman of 65 years of age. Most of all the problems described in many of the patient letters, with respect to reading, traveling, theater, etc.etc. do apply to me also.Most of my days are spend in movement so that I don't have to sit down! Because of the many years with almost no sleep my body became accustomed to it, and I am almost never tired during the day.
But: my daily cycle is fully conditioned around the medication, I am really addicted! This is my medication:Requip 0.25 mg at 6 P.M. Requip 2 x 0.25 mg at 11.30 P.M. (together with 2 x 0.5 mg Rivotril every 2 days). Once a week 1 extra Requip 0.25 mg at 1 P.M. My doctor put me on Requip in stead of my request for Permax, (I was on Sinemet but that was not effective anymore) because he said that it is not possible to start on Permax without first reducing Sinemet doses to zero, and that I could not support that, life would become unbearable for two weeks, he said, while Sinemet and Requip can co-exist. I am treated by one of the very few specialists in The Netherlands who are familiar with RLS, he works at the sleep-disorder clinic that is part of an epilepsy center.
By the way: Sinemet , Permax, Requip... all my knowledge about these I got from the information from your support group!!I even gave my doctor your published info about treatment! It is really a great advantage that you disseminate so much valuable information.
Coming back to my main question: what would your advice be for such an addicted person as I am, to implement drug holidays!?
Thank you very much.
Henny S.-K.
Amsterdam, The Netherlands
Medical Reply
If you have been on Rivotril (clonazepam) for a long time (over 6-12 months) and have not needed to increase your dose to keep it effective, then you need not be concerned about addiction or tolerance. It is very unlikely that you will have that problem as long as you keep your medication at a steady level.
There is very little worry about tolerance to Requip, as it occurs very rarely as far as we know (so far, and comparing to Permax and Mirapex, which are similar).
The shorter acting sedatives can usually be dropped for 2 days (Friday and Saturday) as the weekends are much easier for most people to go without much sleep. In severe cases such as your, we will add a narcotic on the drug holiday nights, which generally will take care of the RLS. For patients taking both narcotics and sedatives on a chronic basis, we will have them take a drug holiday one weekend on one drug, then a holiday on the other the next weekend.
Medical Reply
Date: Monday, September 28, 1998 10:05 AM
Subject: Restless Leg Syndrome
Hi, I'm a 71 year old female and have suffered from RLS since I was 18. My father had it and it was very severe at the time he died. I have found over the years that it gets worse as you get older. I have tried several things that have been mentioned in the letters of the support group with out any satisfactory help. I don't like feeling sleepy all day.
I finally found a doctor who prescribed Klonopin in small doses but said I could take as much as I needed. I try to keep it down to 2 pills at night, .5 mg each because I don't like bumping into door jams the next day. If that isn't enough I take another one in the middle of the night but find I don't need to if I am careful with my diet. I noticed that some women take Premarin but I find that Premarin is one of the worse causes of RLS. I put up with the hot flashes and etc and soon became adjusted. I threw away a lot of Premarin before I was convinced.
I keep my diet very simple as all meats except fish makes it worse. Popcorn and other things hard to digest make it worse. I eat my fruit in the morning for breakfast otherwise fruits make it worse. I can eat several vegetables but not all, and a small potato. My evening meals consist of a small potato and a vegetable. I do not allow myself to get too full and try not to snack in the evening. Needless to say I need to take supplement but all this is the best help I have found.
Evelyn T.
Medical Reply
Your daytime sleepiness with Klonopin is common. I suggest considering Xanax or Ambien which should both avoid daytime sleepiness and be more appropriate for drug holidays (2 days off every 2 weeks).
You would likely do well with Mirapex or Permax (see our RLS Treatment Page) which might take care of your RLS complaints without even additional medication. Hormones (Premarin) have been known to affect many female RLS sufferers such as in your case.
Date: Monday, September 28, 1998 9:56 AM
Subject: medicine side effects
I am taking only Permax for my RLS symptoms. I take 1.0 mg at 3 p.m. and another 1.0 mg at bedtime. This medicine works completely for me but the major problem I'm having is that it locks up my jaw at night and I end up with a terrible headache every morning. I would like to know if maybe the drug Mirapex would be better to try for this problem?
David F.
Medical Reply
Mirapex or Requip might be better, but this is more of a trial and error procedure. It is often difficult to predict side effects from similar, but different medications. There is a reasonable chance that the newer drugs will not bother you.
Date: Monday, September 28, 1998 12:21 PM
Subject: Please help!
I have just discovered your web page. I am a 41 year old married mother of two, and I live in Orange County. I have had RLS probably my whole life. I had NO idea that there is an actual disorder for what I assumed was simply "my own insanity".
I have had episodes depression and anxiety since 1985, and have taken many of the medications I have read about in the patients letters-Klonopin, Prozac, Anti-Parkinson's meds, and so on. None of these medications have worked on the RLS. I have however, been prescribed pain pills from time to time, usually for lower back pain. (I have slight arthritis and disk degeneration on L5-S1 just found this out on an MRI three weeks ago) Although pain pills such as Vicodin or Darvocet help the pain, I am allergic to acetaminophen (makes me horribly ill- vomiting, diarrhea, not a pretty picture).
Three weeks ago my doctor prescribed Oxycontin, a 12 hour timed release narcotic (oxycodone). I take 1 in the morning and 1 at bedtime. I have come to "Notice" after reading all the patient letters, that for the past 3 weeks I have not had one night of RLS. I have never had this much peace in my life. I have been able to function, and work!! (Hubby and I have a Software Integration business, we build Internet Mapping Applications for GIS Customers).
My doctor (big surprise) is reluctant to continue prescribing the Oxycontin for RLS. I would appreciate any help from any of you!!
Thank you,
Besty S.
Medical Reply
Your story is not unusual for RLS sufferers. Some will only get relief with narcotics, but most physicians are reluctant to prescribe them. Most RLS specialists will carefully prescribe appropriate doses of pain killers, using frequent drug holidays (2 days off every 2 weeks) to avoid addiction and tolerance. Even so, some patients will become addicted (usually due to not following their doctor's guidelines). There are other types of medications that may help (such as Neurontin) which you have not yet tried.
Date: Monday, September 28, 1998 9:02 AM
I am a 48 year old female, and first experienced RLS (which I call "fidgets") for the first time while pregnant at 21. At the time my doctor prescribed Seconal. It allowed me to sleep, since it knocked me out. But I'm sure was not good for my child.
Over the years, I have tried a few "over the counter" treatments, with little or no success. I have discussed it with my doctors, but stopped mentioning it years ago, as no one seemed to know what I was talking about.
I have gotten the most relief from stretching, particularly yoga. Stretching the muscles in the lower back, hip and hamstrings give me relief. I am still experimenting with postures, and hope that I can "cure" this for myself.
Phyllis from Nashville, TN
Medical Reply
Your story is very typical of many female RLS sufferers. Pregnancy is often the first time they experience their RLS symptoms. Most physicians do not know much about this disorder which makes getting treatment difficult.
Many RLS sufferers can control their RLS problems with stretching exercises, if the disease is not too severe. If this does not control your RLS or if your disease worsens, you should definitely get RLS medication from your doctor to help you.
Date: Tuesday, September 29, 1998 12:53 PM
Subject: Help for Restless Legs Syndrome
My name is Tina and I am a Family Nurse Practitioner who suffers from Restless Legs Syndrome. I also practice herbology and use it often in my practice. I recently developed an herbal lotion for my patients who have peripheral neuropathy, usually from diabetes or poor circulation. It is an olive oil base with 37 herbs that work on the nervous system, circulation and pain.
I tried it on myself and it helps to relieve the sensations that kept me and my husband up all night (he calls it the "twitches"). I apply it to my feet and legs and in about 20 minutes the sensations are gone. It is wonderful to be able to sleep again.
If you would like more information on this, (I call it NeuroEase) you can find it at www.tinasherbs.com .
I hope this helps you, it certainly has helped me. (Works well on my neuropathy patients too)
Medical Reply
We will post your information on our web site. We cannot endorse any product that has not been scientifically tested, but will leave this to the option of our readers to see if they want to try your product. Most of these home-grown RLS remedies help no more than a very small minority of RLS sufferers.
Date: Friday, October 02, 1998 8:32 PM
Subject: Restless Legs Syndrome
For many years I have suffered from the above affliction and here in New Zealand doctors are at a loss with how to help cure this or even alleviate the symptoms. I write this letter in the hope that you may be able to help me, and I would be grateful if you would take the time to read the following, my medical history relating to this syndrome:
59 years old, DOB 20 June 1939
Married for nearly 40 years, with 6 children living, 1 miscarriage, 1 birth
Full term baby daughter died on operating table 24 hours later from heart defect.
Have had cramps since having 4th child off and on over 35 years. All occur at night time. They became so bad the only relief was kicking about (those days). Drove us to single beds, keeping husband awake! Drugs were tried in all sorts by my doctor (GP) even home remedies by the dozens! All to no avail.
Went to a neurologist 10-14 years ago at my doctor's suggestion. Prescribed clonazepam 3 mg increasing to 5 mg. These made me sleep very heavily but the legs still cramped and kept moving or pulling jerky cramps (muscles tightening from below ankle back of heel, then proceeds to back of knee if I let it). It was and is still very painful.
I stopped the clonazepam after 18 months or so as I found my back was in pain with Sciatica caused by the unconscious jerking of legs. My husband became worried as my legs were moving with violent kicks into the air.
Got adapted to and accepted I had an unknown problem for these years until recently when we saw a TV documentary on Americans observing people with the very same complaint.
My husband watched as well, and when we saw one patient being observed by the Clinic, said that she did the same movements and walked up and down the bedroom as I did. This prompted us to find out about the Restless Leg Syndrome.
Sent for information and received Restless Leg Syndrome Foundation Inc. pamphlet incorporating;
What is RLS?
Services RLS offers
Response from doctors and Affiliated Societies
Quotes from patients
Names of Medical Advisory Board members
Another pamphlet on Symptoms etc of RLS and PLMS.
This paper gave drugs used that were affective to some patients.
Took these papers to my GP. He looked them over and admitted I was the only patient he has had with this problem. As my mother had Parkinson’s Disease we decided to try the Sinemet drug.
On 1 April 1998 this year we started the Sinemet 25/100 (25mg Carbidopa and 100mg levodopa) These to be taken 3 x daily 8 hourly. I was to experiment what suited my needs. I found that taking 3 tablets at night was good for a while then by next month 12 May was ready for another prescription.
On 5 June I had a Lipectomy (tummy tuck) operation. My legs increased in cramping and jerking the day after operation. I was supposed to be on completed bed rest but was unable to. Nausea became prominent but by going straight to bed it was better as I had good sound sleeps with taking 3 tablets at night and 2 more 4-6 hours later. I took 3 tablets at 7-8pm and then 2 tablets at 2-3am. Found this to be better - legs didn’t cramp or kick or jerk or were painful. The first dose would wear off and I woke up kicking, would get up and take the 2 tablets and walk around until legs quieted down. Sleep restfully till 6am or 7am.
By 8 July I was taking 3 tablets times 2 in the evenings, as the symptoms became more and more pronounced, the gap between each dose narrowed. Still felt “dopey” and sleepy but compelled to kick and move legs. At this time my husband and I came to the conclusion this increase was somehow related to my Lipectomy?
On 3 August GP prescribed Sinemet CR 200mg. These contained 50mg Carbidopa and 200mg levodopa. Recommended to take 1 tablet 3 x daily. Whereas the 25/100 Sinemet didn’t take that long to work. I found that the 50/200 took a long time (up to 1 and half hours to stop my legs), and the dose at 8 hourly didn’t work. I was up all night walking. I then took 1 and a half tablets at the 6-7pm time with the 1 and a half tablets at 3-4am. I think this worried my GP so he sent me to see the same Neurologist again. I saw him on 1 September and underwent tests as far as I could see for Parkinson’s Disease! I was made to do the exact things I saw my mother had to do many years ago.
After an hour of talking to me and my husband and reading the pamphlets I gave him, he finally admitted that he agreed with the diagnosis of Restless Leg Syndrome. Both my husband and I stressed to him that I did not want something to make me sleep. Sleep was no problem, just to have something to relax my legs so I didn’t have to walk all night. He prescribed Sinemet 250mg = 25mg Carbidopa and 250mg levodopa. On 2 September I received tablets to be taken 1 at 11pm, then 6-7am, 12 noon, and 6-7pm.
My first night I took 1 at 7pm. Was able to read in my easy chair for the first time in ages. Then I took the second tablet at 11pm. Two hours later, I woke up having to get out of bed but when I did, I felt very “drunk” and couldn’t walk straight, my eyes were very heavy and I felt very sleepy. My husband had no sleep either as he had to help me walk around because he was frightened I’d hurt myself. We were up and down the rest of the night, so I was reluctant to take any more. I was still very sleepy (drugged wise).
The next day I saw my GP again. Told him I was disappointed about my consultation with the Neurologist and objected to the $200 fee and also of my night’s events. He then suggested trying something else rather than the Sinemet. He prescribed amitriptilyne? that he said is given to Epileptic patients to control their muscles when they have fits. I took one that night and found I couldn’t sit down as the legs tightened even more and I had to move faster. By 11pm my legs were so sore, and I was so tired and worn out I rang my GP and he said to take another pill and 2 Panadol. I took these despite my doubts that it would do any good. In actual fact, they made me worse. The house wasn’t big enough with the speed I had to move!! (Up to 1am I was running outside).
In desperation we went to the hospital where I saw the Head night nurse who I knew and she was able to give me the Sinemet 25/250. I had to wait until 2.15am before we could go to bed, but my legs calmed down and I had some sleep.
The next day the GP gave me back the Sinemet 25/100mg as he’d spoken to the Neurologist who said RLS patients have a higher tolerance to Sinemet and they can have more tablets than Parkinson’s Disease patients could.
I am now having 3 tablets at 7pm and 3 at 12pm and 1 tablet at 3-4am. I don’t bother taking any during the day as I feel I need my normal faculties for my line of work (Hairdresser).
Having read the above, I would really appreciate it if you could help with these queries:-
Is there some other relief you can suggest?
Have I got the right medication suitable to me?
I have found that my personality is changing and I feel this is because of the drugs. I get grumpy easily, cry at any little thing, want to throw things about - but have the control not to!) These traits are normally completely out of character for me. I have tested for my Iron levels which were normal. I don’t drink caffeine and drink only distilled water.
Is Carbidopa a muscle relaxant ingredient? If so would having just the Carbidopa be enough. Again, sleeping is no problem, just the lack of it!
I anticipate your comments,
Regards,
Mrs. Mavis S.
Medical Reply
Your story about your severe RLS/PLMD is worse than most. We have, however, seen lots of RLS cases mismanaged as badly as yours. I will review your treatment and give you some suggestions for further therapy. Most of what follows is on our RLS Treatment Page .
Amitriptlyne is an antidepressant medication that generally makes RLS worse and thus should not be prescribed for RLS. Even with normal iron levels in the blood, RLS may be associated with low Ferritin levels (a better measure of iron stores). It is also typical for RLS to worsen after trauma or surgery.
Sinemet is a Parkinson's disease medication which contains 2 drugs - LevoDopa and Carbidopa). The LevoDopa (L-Dopa) is the active ingredient (this is a precursor drug that turns into dopamine in the brain). Carbidopa is just an inhibitor of the enzymes which deactivate LevoDopa, thus making the LevoDopa more active (it does nothing else).
The LevoDopa (the second number of 25/100 dose description) should not exceed 300 mg (not more than 3 tablets of the 25/100) for RLS patients. Your neurologist is absolutely wrong when he told your GP that "RLS patients have a higher tolerance to Sinemet and they can have more tablets than Parkinson’s Disease patients could". This is the exact opposite of the fact that RLS patients are very sensitive to dopamine agents (Parkinson's disease drugs) and generally require 10-20% the dose of Parkinson's disease patients.
When more than 300 mg of LevoDopa is taken per day (as in your case), the chances of developing augmentation (worsening of your RLS symptoms the next night requiring higher doses of Sinemet) and rebound (RLS occurring early in the day, when the nighttime dose is wearing off) become very high. It sounds as if you have developed both of these complications, which is very predictable given the exceedingly high dose you have been advised to take.
The newer dopamine like drugs (Mirapex, Requip and Permax) are much better than Sinemet and are now the first choice of Parkinson's disease medication for RLS patients. Augmentation and rebound are very uncommon with these newer drugs. They should be started at the lowest dose and then titrated up. See our RLS Treatment Page on how to dose these medications and how to taper off of Sinemet at the same time (you definitely want to get off of the Sinemet).
Klonopin is also not our favorite drug. It often makes people sleepy the next day. Shorter acting sedatives such as Xanax or Ambien are much better. A drug holiday of 2 days off the drug every 2 weeks is very highly recommended for this class of drug.
If the newer Parkinson's drugs do not completely relieve your RLS symptoms, then you can add small doses of narcotic medications such as Tylenol with codeine or Vicodin.
There are other medications that may be helpful, but about 90% of RLS patients should do well with the above medications. If you do not get better with the above suggestions, please feel free to email us. Make a copy of our RLS Treatment Page so that you doctor can see how to treat you and better understand the medications.
Date: Saturday, October 03, 1998 10:17 AM
Subject: RLS & PLMD
My problem seems to be that the anti-Parkinson medications make my RLS much worse. I take 1.5 mg Klonopin now for RLS which helps that but my sleep study indicates that it does nothing for my PLMD which is quite severe. Are there other medications available which I might investigate?
Does Mirapex have the same awful augmentation effects as Requip and Permax? Both of those were terrible for my RLS.
I also am bipolar taking Depakote and Celexa ( the new SSRI/anti-depressant). I have some interest in trying Neurontin but I am also bi-polar and taking Depakote successfully for that. It scares me to switch to a new mood stabilizer. Maybe taking both? I don't know. I am so frustrated and tired.
Pam,
San Francisco
Medical Reply
Mirapex is very similar to Requip and Permax, and if you have had bad reactions with these two Parkinson's disease medications, I would then not try Mirapex.
Sedatives (such as Klonopin, Xanax, Ambien) generally do not significantly decrease the amount of PLMD, but do decrease the arousals from the leg jerks. The only medications that decrease the amount of PLM's are the Parkinson's disease ones which you cannot take.
You might want to try different sedatives such as Xanax, Ambien or even Ativan and see if you wake up more rested in the morning. Sometimes one sedative will reduce the PLMD related arousals, while another one will not. Also, Klonopin is the longest lasting sedative and can cause daytime sleepiness (which you already have).
Depakote is an anti-seizure medication as is Neurontin. You can add Neurontin to Depakote. The studies on Neurontin showed that it decreases the RLS complaints, but we are not sure of what it does for PLMD. You could, however have your doctor try this and see if it helps you.
Date: Saturday, October 03, 1998 8:07 PM
Subject: RSL
I only recently discovered your site, and am already very grateful for the information that you dispense. I have some questions based on reading all of your posted letters and email from fellow sufferers:
1) You mention in one reply that there are effective exercises to alleviate RLS symptoms. Could you tell me what those are?
2) I have tried to keep some Halcion in stock for years, in order to have one available when I can't stand it anymore. I recently obtained a prescription for Ambien based on your information, and it seems to work as well as Halcion for me. My question is: do you recommend sticking with this class of drugs if it works, or is it worthwhile to try one of the other classes that may obtain more long term relief than just one night of sleep at a time? I am specifically referring to drugs used to treat Parkinson's or anti-seizure medications. It seems that those drugs would address the RLS symptoms, while the sedatives just put you out for the night.
3) One of your writers swore by a combination of calcium/magnesium/zinc/vitamin D. He mentioned something called "Kreb's Cycle Intermediate". I would like to try this avenue, as I truly hate being dependent on drugs. I understand that it is more than likely that it won't work, but it's worth a try to me. Can you point me towards where I might obtain whatever this Kreb's Cycle is?
Thank you for your time. As with your other first time readers, I am so relieved just to know there are resources out there for me to investigate and rely on, for temporary relief if not a cure. Maybe someday even a cure!!
Carol P.,
San Diego
Medical Reply
There are as many different types of exercise as there are RLS patients. Most are simply stretching exercises, where the leg muscles are put at tension.
There is no reason to change from Ambien to another class of RLS medication, as long as you are well controlled with the Ambien. You should however, take regular drug holidays on the Ambien. The Parkinson's disease drugs (and the seizure medications) only control RLS for the night that the medications is taken. They do not give you any longer RLS control then the sedative drugs and thus do not address the RLS symptoms any better than the sedatives.
The Krebs cycle (also known as the Citric Acid cycle) is simply an enzyme cycle in the body which is involved in the metabolism of sugar to provide the body with energy. Dietary supplements (including all the minerals and vitamins known) have no role in helping this cycle except in the extremely rare case where a deficiency might occur. It is an interesting sounding theory couched in pseudo-scientific wording, but makes absolutely no medical or scientific sense. As long as you keep your intake of these minerals and vitamins within accepted ranges, you should however, cause no harm. If you do an internet search (Yahoo, for example), you should find thousands of references to the Krebs cycle.
Date: Sunday, October 04, 1998 1:33 AM
Subject: Message from Leon K.
I have been on Ultram for quite some time, taking 50 mg three times a day. I take a drug holiday every three weeks for 48 hours. With the exception of the drug holidays I have been doing exceptionally well. My last drug holiday was about ten days ago.
On Friday night I woke up after about an hour with quite severe RLS symptoms (in my case, mainly pains in my calves). The pain persisted for most of the night and I experienced some pain during the day on Saturday. Tonight (Saturday) the pain has again been severe and I have been unable to sleep. The only change that I have made is that I shortened my last drug holiday to about 42 hours rather than the normal 48 hours.
About one hour ago I took 0.125gm of Mirapex, which I had tried during a drug holiday some time ago and I appear to be getting some relief.
I would very much appreciate having your thoughts.
Thank you,
Leon K.
Medical Reply
It is hard to know why RLS suddenly gets worse (and then may actually calm down again). Sometimes changes in physical activity, diet, hormonal status (menopause) may be associated with a change, but more often there is nothing that we can relate to the fluctuations in the RLS symptoms.
It sounds as if you were doing fine with the Ultram, and the drug holiday regimen seems adequate. If the Mirapex worked somewhat at low dose without side effects, then that may be the way to go. I would suggest that you slowly increase the Mirapex (by 1/2 or 1 tablet every 5-7 days) until the need for Ultram is significantly decreased (or even eliminated). Hopefully, by going slowly, you will not experience any side effects (such as you had with Permax).
For the short term, to get you over your acute severe worsening, I would suggest a strong narcotic such as Lortab (10 mg) or Percocet instead of Ultram. Once the acute situation improves (and the Mirapex takes over, hopefully), you can discontinue the stronger narcotic and go back to Ultram.
You may want to consider adding a short acting sedative (Ambien or Xanax) to help you sleep for the next week or so.
A Reply from Leon K.
Date: Sunday, October 04, 1998 5:32 PM
Subject: Re: Message from Leon K. October 4th '98
I want to be sure that I correctly follow the approach you are suggesting.
As I understand it, I would take 0.125 mg of Mirapex three times a day and slowly increase the Mirapex dosage as you described. At the same time I would cut back on the Ultram, reducing the daily dose of Ultram from 150mg per day to perhaps 75mg per day for a couple of days and then to 50mg per day for two days and then to 25mg per day for two days and then stop taking Ultram completely. Would you suggest that I come off the Ultram more slowly?
If Mirapex works in place of the Ultram, would I have to take a drug holiday from the Mirapex and if so at what interval?
Alternatively, are you suggesting that I take a combination of Mirapex and Ultram without completely eliminating the Ultram?
I think that I can get through the current situation without a strong narcotic, at least I would like to try.
Thank you for your guidance.
Leon K.
Medical Reply
Mirapex can be taken every 8 hours or so (three times a day) if it is needed for control of RLS symptoms. Most need it only at night, but many severe cases (such as yours) will need it more often. Mirapex 0.125 mg for the morning and afternoon dose is reasonable, although if you are concerned about side effects (nausea, dizziness, etc.), adding just a 1/2 tablet for those two extra doses is reasonable.
I would then try and see if you could use only 1/2 and Ultram tablet instead of a whole one. If the 1/2 tablet does not work well enough, you can always add the other 1/2 tablet one to a few hour later. I have some patients who even try to break the tablets into quarters (not very accurate, but who cares?) in an attempt to taper even more slowly. As long as you are comfortable (with respect to your RLS symptoms and no significant side effects from the medications), then you are doing the right thing.
The goal of adding Mirapex would be to get off of the Ultram completely and just use the it from time to time for an exacerbation (such as you are having now).
The nice thing about Mirapex is that tolerance to this drug is very uncommon, so that drug holidays are rarely needed (that is one of the reasons why we recommend this class of medications so much).
Date: Sunday, October 11, 1998 1:42 AM
Subject: RLS letter
I am a university professor who has had mild RLS for many years. Three years ago I developed a severe case but it wasn't until a year had passed when I met my girlfriend, a brilliant physician, who jumped into the RLS literature and got me into treatment. In the past two years I have tried quite of few of the treatment alternatives used for RLS. Ambien, Ultram, Xanax and Depakote have been the most helpful..
But it wasn't until I tried Requip that I found a treatment that doesn't seem to have side effects. Before Requip I tried Sinemet but I had morning rebound and daytime augmentation. I started at 0.25 mg of Requip and increased it to 1 mg before experiencing complete relief. I also found that I can get to sleep without help from Ambien or Xanax. I think that your treatment page and your advice to letter writers is excellent and want to thank you for your help.
While I am very happy with Requip, I do have a question for you. I have been suffering from GERD for the past nine months. My girlfriend/physician has just discovered in a literature search that dopamine reduces lower esophageal system pressure so we are concerned that Requip may be contributing to GERD. I got GERD long before I started Requip so I only view it as possible contributing factor. If this is true, then one option is to decrease my dosage of Requip and use Ultram, Ambien or Xanax as a supplement. Do you have any thoughts on this?
Richard B.
Honolulu, Hawaii
Medical Reply
We have been using Requip for only a relatively short time (compared to the older RLS drugs), but no complaints about worsening GERD (gastro-esophageal reflux disease) have yet been noted. Dopamine agents may decrease the lower esophageal pressure but I am not sure how that actually translates into clinical effects on GERD.
Reglan, an agent for controlling GERD has anti-dopamine effects and therefore does interfere with the metabolism of Requip causing the Requip blood levels to be decreased. Propulsid (a better drug than Reglan for GERD) has less of an anti-dopamine effect than Reglan.
There are two approaches for solving your problems with GERD and possible interaction with Requip. My first thought is to just treat the GERD more aggressively, and leave the Requip dose at 1 mg per day. The GERD usually responds to weight loss, decreased food intake in the evening, elevation of the head while sleeping and other conservative measures. The new proton pump inhibitors (Prilosec, Prevacid) will generally stop it cold, and if not, Propulsid can be added.
If the above route does not work (or is not to your liking), then you could slowly decrease the dose of Requip, and add either Ultram or a sedative (I would alternate these) to help. The "cleanest" way, however, is the first one above.
A Reply from Richard B.
Date: Monday, October 12, 1998 1:17 PM
Subject: Re: RLS letter
Thank you so much for your reply. It was so helpful. My girlfriend, Dr. B. W., is also very appreciative of your work. About a week ago I restarted an aggressive treatment for GERD using Prevacid. I have Reglan but have been reluctant to use if because of interactions with Requip. We were not familiar with Propulsid and will be checking it out should the Prevacid not be sufficient.
By the way, I started using magnesium about the time I started Requip. I normally take the magnesium around dinner time and the Requip near bedtime. At the present level (500mg) I find that the magnesium decreases RLS symptoms but not enough to control RLS. One night when I omitted magnesium and only took my 1mg of Requip, I later needed to take half an Ambien to sleep.
Aloha and mahalo.
Dick B
Medical Reply
There would be only a minor concern about Reglan interacting with Requip, and then all you would need to do is increase the dose of Requip by a pill or so. Propulsid is a better agent than Reglan anyway, and has less dopamine interaction as I discussed in my previous note to you. It sounds like you should do well, and are clearly in good medical hands.
Magnesium has helped some, but this unfortunately is only a small minority of RLS sufferers.
Date: Monday, October 12, 1998 6:38 PM
Subject: Alternative Treatments for RLS
Wow, am I glad I found your site! I haven't been able to get a doctor to take me seriously since I was first afflicted with RLS, at age 17 (I'm now 42). I had been run over by a car, and was recuperating in traction with a fractured femur and pelvis. The doctor told me they were "muscle spasms", caused by inactivity, but offered no relief.
I have suffered with RLS ever since, and coincidentally, have also been diagnosed with Fibromyalgia. However, this is the first time I've been able to put a name to this frustrating condition!
Somewhere along the way, a co-worker suggested taking extra Folic Acid supplements. Taken at night, 400 - 800 mcg of Folic Acid has given me relief for almost twenty years. A doctor recently recommended taking Quinine, but it causes nausea for me, so I couldn't take it long enough to perform a fair test.
In recent years, though, I have identified two common substances that will bring on the sensation, hours after taking them - Ibuprofen and Acetaminophen. These two drugs will cause the RLS sensation to occur even while I'm standing or walking - the ultimate nightmare, since in this instance, no amount of movement will bring relief.
No one else in my family has this condition. Is it possible I developed RLS as a result of the auto accident? Does excess weight increase the potential for RLS?
Thanks for providing such a wealth of information!
Sherry
Medical Reply
Folic acid has been helpful in a minority of RLS patients, but most of these have documented folate deficiency.
About half of the RLS sufferers have a family history of RLS. We are not sure how or from where the other half of RLS patients get their problem. It is very common for RLS to start (or get significantly worse) after trauma to the body. This can be in the form of surgery (especially to the spine or other orthopedic surgery), or and accident that results in broken bones (such as in your case). We do not think that this causes RLS, but somehow triggers the RLS condition that is already present, but as in you case, in a latent stage.
Excess weight does not contribute to RLS, but weight changes (up or down) of a significant and sudden nature have been known to trigger RLS occasionally (trauma to the body of a different sort??). Quinine does not seem to help RLS except in rare cases. There is considerable overlap between Fibromyalgia and RLS. We are not sure why, but some think that the sleep deprivation of RLS may cause some of the Fibromyalgia like problems.
Your exacerbation of RLS by ibuprofen (Motrin, Advil, etc.) and Acetaminophen (Tylenol) is very unusual and I have no explanation for this association.
Date: Monday, October 12, 1998 11:58 PM
Subject: Relief from RLS
What a thrill to find your web-site about RLS. My first symptoms of RLS began with my first pregnancy. The "twitching" was so bad I took Tylenol with codeine for the last four months of my pregnancy. The symptoms completely disappeared after the birth of my son but later reappeared when I began taking Effexor for chronic depression. I found that codeine helped ease the symptoms.
The RLS became truly debilitating when I became pregnant again (seven years after my first). I would go days, literally, without sleep. My doctor was at a loss. Codeine no longer helped. I finally ended up in the hospital where they tried numerous drugs but nothing helped. The lack of sleep was crippling and the helplessness was terrible.
After the birth of my second son the RLS symptoms lessened but occasionally I would stay up all night and then have to watch my baby during the day. Some months ago my husband heard that a gentleman took a herbal remedy called Butcher's Broom to relieve what he called "racing legs". I find that the Butcher's Broom does help my RLS considerably. I hope this may help someone else who has mild symptoms.
Lisa B.,
Peace River, Alta.
Medical Reply
As you may have already read on our web site, RLS during pregnancy is exceedingly common. It is often the first brush with RLS for many female patients.
Thankfully, your RLS is mild now and controlled with an herbal remedy. I am not familiar with this remedy, so would you mind sending more details (from the products label) such as manufacturer, ingredients, etc. so that we can pass them on to our readers.
Rest assured, that if your RLS does get worse, there are lots of treatments available.
A Reply from Lisa B.
Thank you for asking for more info on Butcher's Broom. Here is the information as it appears on the label.
Made by Nature's Way, Butcher's broom root (Ruscus aculeatus). Each capsule contains 565 mg.
Recommendations: Take two or three capsules three times daily with water at mealtime or prepared as a tea.
Contains: Pure Butcher's Broom root powder and gelatin (capsule). A European member of the Lily family whose stiff, pointed leaflike twigs were used to make brooms, Butcher's Broom is also called Box Holly. Related to Asparagus, its young tender shoots can be eaten. Butcher's Broom root was popular with Dioscorides, an ancient Greek herbalist. Nature's Way selects prime wild Butcher's Broom from Europe.
The following is the information I received from my husband (a pharmacist) from Prescription for Nutritional Healing by Balch and Balch.
Herb: Butcher's Broom Parts Used: seeds, tops. Chemical and Nutrient Content: Alkaloids, hydroxytyramine, ruscogenins. Actions and Uses: Relieves inflammation. Useful for carpal tunnel syndrome, circulatory disorders, edema, Meniere's disease, obesity, Raynaud's phenomenon, thrombophlebitis, varicose veins, and vertigo. Also good for the bladder and kidneys. Comments: More effective if taken with Vitamin C.
I hope this helps you a bit. I should mention that I take Butcher's Broom only at night (3 capsules). Nature's Way is a Canadian company, their address is:
Nature's Way of Canada Ltd.
Box 448 Markham, Ontario
Canada L3P 1X0
Sincerely,
Lisa B.
Date: Wednesday, October 14, 1998 10:20 AM
Subject: Jumping Legs
Do I have a story to tell you.
It all started in January of 96 two weeks after I had a spinal fusion on my lower back. My legs started jumping and pulling up toward my chest. I couldn't stop it! I went to the doctor that did the surgery and told him. He said that he did.not know and he did not try to find out what was the cause of it.
So I went to the neurology doctors and they did some tests and said it was my nerves and started me on some medications that did not work. I went to doctor after doctor to try to find out what was wrong with me. It was the same thing after another. Medication after medication that did not work.
I got desperate. It was the worst thing in the world to me. It was every day and every night! It just would not stop. I started going to the Emergency Room in hopes that someone would help me. Same old thing with them too.
I took things into my own hands and started injecting pain killers that stopped it. But I knew I could not do that for long so I went to the hospital and told them what I was doing. They sent me home and told me to go to the neurology doctor ...HERE WE GO AGAIN.
So I went to the neurologists adn they did not do any thing. They sent me home that way. Well after I battled with it for two years. I then took an overdose and I ended up at Vanderbilt University Hospital where they started me on Neurontin 400 mg three times a day and Risperdal 4 mg at bed time. It works!! I still have problems But my neurology doctor wrote out a order for one pain shot a week, only if needed.
I still don't know if it is RLS but it's a lot like it. I hope this neaver happens to anyone out there.
Nancy
Medical Reply
It sounds very much as if you have RLS. Sudden onset of RLS is very common after trauma or surgery, especially surgery to the spine as in your case. Neurontin is a reasonable drug and helps many RLS patients.
Risperdal (risperidone) has anti-dopamine properties, and therefore may cause RLS to worsen. This is only a theoretical consideration, as there is no known relationship between RLS and Risperdal as yet described.
There are many other drugs that help, especially in the Parkinson's class of medications such as Mirapex, Requip and Permax. Ultram is a good choice as a pain medication that helps RLS.
Please talk this over with your doctors and see if they cannot help you. If you are not getting better, then you should see a sleep specialist who has an interest in RLS.
Date: Thursday, October 15, 1998 8:05 PM
Subject: RLS
I was diagnosed with RLS last year. I was on Sinemet for about 6 months. My symptoms and their frequency increased so I have stopped taking it. Since then I am much improved. My symptoms not as bad and only at night.
I was prescribed Klonopin 1 mg tablets, but a third of a tablet is all I take each night. This helps greatly; however, I am concerned about taking a benzodiazepine. I know this dosage is very low. Should I be concerned and do you have any suggestions that are not addictive?
Thank you for you time.
Norma
Medical Reply
You are right to be concerned about taking Klonopin on a chronic basis. Many RLS patients can take Klonopin at low or high doses without any problems with tolerance, addiction or daytime sleepiness, but just as many patients may suffer from the above problems. We suggest using a short acting sedative such as Xanax or Ambien and taking regular drug holidays of one weekend off the drug every two weeks which almost never fails to prevent tolerance and addiction. Klonopin (even at your low dose) due to its long half life needs at least a 5-7 day drug holiday which is much more difficult.
Sinemet is well known for causing problems such as you have described. The other Parkinson's drugs, such as Mirapex, Requip, and Permax work much better without generally causing those problems.
A Reply from Norma
Date: Saturday, October 17, 1998 1:51 PM
Subject: Re: RLS
Many thanks for your response. Since I am so reluctant to take any benzodiazepine, do you think just taking the Permax might be helpful? When I took the Sinemet, it was the only thing I took. It eliminated the symptoms but, of course, as I told you in my last e-mail, I experienced rebound and augmentation.
In you experience,has anyone been helped by just the Parkinson's medications Again, thank you so much for your help.
Norma
Medical Reply
Permax, Mirapex and Requip are dopamine agonists. This means that they are similar chemically to dopamine and can act in the body like dopamine. Sinemet is actually a pre-drug that then turns into dopamine. The problem with augmentation and rebound seems to be common only with Sinemet. The other medications are very uncommonly a cause of augmentation or rebound.
Many RLS sufferers can be controlled on just the Parkinson's disease medications alone. If you do well with Permax, Mirapex or Requip, there is no need to add a sedative/benzodiazepine medication. By the way, Ambien is not a benzodiazepine medication.
Another Reply from Norma
Date: Sunday, October 18, 1998 8:17 PM
Subject: Re: RLS
In reading some of the information I have received from The S.C. RLS support group, I noticed that serotonin antidepressants can also exacerbate RLS. I do take Paxil. So the complete information on me is Sinemet caused augmentation and rebound.
I have been taking .3mg of Klonopin and don't want to take it , and I'm considering Permax. In your opinion, should I stop the Paxil and if so what kind of an antidepressant do you recommend. Should I see if that step eliminates the RLS or begin the Permax also.
I also plan to give a copy of all this info to my doctor. Thank you again--I can't tell you how helpful you have been.
Norma
Medical Reply
Paxil may cause RLS to be better, worse or unchanged. The response to this class of medication is quite variable and as you can see, runs the gamut from good to bad. The only way to tell is to see if you get worse with starting the medication and then better with stopping it. It might be worth a week or two trial to see if you get better. If the Paxil is really helping a significant depression then I would just go right to starting Permax.
Date: Tuesday, October 20, 1998 2:40 PM
Subject: RLS question
My husband was recently diagnosed with RLS. He saw a doctor at the Central Texas Sleep Disorder clinic in Austin. His doctor prescribed Mirapex. I know this is a new drug and I have read about it on your website, but I was wondering a few more things:
Is this drug the best drug for him to start off on, or should he ask to be treated with a Benzodiazepine first? Besides the stated side effects, is there any evidence of sterility or heart problems? Cancer? Other?
The drug seems to be working already at a dose of 0.125. Is there a need to gradually increase the dosage? Finally, is it safe to only periodically take the drug - only when RLS is aggravated? We both hate the thought of him being on medication for the rest of his life - especially when so little is known about this drug.
Thank you for any answers you can provide.
Lindsay C. M.
Medical Reply
It can be a difficult decision for mild RLS whether to use benzodiazepines or Mirapex (Parkinson's disease medications). If the RLS occurs just occasionally, then the benzodiazepines are a good choice as we do not have to worry about tolerance or addiction. If the RLS occurs on a regular or daily basis, then the Mirapex is a better choice.
The Parkinson's disease medications have been used for many years and no other unusual side effects are of concern. Parkinson's disease patients can get a movement disorder from long term use, but this does not seem to a problem with RLS patients.
We always stress that Mirapex (and in fact all the RLS medications) should be used at the lowest dose at which they are effective. The goal of therapy is to eliminate about 90% of the RLS symptoms. Once you reach 100% control, you do not really know if you have overshot and are using more medication than is necessary. Although this is more important for the sedatives and narcotics, I think that this is a good idea for the Parkinson's disease medications as well.
We even have patients who are controlled on half of a Mirapex 0.125 mg. tablet per night so again, there is no need to increase the dose if control of RLS symptoms is adequate on even very low doses.
The medication can be used on a sporadic basis for RLS, but it does take about 30-60 minutes to start working, so it works better when used on a preventative basis about one hour before the time of day that the symptoms generally start acting up (for most people that is one hour before bedtime).
Although Mirapex is relatively new, it is somewhat similar to Permax which has been around for quite a while. It has been studied for use in Parkinson's disease at doses of about 10 times that used in RLS (and 30 times the dose that your husband is taking) without significant problems (other than discussed already). I would have very little concern about your husband taking this drug at such a low dose for the rest of his life. He can however, work with his doctor and by trial and error with either sedatives or Mirapex, see what works best for him. In the final analysis, each RLS patient is different, and should be treated individually to find the best drug regimen.
Date: Thursday, October 22, 1998 5:03 PM
Subject: RLS and food coloring
Artificial food coloring aggravates my RLS. Culprits are: Yellow #4, Red #40 and blue #2 (?). These are coal-tar dyes, used in clothing, food and medications. A recent study in Australia of school children showed Yellow #4 ("Tartrazine") clearly was a culprit in hyperactive children. (This double blind study involved a very large number of kids).
Recently my skeptical wife ate a very big dose of Red #40 in raspberry jam and that night her whole body tingled -- never before did she have any such symptoms. Moreover, I recently got some added relief when my pharmacist switched my medication over to alternatives without coloring.
Because of side effects, I switched from Valium to Klonopin to Tegretol. Will try Sinemet next. My grandmother and my daughter both have RLS, so it appears to be hereditary.
Medical Reply
Tegretol is not one of the more commonly used RLS drugs (as it only helps a minority of RLS patients). I would suggest that you consider Mirapex, Requip or Permax before Sinemet as they are more effective with less side effects. Please see our RLS Treatment Page for more information.
Date: Thursday, October 22, 1998 4:31 PM
Subject: RLS
My symptoms include an uncontrollable urge to move my left leg, usually upon lying in bed at night. The only relief I have ever found is to get out of bed for a while and massage my leg from the knee to the ankle with Flexall 454. However, the smell is obnoxious.
Medical Reply
Very likely it is the massaging and not the smelly Flexall 454 that is helping. I would discontinue the Flexall 454 but continue the message therapy and see if that makes a difference. If that does not control your RLS symptoms to your satisfaction, then consider discussing a trial of RLS medication with your physician.
Date: Saturday, October 24, 1998 4:31 AM
Subject: RLS
I have been corresponding with you recently and I not sure if I have to repeat my history, but briefly, I stopped taking Sinemet due to augmentation, and stopped taking Klonopin at night (.3mg). Monday night (5 days ago) was the lasts time I took the Klonopin. Tues, Wed, and Thus. nights I took .05mg of Permax.
Although it effectively reduces the symptoms of RLS to a minimum, I have been unable to sleep and even have a "wired" feeling. Thinking these feelings were from the Permax, last night (Friday), I took 50 mg of Ultram. It totally eliminated the RLS, but I still have not been able to sleep.
Now 2 questions: Do you think it's getting off the Klonopin that is causing the "wired" sleeplessness? And which is the safest and most benign medicine to take the Permax, Ultram, or something else?
Thank you,
Norma
Medical Reply
Very likely you are having withdrawal problems from the Klonopin. This should get better within a week or so.
Permax has the least chance of long term problems. Ultram is good for acute worsening of RLS, but once you get the right dose of Permax, it should work well and does not need drug holidays like the pain killers (Ultram) or the sedatives (Klonopin).
Date: Saturday, October 24, 1998 10:46 AM
Subject: PLMD
First I would like to thank you for this really helpful website. I am 30 years old, and I have had periods of sleeping poorly for at least 12 years. During these periods, I feel more fatigued than usual. Not being a horrible problem, it nevertheless is troubling to living a normal life.
Six years ago I was diagnosed with PLMD in Spain, my home country. I was on Sinemet and later on Rivotril (clonazepam). I took the prescriptions for some time, but as the results were neither spectacular nor my symptoms so serious or continuous, I discontinued the medications. But those periods of poor sleeping have been persisting.
I was surfing the net and came across this web site. I have recognized my case in some of the RLS/PLMD features described here, and being so promising the knowledge that both professionals and affected people have about RLS/PLMD, I have decided to share with you my experiences and ask for your advice.
I don’t think I have any RLS symptoms. During daytime I feel all right. It is not a special problem for me to be seating long times. It is only at night that I have these sudden limb movements. At the beginning of the night they may awake me, although I don’t usually have problems to fall asleep. Later I don’t notice them. It is my partner that tells me the many jerks of my limbs while sleeping. The doctors also told me the same after monitoring my sleeping.
In the morning I feel very sleepy and tired, not so willing to do things or be concentrated. Sleeping badly one nigh is like triggering short periods of poor sleeping. The next day it is very probable that I will have another night of light sleep. And so on. Until one day that I have a good rest and everything changes for some time. This doesn’t follow any pattern. There are times that I sleep without problems for more than one month, and others that my sleep is very poor for one week or more, then it goes to normal for a short time, and then back again to the same sensation of tiredness and non-deep sleep.
The very few conclusions that this erratic occurrence has allowed me to draw are:
1) As I have said, a night of bad sleep can trigger a period of poor sleeping and the
same for a night of good sleep in relation to a good sleeping period.
2) During days of bad sleep, I only lose my sleepiness at nighttime.
3) Inactivity during the day may cause me a bad sleep.
4) Definitely, if I do a very strong physical exercise during the day, like playing soccer
or similar, I won’t sleep well that night. In these occasions I also feel very
uncomfortable with any position of my legs when in bed, and it takes me a long time to
fall asleep. Besides, it is such a light sleep that sometimes I am not so sure if I
achieved it.
5) I have also identified when I sleep the best. It used to happen when I had final tests
at College. Finals could take me one month or more of a sustained studying effort, and I
was always surprised about my more than average nights of good sleep. Of course, this is
not true for the night right before the test, when I didn’t sleep at all, but this is
maybe another problem.
It seems to me that all these features are related somehow to my physical and mental activity, something that is mentioned repeatedly when dealing with RLS/PLMD.
I would like to know if these symptoms could mean that I really have PLMD, and if so, the kind of medication or treatment that would be most suited for me. I would also appreciate any other suggestions or comments you may have.
Thank you very much.
Paco
Medical Reply
It sounds as if you have PLMD. The leg jerking at night is most definitely PLMD, but that usually only bothers the patient's bed partner. In some PLMD patients, the leg jerks cause frequent arousals and prevent the patient from getting deep, restorative sleep. Your description suggests that this is a distinct possibility. The only way to prove this would be to have a sleep study in a sleep lab. Only after this test, should you be prescribed sedative medication (Ambien, Xanax, we do not like Rivotril (clonazepam) as it is too long acting) to eliminate the arousals from the PLMD.
Alternatively, the Parkinson's disease medications (Mirapex, Permax, Requip, we do not like Sinemet due to other problems) can actually eliminate the leg jerking at night.
Date: Sunday, October 25, 1998 7:36 AM
Subject: RLS and Brain activity
As a severe RLS patient, who has contacted you earlier, I like to submit to you a thought that haunts me for some time, and for which I would appreciate your comment.
There is some general concurrence that in many cases an RLS patient can benefit from specific brain activities, like game playing, computer usage, solving puzzles, listening to certain types of music, etc.etc. The basis of my thoughts are as follows:
In my case, I have monitored this for more than a year now, and have determined a number of 'brain-activities' which, in about 95 percent of the time give relief, whether preventing or stopping the RLS symptoms for the duration of that activity. (I even bought a laptop computer to enable me to play certain card games when traveling!) A very specific game, that I play together with my husband, is almost 100% effective!! It kills the RLS immediately and prevents the symptoms. During the several years we have been doing this, we have already had 800 sessions!!
Now, by applying some logical thinking and deduction, it seems obvious to me that because of the brain activity needed during this process, the brain seems not to be able to 'send' the impulses that create the RLS sensations.
The 'haunting thought' now is the following: the analysis of brain activities is mastered by experts, for instance much is done in so called sleep-scans, and the brain scientists are very advanced in their knowledge how the brain functions and where functions are located. It should moreover be possible to determine exactly what is going on in my brain, when I am playing this game, by connecting it electronically to the right equipment. Once the result has been analyzed, one could determine precisely which impulses create the suppression of the RLS stimulation,and/or which brain cells are affected, it then should be possible to determine 'some' artificial equivalent to the game playing impulses, which, when applied outside the game playing activity, have the same results: i.e. preventing the RLS stimulation.
Yes, I know, I am just an amateur, this thought could be complete nonsense, but as I still think there is some logic in it, it strikes me that I have never, in whatever document about RLS, encountered anything of this kind.
Looking forward to your comments,
sincerely yours,
Henny S.-K.
Amsterdam, The Netherlands
Medical Reply
Your thoughts despite coming from an "amateur" are not too far off the mark. We already have clues from where in the brain the RLS symptoms may be generated. A study in the Annals of Neurology Vol 41, No. 5, May 1997 used FMRI (Functional Magnetic Resonance Imaging) to look at which parts of the brain were active during attacks of RLS/PLMD. They found activity in the cerebellum and thalamus which was different from patients who tried to reproduce the PLMD movements voluntarily.
FMRI and PET scans have already been able to show the brain cells that are involved in different types of thinking processes and motor activities. Thus it would be easy to figure out which part of your brain is activated when you playing your games which relieve your RLS. As yet, our technology is not good enough to know what to do with this information, but I am sure that in the not too distant future, this will result in better understanding and treatment of RLS.
The brain activity that blocks RLS may also be similar to the blocking activity that occurs when we shake our hand after hitting our thumb with a hammer. The shaking activity somehow blocks the nerve impulses from the pain and thus brings relief.
Date: Thursday, November 05, 1998 5:59 PM
Subject: Mirapex and sleep
I have been on Mirapex successfully since it came out in July 97. It completely alleviates my RLS and PLMD. However, I have had trouble with early awakenings, frequent awakenings, etc. and have tried narcotics, sleeping pills, etc. with no success. Is this common?
Can you suggest a protocol with Mirapex which is most likely to give a good night's sleep? It is now 2:45 a.m. and I have yet to get some sleep so that I can go to work in the morning. I just found your site.
I have had this problem since the 70's, been through Sinemet, Neurontin, Permax, Parlodel, Ambien, Codeine, etc. Probably had this as a child.
Help? Thank you,
Barbara, age 59,
Duncan, OK
Medical Reply
Mirapex generally is not responsible for early awakenings, especially when it relieves the RLS complaints. That of course, does not mean that it is not causing insomnia in your case. Try going off the Mirapex for a few days and see if you still have the awakenings (of course you then have to be sure that your RLS/PLMD is not the cause of these awakenings while off the Mirapex).
You might want to change to Requip which is very similar, but may have a different side effect profile.
Date: Thursday, November 05, 1998 9:14 PM
Subject: Re: Permax for RLS
I met today with my doctor about my RLS treatment. I told him I was unhappy with Permax because it wasn't relieving all my symptoms and it was still giving me congestion and vertigo/nausea. I can use it, but I sure can't see using it over the long-haul.
I told him that codeine worked wonders and was cheap and didn't make me sick.
He switched me to Mirapex. Seems the Mirapex salesman was just there and dropped off free samples. I can't argue with free. I start the therapy tonight.
The saga continues.
Keith L.,
Columbus, OH
Medical Reply
Mirapex is a good drug and may work better than Permax in many RLS sufferers. Give it a chance and let us know how you do.
Date: Friday, November 06, 1998 10:45 PM
Subject: Tolerance to Mirapex?
For several years I controlled my RLS with Sinemet and Klonopin. If there was any development of tolerance to the Sinemet it was very gradual. I started with half of a 25/100 and after 5 years or so I was still only taking one tablet normally and and extra half on bad nights.
I was willing to tolerate less than complete control of symptoms in order to minimize any augmentation problems. However reading the info on how Sinemet can actually injure the dopamine producing region of the brain caused me to switch away from it.
First to Permax which worked but made me feel lousy then to Mirapex. The first night I took .25 mg I was symptom free and felt great but in only a week or so I had to increase to .5 mg and in a month or two had to increase it to .75 mg and after a while even the .75 dose was giving only marginal control. At that point I decided to try to combine Sinemet and Mirapex since it was my intuitive feeling that my body used the Sinemet more efficiently. I cut back the Mirapex to .5 and added a half of a 25/100 Sinemet, along with .125 mg Xanax (no Klonopin) and have used this regimen for about a month with decent results.
Do you feel that I can continue to combine the two or should delete the Sinemet and just keep increasing the Mirapex until I (hopefully) reach a stable dose. I should mention that Mirapex sometimes makes me feel below par but not anything like Permax. I get no adverse reactions from Sinemet at all. What would be a reasonable upper limit on Mirapex or do we even know that?
Regards,
John V
Medical Reply
The upper limit of Mirapex (6 mg per day) is generally defined for Parkinson's disease patients who need many times more than the RLS patients. Most RLS sufferers need only between 0.125 mg and 0.5 mg to resolve RLS problems, but I have used up to 2 mg on the odd patient.
There is nothing wrong with combining low dose Sinemet and Mirapex together, especially if they are working well and enabling you to decrease the side effects from the other drugs by keeping them at lower doses.
Try to keep the Mirapex at a dose that you can tolerate. Generally you should try to relieve only 90% of the RLS symptoms, not necessarily 100+%. If you find that you are developing tolerance to Mirapex, take a drug holiday of 2 days off every 2 weeks and that should likely take care of it.
You may also want to consider Requip in the future if Mirapex does not work out.
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