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Date: Tuesday, June 08, 1999 11:43 PM
Subject: Many thanks for your quick response (see previous letter, Page 18, April 27, 1999)
When writing you on April 27, 1999, I was in a desperate state. Your response has helped me tremendously. I discussed your suggestion with my neurologist who gave me some samples of Mirapex to try. I first tried using 0.125 mg; it only lasted me about three hours of relief. I then add up to 0.25 mg. Together with 2 mg of Klonopin and two capsules of Neurontin (100 mg), I have been sleeping like a log.
Even during day time, I am able to take a short rest or nap without RLS which I have not had for more than a year. I was over-joyed that I am telling everybody that I know. Mirapex for me is, at least for the time being, working much better than Sinemet.
Since last two nights I have cut down my Klonopin to 1.75 mg. Hopefully, in another month I may wean off to 1 mg, and gradually to none and take Ambien (can I get Ambien over the counter, or with prescription only?) as sedative instead. I still have no courage to take drug holidays. If I can go on like what I am doing now, I am already more than thankful.
I will surely keep you posted of my progress. Once again thank you for your quick response which has helped me a great, great deal. In case you think my weaning of Klonopin should be faster, I would certainly appreciate to hear from you.
San Jose, CA
Ambien is a prescription medication only. There is no real hurry to wean off of Klonopin, in fact slower is generally better. If the Ambien does not work as a complete substitute for Klonopin, Xanax can also be tried and alternated with Ambien.
Date: Wednesday, June 09, 1999 8:38 PM
Subject: Severe RLS and dose of Requip and Neurontin (see previous letter, Page 19, May 26, 1999
Just when I think I have things straightened out, everything goes to hell. I am getting so very disappointed. The rash is back with a vengeance even though I'm on Requip, not Mirapex. I've been off Mirapex for about four days now. I combined the Requip with Neurontin (one 100mg three times a day) and it worked beautifully........for four nights. Now the RLS is giving me jolts like I've never experienced. And it's pretty much been going on since 3:45 this afternoon.
Today I have taken 1.75 mg Requip, and three 100 mg Neurontin. I see on your Treatment Page much higher doses are taken by some. I did just take an additional .25 Requip along with another 100 mg Neurontin. Can I really increase the dosage safely to still higher doses? If so, how much?
I remember this from the last time I was on Neurontin about four years ago. It worked beautifully at first, then just stopped working. Usually hot baths will stop anything immediately. Tonight my legs were going even in the bathtub. It does give one a frantic feeling.
Requip can go higher, but do so slowly. I have rarely had to go higher than about 3 mg per day. Most RLS sufferers need between 0.5 mg and 1.5 mg per day. Neurontin can be increased slowly (by 100 mg every few days) to a total of about 900 mg for a nighttime dose.
Again, I am not sure that it is the RLS medication that is causing your rash.
Date: Thursday, June 10, 1999 5:40 AM
Subject: Mirapex and Tickling Back (see previous letter, Page 19, May 22, 1999)
I have written before. I'm the person with the tickling back sensations. My doctor put me on the lowest dose of Mirapex and I have been on it for a month. The restless legs symptoms disappeared immediately, but the back still tickled all day long, and my spine felt overly sensitive by the end of the day.
I tried increasing the Mirapex (doubling it) and it started to work on the back symptoms. I was so happy!!!! I called the doctor to make sure it was okay to do that and he said "yes." For three days I was normal, then yesterday my back was tickling all day. What happened?
It may be coincidental that the back tickling sensation got better than worse with your change in dosage of Mirapex. You may want to reduce then increase your dose of Mirapex and see whether there really is a relationship between the drug and the strange back tickling problem.
Date: Thursday, June 10, 1999 4:44 PM
Subject: Changing from Permax to Mirapex?
I have this affliction real bad and am sleeping 3 - 4 hours a night and my RLS will not let me sleep during the day. I have been on Sinemet and am off of that and have been on Permax for a number of years. The doctor that I go to does not know much about restless legs and I showed him an article about Mirapex so he gave me a prescription for 0.125 mg of Mirapex.
I will go off of Permax gradually and onto the Mirapex but I don't know how much Mirapex to take and when - do you have any suggestions? I would appreciate any suggestions that you could give me.
You can exchange one Mirapex .125 mg tablet for each Permax .05 mg tablet that you are currently taking. You might want to a little lower than that, and increase by half of a .125 mg tablet each 5-7 days as needed.
Date: Thursday, June 10, 1999 6:16 PM
Subject: Sleeping problems with Mirapex and Requip?
Thought you might like to know, if not already, about the many blurbs on the radio about Mirapex and Requip being stopped for the Parkinson's people as a result of them falling asleep while driving just after taking it, causing major accidents. Does that make sense? If so, that's a major setback for those of us using them for RLS...or is it just the Parkinson's people?
I have heard about it, but this should not be as big a problem with the "RLS crowd" for two reasons. 1) the doses used by Parkinson's disease patients are about 5-10 times higher than RLS patients. 2) Most RLS sufferers use the medication before bed when sleepiness would be welcome.
I have yet to hear a complaint of sleepiness with daytime use of the doses used for our RLS patients.
Date: Friday, June 11, 1999 4:38 PM
Subject: Problems with Sinemet for RLS
Good to see this page! A lot of interesting information.
I seemed to develop periodic leg movements about eight months ago. Had a sleep study which resulted in the diagnosis and was quite relieved because I thought the symptoms were a further manifestation of MS, a condition I've had for nearly 30 years, although I am relatively well and it's not obvious that I have it. It seems that there is not a connection between the two conditions in my case. I'd be interested to hear from others who have the two conditions.
Five months ago started to use Sinemet but am now experiencing augmentation and some other side effects which are sometimes difficult. Have arranged to see my specialist to discuss alternatives.
Nice to read the letters on this page.
Best wishes to all,
Consider Mirapex or Requip to replace Sinemet. If those are not available, then Permax (which is an older medication) generally works quite well.
Date: Friday, June 11, 1999 6:16 PM
Subject: RLS and Fibromyalgia, any connection?
Hi, I just found your site and it makes me feel better knowing that I am not alone.
RLS has bothered me or should I say WORRIED me to death for years. I have just recently been diagnosed with Fibromyalgia. After going through every test that you can think of I was referred to an arthritis Dr. to see if he agreed that I probably had Fibromyalgia. He confirmed that I did. Before my visit to the arthritis Dr. I had several pages to fill out about my medical condition and one of the questions was about my sleep. My answer to this was: that I could not sleep because of my legs jerking so bad.
When I got in to see the Dr. he looked over my questions and answers and told me that the restless legs was one of the first signs of Fibromyalgia. Have you ever heard from anyone else that has Fibromyalgia along with RLS. These last few months has been very trying for me, because I have had to leave my job, can't do very much around my house without hurting, then can't sleep at night. Any help that you can give is very much appreciated. I have researched so much on the interne, I do not know what I would do without it.
There is a link between RLS and Fibromyalgia, but why they are linked is unknown (as is the cause of both of these diseases). There is a possibility that untreated RLS/PLMD which results in poor sleep may be a cause of Fibromyalgia and thus treating the RLS may help the Fibromyalgia.
If your RLS (and possible PLMD) is causing you problems, then consider treatment (with Mirapex).
Date: Sunday, June 13, 1999 12:46 PM
Subject: RLS and Soma/antidepressant drugs
I am so glad I found your web site. I have had RLS for about a year and everyone thought I was crazy and I began to think so to. I finally found a doctor that would listen to me and took the time to understand what I have been going through.
I am now on Soma and in 2 weeks will change to the anti depressant drug therapy but after reading your articles I will ask for something else first.
Thank you so much for putting out your web site,
Soma, and all other muscle relaxants have no benefit for treating RLS. Unfortunately, many physicians who do not know that much about RLS will often prescribe similar medications for RLS. You are right to avoid antidepressant drugs, (unless you really need them for depression), as there is as good a chance or worsening RLS as helping it.
See if your doctor will put you on Mirapex, which should work very well.
Date: Monday, June 14, 1999 8:24 PM
Subject: Magnet therapy for RLS and antidepressants.(see previous letter above, June, 11,1999)
After laying in bed for over an hour trying to go to sleep with no success because of RLS, I am at the computer. I looked at your web site and found the reply to my question from June 11th about the connection of RLS and Fibromyalgia.
Thanks for the info. I read the article from Chris that followed mine. Your reply to Chris has me wondering if the antidepressants that the doctor has given me is making my RLS worse. All that my doctor has done for my Fibromyalgia is to double my dosage of anti-depressants. You had mentioned to Chris that antidepressants could make RLS worse. Now I am wondering if that is part of my problem.
I have researched and found that magnetic therapy is good for Fibromyalgia. Do you think it would also help RLS? I am considering getting a mattress pad to sleep on that is suppose to help. Please let me know if you have ever heard of this, and what do you know about it, being used for RLS. I am so grateful to you for having this site.
THANKS SO MUCH,
As you have read on our web site, antidepressants can be a significant cause of worsening of RLS. The only way that you can be sure is to stop the antidepressant medication and see if the RLS improves, then gets worse again with starting the drug again.
There is no evidence that magnets help RLS, but a few RLS sufferers have reported minor degree of improvement with this therapy.
Date: Monday, June 14, 1999 8:54 PM
Subject: Quinine for RLS
I've been reading about Quinine and some RLS sufferers have had good results with it. I understand it was used to treat Malaria and is in Club Soda. What exactly is Quinine and what might the benefits be for the sufferers or RLS? Thank you for your response and this great website.
By the way, a funny thing happened to me. I was showing a chiropractor my issue of Nightwalkers and telling him about all the research into RLS and he basically told me that by reading the newsletter and being in a support group that I was making my problem psychosomatic. Guess he's never had a bout of restless legs !!
Quinine was found in the bark of a tree in South America and was used by natives for medicinal purposes. It is present in certain seltzer waters (sometimes called quinine water) and is very useful to treat Malaria and to prevent leg muscle spasms/cramps.
Quinine is rarely helpful for RLS, although sporadic patients have reported some success with the drug. It used to be available over the counter, but now is available only by prescription.
Comments such as those made by your chiropractor just illustrate the high level of lack of understanding about RLS in the medical and para-medical community.
Date: Thursday, June 17, 1999 8:03 AM
Subject: Trazadone, Ambien and RLS
For several years I have been taking trazadone to help with my RLS. In 1994 I added Klonopin because the Trazadone wasn't as effective as it had been. This continued for a couple years, and again I was having problems with insomnia due to the aching legs and restlessness.
I went through a trial of Permax for 6 weeks, and found it effective, except for the side effects which included pain in my legs and insomnia. At that time I discontinued everything for about 6 weeks. It was a bad time. I didn't try another Parkinson drug because of my bad experience with Permax. I prefer not to use those drugs, and am currently taking 2 50 mg Trazadone.
I use Ambien when I go on the drug holiday. I'm finding with the Trazadone I wake after 3-4 hours of sleep as my legs are aching, which eventually begins to make them restless. It's a battle to get back to sleep. I probably get about 4- 5 hours of sleep a night. I've used valerian and that sometimes helps me to sleep.
Is there something that you would recommend in place of the Trazadone that might help? I hesitate to use Ambien on a regular basis, but with 1 Trazadone and 1 Ambien I sleep very well . I sometimes wonder if it isn't the pain in my legs that initiates the restlessness; thereby influencing my sleep.
Many thanks for your help and input,
Although you did not like Permax due to its side effects and thus do not want to try another Parkinson's disease medications, I still think that your best choice is Mirapex or Requip. They tend to work better than Permax with less side effects. The trick is to start at a very low dose (even half of a .125 Mirapex tablet) and increase the dose by only 1/2 of the smallest tablet on a weekly basis.
If you do not want to try Mirapex or Requip, then a narcotic (Tylenol with codeine, Vicodin, etc.) or Ultram taken before bed can be very helpful. Remember to take regular drug holidays (at least 2 days off the drug every 2 weeks) to avoid tolerance and dependence on the drug.
Ambien is quite safe as long as regular drug holidays are taken.
A Reply from Sue H.
Date: Friday, June 18, 1999 6:18 AM
Subject: Drug holidays from narcotics and Ambien?
Thanks you for your very speedy reply to my request about medication. If I use a narcotic is there a substitute for it that I can use during the 2 day drug holiday? Can you suggest a drug holiday substitute for Ambien?
I may eventually try the Mirapex , but we are soon to leave on a 2 month trip to Alaska. I'm uneasy starting that while I'm on the road. By the way does Mirapex also require a drug holiday, and if so what is substituted?
Many, many , thanks and much appreciation,
You can use Ultram for a drug holiday from the narcotics. Xanax may be used for drug holidays from Ambien. It is better to take real drug holidays, but many have done well with the above regimens.
Mirapex does not need a drug holiday.
Another Reply from Sue H.
Date: Friday, June 18, 1999 9:22 AM
Subject: Medications and alcohol
Another quick query! I drink a martini or glass of wine before dinner, and sometimes have a glass of wine with dinner. Should I be doing this if I'm taking narcotics or Mirapex for the restless legs?
Thanks for your timely replies and information.
PS how can I send a donation to the SO. CA RLS support group in your name for the help you've given me?
In general, depressants such as narcotics and sedatives should not be taken with alcohol. Many people do take them together and think that there is no problem, but you should definitely not try to do activities such as driving. The combination of depressant drugs and alcohol can impair your coordination and cause problems such as accidental tripping and falling.
The combination of Mirapex and alcohol should not be a problem for most. There is some new evidence about falling asleep at the wheel with the higher doses of Mirapex used for Parkinson's disease patients (usually about 10 times higher than RLS patients), and for these patients, the combination could present some difficulty.
Our group's leader, Elizabeth "Bill" Tunison is the one to contact regarding donations. These are used to further education of the public and for research into the causes and cures for RLS.
Date: Thursday, June 17, 1999 10:05 AM
Subject: ADHD and RLS in children
Thank you so much for your site! It was through your information that I finally sought out a physician last fall. Now I am currently responding very well to Sinemet and Neurontin on alternate weeks, and apparently had RLS for at least 4 years before finally getting professional help at the age of 48.
I would now like to turn my attention to my son who has been diagnosed as having ADHD, and has been on Ritalin for several years, again very successfully. Having just returned from vacation with him, I've observed some of the same bizarre sleep habits I once had (twitching, thrashing about, etc) and now believe that I know why it's so hard to get him out of bed in the morning. He simply isn't sleeping well at all. My physician believes that we may be treating the wrong symptoms, and should focus on his sleep problems first, then see if the ADHD symptoms are still there.
Clearly my first step is to coordinate this with his pediatrician, however I wanted to do my homework in the meantime. So...
(1) Is there a genetic link between ADHD and RLS?
(2) Should both be treated at once, or should we try to determine the dominant problem?
(3) Would the usual medications for each (Ritalin and Sinemet, etc.) be compatible?
Any other suggestions or ideas would be welcomed and much appreciated.
There is a link between ADHD and RLS. It is thought (although, not proven) that RLS in childhood will cause sleep deprivation which seems logical to result in decreased attention and concentration in the daytime. Many adults can trace their RLS/PLMD back to their childhood and have had ADHD behavior when they were children. We have heard of several children of RLS sufferers being treated for RLS and subsequently finding that the child's ADHD has improved or resolved. Therefore, if it is determined that your child has RLS, treatment for this condition alone should be instituted, then once successful the need for ADHD medication should be assessed.
Depending on the age of your child, many of the same drugs (in smaller doses) are used successfully in children. Ritalin may actually worsen some RLS symptoms, but is otherwise compatible with most RLS medications.
Although Sinemet works well initially for RLS, we do not recommend it for RLS any longer. It can cause augmentation and rebound (see our RLS treatment Page) when used above 2 of the 25/100 tablets per day. We therefore recommend Mirapex instead.
Date: Thursday, June 17, 1999 10:36 AM
Subject: Changing Permax to Mirapex (see previous letter this page, June 10)
I so much appreciate your response to my e-mail to you on June 10 regarding Mirapex. I am taking your suggestion as to exchanging the Permax with the Mirapex and I am sleeping so much better and my legs have not bothered me during the day. I hope this continues.
I am taking 2 Mirapex at 5 p.m., one at 8 p.m. and am still on a Permax at 11 p.m. but will exchange that for Mirapex in a day or two.
Thank you SO MUCH for your help,
I am happy to hear that you are doing well with the Mirapex instead of Permax. Let me know how your do in the future.
Date: Thursday, June 17, 1999 11:08 AM
Subject: Ambien and insomnia (see previous letter , Page 18, April 3, 1999)
I wrote previously (April 3) about problems with my doctor, etc. Fortunately, it appears the iron supplement regimen you recommended has worked; the RLS has subsided so that a dose of Kava Kava is sufficient. I'm going to get my blood level retested to make sure it was the iron as opposed to the exercise, change of weather, or just coincidence. The main times the RLS actually hits me bad is when I'm standing in line or when I stop exercising so I just run my cool-downs a little bit longer. The car is another no-no so I walk everywhere possible and have begged from my doctor (basically pledged my soul) a few tablets of codeine for a week long car trip in July. She's absolutely refusing to consider using codeine as an ongoing treatment if the RLS flares up again. The Rivotril was useless and the Xanax she next put me (and she's worried about addiction with the codeine) on drove me insane-the family was starting to hang garlic around their necks. Anyway, I've given up on benzodiazepines as I have never had a positive reaction to one.
However, I do have questions about Ambien. When I was visiting my mother in the states for six weeks and the Rivotril was making life hell, I was able to try Ambien. There were no side effects as far as I could tell which has never happened before with any type of drug except topical ones. (My mom gets 'drunk' on it though.) For the first time since high school (22 years) I was sleeping from 12 to 8 every night. I took it for 4 weeks (with a drug holiday) and had no rebound insomnia (at least worse than my normal)
Unfortunately, I cannot get Ambien up here and my doctor is refusing to cooperate with a doctor relative in the states in order to get it for me as she doesn't want to prescribe a drug she has no experience with. While understanding that, I am frustrated by her lack of effort in finding out more about it. She did look it up in some medical reference and though it had little information, Ambien's chemical name led her to believe it was a relative of Imovane (which makes me fall on my face with dizziness). Is this true? Also, how long has it been in use and to what extent (how many people use it) and with what success rate?
I am attempting to get into a sleep clinic to see if they can determine the cause of my general insomnia as well as hints on dealing with the RLS when it flares up again. I do not know how long I'll have to wait. I do have an appointment in ten months with a RLS neurologist. Besides general sleep hygiene routines, any other suggestions? I sleep now, without the RLS problem, when I can for about 7-8 hours a day; it just happens to be from 3 AM or later. I experience, even with this amount, constant fatigue that seems have no other physical cause. Even with the Ambien, I felt exhausted all the time. Basically, I looking for self-help information on insomnia. Any support groups around for general insomnia? I've come across some web sites with information, but nothing like your page for RLS. My library has about 20 books I'm starting to work through, but would like more up-to-date info. The RLS has taught me to self-educate and if I am to avoid RLS flare-ups later on, I have to decrease the chance of sleep deprivation and stress.
Thanks so much for your help. It has been totally your information that has gotten me this far. If the RLS turns up again before I can get in with the specialist, I'm changing doctors. Probably will anyway. I'm already asking around for recommendations. Hopefully, you won't be hearing from me again.
CLR in Calgary.
Ambien (Zolpidem) is not related to Imovane. It is very safe and non-addicting especially if taken intermittently. As your RLS is not the problem for your insomnia, you are right to look for other answers to solve this problem. Sleep hygiene is extremely important as you have already noted.
Codeine and other narcotics if used carefully can be very effective and safe for short term quick control of RLS symptoms. Ultram also works similar to the narcotics without being one and is likely less addictive. You may want to consider Mirapex or Permax instead if your problem gets worse in the future.
A good source of general sleep information is the Sleep Medicine Home Page at http://www.users.cloud9.net/~thorpy/ .
Date: Thursday, June 17, 1999 12:19 PM
Subject: Problems with Xanax for RLS.
My doctor has tried Xanax, and we also tried Naprosyn which did help my PLMD. But I weaned myself off Xanax and am finding myself having to take more to relax my legs. I have an appointment Monday with him, and we are really not sure which to try next. He is learning about RLS right along with me.
I don't want something heavy duty that will make me feel drugged out. Where can we go to next? I still don't need it every night, so I want something that I can take as needed. I really hated the feeling I had on Xanax of not being able to remember things, and not being able to concentrate. Any suggestions you have are greatly appreciated..
A good choice would be Mirapex. Start with a low dose (even half of a .125 mg tablet) and increase slowly if necessary (see our RLS Treatment Page for further info on how to do this). You should not feel drugged with this medication if used at low doses.
Ambien may work better than Xanax. Most people wake up refreshed after taking Ambien the preious night.
Date: Thursday, June 17, 1999 1:15 PM
Subject: Quick Question about intermittent RLS
My husband was diagnosed with RLS 2 years ago. It came on very suddenly after he completed an inpatient rehab program for alcohol addiction. About 2-3 months after he had stopped drinking, RLS "kicked" in.
He does not have it every night. He experiences it on average once a month lasting about a week or more. Our family doctor prescribes 7-10 days of Ambien for him to at least get some sleep.
My husband seems to think when he keeps a constant running programming going the symptoms are less. And as silly as it sounds, drinking less whole milk appears to make a positive difference too.
My question is since he does not suffer from RLS every day/night, is there something he could take to keep the RLS from attacking?
A Concerned Wife.
Mirapex would be a good choice. If he does not mind the 30-60 minutes that it takes to kick in, he can wait to see if the RLS is active, then take the Mirapex. This way he does not necessarily have to take it every day, although that would not really cause any problems.
Date: Thursday, June 17, 1999 5:32 PM
Subject: RLS and Fibromyalgia update (see June 11 and 14, above).
After writing to you on June 11th and 14th just a few days ago I wanted to give an update. I made an appointment with my doctor yesterday to try to get some help with my RLS. He prescribed Sinemet (Carbidopa/Levodopa) for my RLS, and also prescribed Vioxx, which is a fairly new drug for arthritis which he said should help the fibromyalgia.
Just wanted to let you know that I am trying something new and will let you know in a few more days if this drug is helping me, so you can pass the message on to someone else in need.
Thanks again for you time and help.
Although Sinemet works well initially for RLS, we do not recommend it for RLS any longer. It can cause augmentation and rebound (see our RLS Treatment Page for more info) when used above 2 of the 25/100 tablets per day. We therefore recommend Mirapex or Requip instead.
Vioxx is a very new anti-inflammatory drug that has the benefit of a low incidence of stomach side effects. It may help Fibromyalgia, but does not help RLS.
Date: Friday, June 18, 1999 7:43 PM
Subject: Lower back pain blocker shots for RLS?
My doctor is recommending that I have a series of pain blocker shots done into the lower back area, in order to stop the pain in my lower legs. Is this a common procedure?
At this point I have been diagnosed with RLS, but none of the Parkinson drugs have worked. I have also been on clonazepam in the past, but it no longer works. I would welcome any comments you may have.
If RLS is the correct diagnosis, then pain blocking shots of any type would not be of any benefit (including caudal blocks, or intramuscular injections). This may sound promising to physicians not familiar with RLS, but really should not be included as an RLS therapy.
Have you tried the Parkinson's disease drugs Mirapex or Requip yet? They are often much better than the older ones.
Date: Sunday, June 20, 1999 8:41 PM
Subject: PLMD and high blood pressure.
On (page 10 of 35) of page16 of Patient letters, you are making a statement that "The headaches and drowsiness are not part of RLS/PLMD......"
I have PLMD which is in control now. But whenever it happens, I have a headache in the morning and drowsiness. When my PLMD was more active, this was the case so frequently. Hundreds of arousals during your sleep, due to PLMD means you are not getting relaxed sleep. I believe this disturbed sleep is the cause for headache and drowsiness. I am wondering why do you say that the headache and drowsiness are not part of PLMD. I have only PLMD and no RLS. If night after night your sleep is disturbed by PLMD arousals, can't it cause headache and drowsiness? I would like to hear from other PLMD suffers. What is their experience?
Recently (in last several months), I am getting High Blood Pressure readings (160/100 area). Again I observed that whenever I ate salty food, it increases my BP. I know I am salt sensitive and so I do use less salt at home. One salty meal is O.K., but after second salty meal my BP will start rising. During normal BP period, I have observed that it is near 140/90 area during the daytime. But in the evening, after dinner when I am relaxed, my BP is 120/80. I have a BP measuring device at home.
My doctor says that higher BP can cause headache too. Since I still have occasional events of PLMD, when I wake up with headache, how do I know if this headache is due to PLMD or High BP? I think that disturbed sleep due to PLMD may be causing High BP, Is there any connection between PLMD and High BP?
I am wondering if I should suggest to my doctor (who is thinking about prescribing me a BP medication) to prescribe me BP medication from your list of blood pressure drugs, which can also help in PLMD.
In description for "Permax" and "Parlodel", you are mentioning low blood pressure as one of their side effects. Do you think such a medication or one from the BP medication list will be a better choice for me? I am not on any medication for PLMD. My family physician knows about my PLMD, but he has little knowledge about it. My sleep specialist (who diagnosed my PLMD in a sleep study) is not in this town now. That is why I highly value your opinion on this subject. If a patient of yours was facing this situation, what would you tell him? You and your web page are so valuable for us, poor souls suffering from RLS/PLMD.
Thank you very much and God bless you.
The letter that you are referring to (written on January 14, 1999) on page 16, states that the headaches and drowsiness are occurring with the attack of RLS, not as a result of RLS/PLMD. You are correct in that these can be daytime symptoms as a result of the disturbed sleep from RLS/PLMD.
The decreased sleep may also be a cause of high blood pressure. Headache is a symptom of high blood pressure only when it is very high, generally when the diastolic (bottom number) is above 130. There are usually very few if any symptoms of high blood pressure in most patients, which is why it is called the "silent killer".
The blood pressure medications listed on our RLS Treatment Page work better for RLS than for PLMD.
Although a few patients who take Parlodel or Permax may have episodes of low blood pressure (usually manifested by episodes of dizziness/lightheaded attacks), this side effect would not be helpful for patients wishing to control their high blood pressure problems.
The best drugs for PLMD are Mirapex or Requip. That would be my recommendation for treating your problem. If you sleep better with this treatment and your blood pressure goes back to normal, then you should not need any more medication.
Date: Monday, June 21, 1999 1:45 AM
Subject: Foot/toe problem, is it RLS?
I first heard of RLS on a commercial during a talk radio show for a local sleep clinic, which made me log on to the internet and have found you guys. I am not really sure if my condition is the same or as severe, but it seems to happen a few times a year, and for about three to four nights each time.
I get this sensation that I want to bend my foot towards my head when I'm trying to go to sleep. Sometimes its both legs but usually just the left leg. I usually have to wake up my wife to stretch my legs, by pulling down on my foot, in other words to make me point my toes, and I find even greater relief when she grabs my big toe while stretching me, and pulls down on it. It seems to really stretch the tiresome area well. I also find that if I rub the area in between my knee and shin toward the outside of my leg, it seems to help. Seems like it is real tight to the touch in that area and I also can feel the "tightness" when my legs are acting up. Its not tingling just uncomfortable. I can also pound on it a little bit and that helps.
What really is bothersome is that it is so uncomfortable I become restless, and almost claustrophobic, and have to get up and walk around a little bit. Usually coming to my PC for a little bit does the trick and am able to go to sleep after about an hour, or going to the couch where its cool seems to help also.
I have gone to a doctor before and he seemed to think it was shin splints. I do work on my feet ALL day, and on a hard tile floor (kitchen), and there is a lot of pivoting movement. Ice does seem to help as he recommended, but my body has never agreed to extreme cold, I get different kinds of aches then. A perfect example would be if the AC in my car is hitting my leg, then I will get an arthritic pain there that lasts just for a short while. Any advice would be greatly appreciated, by the way I am a male and am 29 years old.
My brother is diagnosed with ADHD as well as his son. I don't seem to have ADHD, though as a kid, I did have a lot of pain in my knees growing up, "growing pains", my doctor called them, and I was also called a wiggle worm a lot. I never stood still, but I DO NOT have any twitching or jerking when I sleep, though I do toss and turn a lot. When this leg disorder is not occurring, I sleep very well. I hope this letter makes sense, its really hard to describe the sensation I get, but its definitely not a "creepy crawly" sensation.
Thank you for any reply,
Your condition is not RLS. What you have is a case of recurrent muscle spasms affecting the flexor muscles of the arch of your foot and toes. When the spasm causes your toes to flex, relief is often obtained by putting pressure opposite to this spasm, that is in the extensor direction (or as you stated, towards your head).
This problem can happen at any time, but usually occurs during periods of rest (and quite often in bed) after previous hard exertion. The condition is often confused with RLS, but has nothing to do with it. As you stated there is no creepy crawly sensations associated with your problem.
The treatment for these muscle spasms is to take quinine sulfate, before they occur. Once the spasm starts, nothing more than you are already doing will be helpful. Quinine (which is not helpful for RLS) used to be over the counter, but must now be obtained with a doctor's prescription.
Date: Monday, June 21, 1999 5:49 PM
Subject: RLS and peripheral neuropathy or Parkinson's disease.
I have written you before, and appreciate your help. I am still taking Sinemet & Klonopin at night. It helps me to sleep and at 70 years of age, I need the rest. As I mentioned before, my legs were not restless, but hurt extremely bad all the time. They still hurt but not as bad, and getting the sleep helps.
One thing I did want to ask. Is there any connection between RLS &Peripheral Neuropathy ? I have a cousin who has this, and as I check into my family more, I am finding lots of people with different "nerve" type of problems. My mother had Parkinson's, and my grandmother had a "trembling" problem. I just wondered if there could be a connection.
Again, many thanks for your help,
Their is no connection between RLS and any other type of nerve condition (neuropathy), trembling/tremor problems or with Parkinson's disease.
Date: Tuesday, June 22, 1999 4:00 AM
Subject: RLS and antidepressant medication.
Recently I have been affected with RLS. On some internet link (which I can't seem to find now), it mentioned that RLS could be associated with medications taken for depression. I take Serzone. I'm willing to give it up and to take an alternative St. John's Wort if it will decrease my symptoms.
Are you aware that certain prescription drugs can cause or exacerbate symptoms of RLS?
RLS may be worsened or sometimes even improved with anti-depression medications. See our RLS Treatment Page for more information about this topic and all the other medications that can exacerbate RLS.
The best antidepressants for RLS (as they increase dopamine) may be Wellbutrin, Remeron and Serzone.
Date: Tuesday, June 22, 1999 8:39 AM
Subject: acupuncture for restless legs
I suffer terribly nightly. Has anyone had acupuncture for this? Does anybody knows if it works? I would appreciate any response on help please.
Acupuncture helps only a very small minority of RLS sufferers. If your RLS is so severe, you should discuss using Mirapex with your doctor.
Date: Tuesday, June 22, 1999 9:09 AM
Subject: Circulation and RLS
Being a long-time RLS sufferer, I am always looking for little techniques that work to lessen the symptoms. I stumbled upon this Sunday because I was in a dress for church (no restricting waistline or pant legs) (yes, I am female!) and then for the rest of the day, I dressed casually in a loose jumper. We were planning on watching a good video in the late afternoon and I figured I would have my usual bout of RLS during the film. I didn't happen and this is highly unusual for me. I think it had something to do with my circulation. Of course, when bedtime came, there were my symptoms.
So what do you think? Any correlation? I'm still having good results with Ultram (100 mg) at bedtime. Hope it keeps up. Also, the Ultram gives a feeling of well-being the next morning. I understand that they can have that affect.
Thanks for your great website. You do great work!
It is hard to say whether or not your decrease in RLS was coincidental or actually caused by your change of routine. The only way to determine this, would be to see if the phenomenon is reproducible. If it is reproducible, I do not have any explanation, but we do know that different things (and often strange things) do seem to help some RLS sufferers.
Ultram can give you a sense of well being, similar to the narcotic medications. Do remember to take drug holidays of at least 2 days off every 2 weeks.
Date: Tuesday, June 22, 1999 4:19 PM
Subject: Benzodiazepine Discontinuation
What's the safest way to switch from six years of continual oxazepam treatment of RLS to an herbal or mineral alternative, such as Kava or magnesium?
Oxazepam (Serax) is a relatively short acting benzodiazepine sedative. As such, it should be tapered off very slowly to avoid problems with withdrawal symptoms which can even include seizures. Before doing this, you must discuss this with your physician and only do it under his/her supervision.
If the oxaxepam is not being replaced by another benzodiazepine medication (over the counter minerals or Kava Kava do not count), then the dose should be decreased by one half each week (then 1/4 the second week, 1/8 if possible the third week, and so on) until you are off the drug.
Date: Wednesday, June 23, 1999 12:37 AM
Subject: Treatment other than chemicals for RLS
First, GOD BLESS the ANGELS who lovingly maintain these pages. This is the future of Health Management. If you have read all these pages you know a lot more than virtually any doctor you might encounter.
OK, I am a 59 year old male who has had mild and intermittent symptoms of RLS for about twenty years. I add my experiences here because I believe that is what makes these forums valuable. I used to take the Legatrin brand of quinine sulfate (162.5 mg per tablet) with good results. One or two tablets at bedtime or whenever symptoms flared would calm it down so I could sleep. No side effects that I know of. If I wake up with the leg crawl, I usually do some yoga stretching while waiting for the quinine to kick in. Now my pharmacist told me the quinine was taken off the market because of some unspecified problems. The Legatrin product is still sold only it has no quinine - just analgesics.
The pharmacist recommended a calcium magnesium and zinc tablet which I now take in the evening plus sometimes an ibuprofen if I feel the symptoms starting up. I think the quinine worked better but I hadn't tried to get a prescription yet when I ran across drugstore.com on the net. They have a product, Hyland's Leg Cramps with Quinine Tablets, "a traditional homeopathic formula for the relief of symptoms of cramps and pains in lower back and legs" containing "Cinchona Officinalis (3X, HPUS (quinine)" and a bunch of other things. Hard to tell how much quinine this is, but I think I'll order some and try it out. Has anybody else tried this?
This forum orientation seems very chemical. Quick fix pills to stop the symptoms. How about the MIND BODY connection? Why are we experiencing RLS now? Has anybody found a connection between their restless legs and their restless minds? Does stress or anxiety affect it? Meditation? Biofeedback? If illness serves a purpose in our lives, what is the purpose of RLS? Is there some way we can achieve this without losing sleep? What part of me needs RLS? This could be a valuable discussion.
And I don't mean to slight the wonderful authors of the Medical Replies here (although I wish they were signed, so we wouldn't get that hierarchical anonymous doctor patient feeling.) Medicine has obviously done wonders, but I can't help wondering if there isn't more to it.
EBS in Portland, Oregon
Thanks for your letter. You have asked some interesting questions. Unfortunately, with RLS there are many more questions than answers. The reason why we seem to resort to drug therapy (chemicals) so much is that most people who write already have severe RLS and will not get relief with homeopathic remedies.
We do list all the non-prescription and even non-chemical treatments so that RLS sufferers can try them out and not have to use medication if possible. However, only a small minority of RLS patients get benefit from these remedies compared to a very large majority of patients who will be made better by prescription medication.
Date: Wednesday, June 23, 1999 4:41 AM
Subject: Neurontin and Klonopin not working for RLS.
I don't know how often you respond to letters but I find myself in real distress. I have been taking Klonopin for PLMD for 2 years. I have found it has stopped working. My doctor then put me on 600 mg Neurontin along with the Klonopin which worked for 1 month. When that stopped working he put me on 3 mg of Klonopin along with the Neurontin which is not working. In fact, I woke after little sleep with acute anxiety.
How can I get off this medication? What should I do? Any suggestions would be appreciated.
You are likely tolerant to Klonopin at this point. You should taper off of your high dose of Klonopin slowly, decrease by .5 mg each week until you are off the drug. Ambien can be used as a replacement to help you sleep, but do take drug holidays so that you do not become dependant on this drug.
Neurontin can be stopped suddenly without worrying about withdrawal problems.
The best drugs for RLS are the Parkinson's disease drugs, Mirapex, Requip and Permax. If you need a little extra treatment while on these drugs, you can add a narcotic like Vicodin. See our RLS Treatment Page for more information on how to use these drugs for RLS.
A Reply from June
Date: Thursday, June 24, 1999 3:52 AM
Subject: When can I start new medications and does melatonin mix with RLS medication?
It's me again. The woman that is on Neurontin and Klonopin and not sleeping. I thank you very much for your prompt response. I really could not believe how quickly you responded to my question. I just have one more question for you, or maybe to phrase it better a two-fold question.
How long do I have to wait before I start the new medications? I imagine I can start the anti-Parkinson drugs immediately but what about the Ambien? Do I have to wait until I am completely off the Klonopin? I have tried an opiate before. I was given Darvocet to take with the Klonopin and I had a bad reaction so I am afraid of them. Thank you so much for answering my questions. I am quite miserable at the moment. I am hoping the anti-Parkinson drugs work.
If I took melatonin with Mirapex or Permax while weaning off Klonopin, would it do any harm? I have used it in the past and it does help some with sleep but I don't know if it reacts with certain medications.
Thank you so much again. You don't know how much this means to me.
You are right that you can start the Parkinson's disease medications immediately. If sleep is really a problem as you taper off Klonopin, then you could slowly add Ambien, starting with half of a 5 mg tablet and increasing by increments of 2.5 mg weekly as you decrease the Klonopin.
It is hard to say whether you will have the same reaction to other narcotics as you did to Darvocet, but you could try Ultram, which is not a narcotic, but helps many RLS sufferers in the same way as narcotics (sometimes even better).
There is no problem taking melatonin with any of the RLS medications. If it helps, it can reduce your need for bedtime sedatives.
Date: Wednesday, June 23, 1999 10:21 AM
I will try to make a long story short. My first symptom was approx. 6 years ago during the later part of my last pregnancy. Once the baby was delivered I didn't have another symptom (that I noticed) until almost 5 years ago.
The night time tingling and numbing came back.
I first went to my primary care physician who suggested that I might have RLS. He tried me on Quinine to no avail. He then sent me to a local neurologist. Two spinal taps, x-rays, CAT scans, too many blood tests, etc., the doctor was stumped. (the spinal taps I believe were to rule out Lyme disease that I had 5 years ago). He sent me on to a "highly respected & hard to get appt with" doctor in Richmond. (While waiting for this appt I spent a few bucks with a chiropractor).
As I was telling the new doctor my symptoms, he had a smile on his face. Once I finished, he too said that it sounds like RLS. He also said for me to stop taking antihistamines (since these could possibly aggravate the RLS) and to have my GP put me on some type on nasal steroid spray.
In addition to thanking those doctors out there who listen to their patients, I wanted to thank people like you. There have been many times that I thought I was crazy and a couple of times that I told my husband that I almost wished that I could just get rid of my legs.
Which brings me to the main point. In one of your reports (Primary Features of RLS - http://www.rls.org/prim_features.htm) RLS is described as bothersome, but not usually painful. This bothers me because there have been several occasions (usually lasting 2-3 days at a time) that the pain was unbearable. I have also read this in some of Patient letters on RLS on this same web site.
During my pregnancy I did not have the pain, just the numbing tingling feeling and the feeling that - at 2:AM - my legs were telling me to get up & go while my mind was begging me to go to sleep.
Since this time the feelings have gotten progressively worse and occur more often.
I plan to keep in contact with you to see what's new. Please continue to keep 'us' informed. What a great way to communicate to other people that they are NOT CRAZY.
By the way, my doctor is trying me on Sinemet 3 times/day with the last dose at bedtime. Also a low dose of Klonopin as needed.
Our Southern California RLS support group is associated with but separate from the RLS Foundation. The Primary Features of RLS is from the RLS Foundation site, not from our web site. What they are probably trying to say is that most RLS sufferers do not describe their leg discomfort as a pain, but rather as a very unpleasant feeling (often described as ants crawling up the inside of their legs). This unpleasant sensation (the medical term is dysesthesia) can be very disturbing and even prevent any sleep at all, but in most, it is not truly described as a "pain".
I would like to make some suggestions about your therapy. Sinemet is no longer used much for RLS, due to the high percentage of patients who get rebound and augmentation when the dose is higher than two of the 25/100 tablets per day (see our RLS Treatment Page for more detail on this problem). We now recommend Mirapex or Requip instead. Klonopin is often not the best sedative as it is very long lasting and often causes daytime sleepiness.
Ambien or Xanax is shorter acting and will work as well. Remember to take regular drug holidays of 2 days off your sedative (5-7 days off for Klonopin) every 2 weeks if you use them regularly.
Date: Saturday, June 26, 1999 6:37 AM Subject: An Update on using Mirapex and problems with a neurologist prescribing RLS drugs. (see previous letter on Page 18, April 8,1999)
On April 8, 1999, I wrote you to ask what the next step should be in treating my RLS (I also have FMS, MPS, arthritis, a bulging disc, etc.). I had been taking Ambien for sleep, which was no longer keeping me asleep. At the time, I was questioning whether I should consider adding Elavil, Ultram, or Mirapex to obtain better sleep.
You responded that Mirapex would be my best bet (and listed Permax and some others as alternatives).
I took your information to my PCP who referred me to a neurologist. The neurologist wanted to start me on Klonopin, three times a day and, thanks to your treatments page -- which I promptly whipped out to check on Klonopin -- I refused to accept the prescription because I work and need to stay awake (he admitted that would be a problem with Klonopin -- huh? Then why try it?).
He then asked what I had in mind and I told him Mirapex. He kind of barked at me that it's a Parkinson's disease medication and I explained that I'd read off-label studies about Mirapex's effectiveness treating RLS, and he prescribed it (I'm not sure if he knew of the studies and was testing me, or if he didn't know of them which is sort of frightening).
In any case, the initial dosage was .125 mg, three times a day and he wrote the script to have the dosage increased to .125 mg, four times a day after two weeks, then to 2x.125 mg, three times a day after another two weeks. I've been taking Mirapex for about five weeks now and have stayed at the initial dosage because it's controlling the RLS! It's incredible!
Initially, I took the third dose early-ish in the evening because I was afraid of insomnia, but that didn't seem to happen and I was still waking up multiple times in the night; eventually, I began taking the third dose at bedtime and that's made a big difference.
I feel as though I've gotten my life back...I've had the occasional twitch here and there, but they never develop into full-blown RLS; I'm sleeping better; I'm more rested; and I'm now able to begin tapering off some of the other meds I take.
I'm just so pleased with how this is working and I look forward to seeing the neurologist at the end of the week to let him know.
So, thank you, thank you, thank you!!!
I would like to offer a suggestion for the website -- if possible, it would be wonderful to have either links to various studies or the articles themselves. This would be particularly helpful for those of us who need to take off-label study results to our doctors to help educate them about a particular med. Just a thought. :-)
It is gratifying to hear that you are doing well on your current RLS regimen. The problems you noted with lack of knowledge about RLS treatment, even by a neurologist, is unfortunately very common. RLS is not considered as an important disease by the majority of health professionals and thus gets very little attention, even when landmark articles are published in the medical literature. There are so many articles for doctors to read that we have to pick and choose carefully to review even a small percentage of them. It is therefore not too surprising that the RLS articles rarely come to the attention of any doctors other than sleep specialists (and even many of them do not pay as much attention to RLS as to sleep apnea or narcolepsy).
Your neurologist prescribed the Mirapex as he would for a Parkinson's disease patient (which is all that is available in the PDR and drug company information). However, as you have read on our RLS Treatment Page and have noted from your own experience, RLS sufferers need a small percentage of the dose prescribed for Parkinson's disease patients.
In fact, your dose might even be decreased further. If you are active during the daytime and do not generally get RLS symptoms before the evening or bedtime, then there is not reason to take the daytime Mirapex doses.
It is not possible to add links to the RLS studies as they are published in medical journals which do not allow access other than through libraries or certain commercial literature search companies. As you already know, we reference the important articles on our RLS Treatment Page, so that anyone can easily look them up if they need more information. The full details on how to prescribe these "off label" RLS medications are not in the articles however, but only on our Treatment Page.
A Reply from Carol E.
Date: Sunday, June 27, 1999 3:17 PM
Subject: Mirapex dose for my RLS.
Thank you so much for you thoughtful response (as always!). I'm gathering the articles I've read previously to support the use of Mirapex (and its dosage) for RLS to take to the neurologist on Friday.
Just to clarify. I do have daytime RLS now (one of the great joys of life...it's not horrible enough just to have it at night!), but I did initially start Mirapex at .125 mg twice daily (I went about 3 weeks at that dosage). I found it wasn't controlling the RLS in the afternoon, so I added the third pill a couple of weeks ago. I still find that, some days, it starts up a bit in the late afternoons, but I know the goal is to control 90% of the symptoms and that's about where I'm at with .375 mg total.
Again, I appreciate your time!
Date: Monday, June 28, 1999 5:01 PM
Subject: RLS & Coumadin or Amiodaron.
After an EKG last Wednesday during which my heart went into "atrial fibrillation", my cardiologist prescribed Coumadin (5 mg), Amiodaron (200 mg), and took me off Naprosyn & Cytotec because of possibility of stomach irritation. I have also been on Demadex (20 mg) for a couple of weeks because of fluid in the lungs.
All of this information is leading up to a question: Since starting the above regime (no other medications were changed), if have been able to cut Mirapex (5 mg) from about four half tablets a day to one or two. Do you see any connection -- or is this just a temporary remission of RLS symptoms -- or is it too soon to tell? If Amiodaron has something to do with nerve impulses in the heart -- could it also affect the "nervous" legs? Or could the Coumadin have an effect?
Just received results on first pro-time with message to cut back on Coumadin. My INR was 4.8, so dosage is being lowered. If RLS comes back, .... just speculating. I keep looking desperately for answers to this RLS.
I doubt that the Coumadin has much to do with your RLS. Amiodaron is a drug that does affect nerves that conduct impulses in the heart and could possibly affect RLS. The problem is that RLS does have spontaneous remissions and worsenings, so it may be difficult to tell, unless you stop the drug and the RLS gets worse immediately.
Date: Monday, June 28, 1999 5:52 PM
Subject: What is a Half-Life of a drug?
I hate to sound like an idiot but what is a "half-life" in reference to medication? It's is mentioned quite often. I have a feeling it has something to do with how long one dose is effective. Is that correct? And what then is the half-life of Ultram?
Thank you for your efforts and hard work.
There are no dumb questions. The only ones who sound like an idiot are those who do not ask questions and thus stay uninformed.
The half life of a drug is the time it takes the body to break down the drug and remove 1/2 of the dose given from the body. For example, if you take a 100 mg of a drug with a half life of 3 hours, then 3 hours later only half of the drug left in your system (50 mg). After another 3 hours (6 hours after taking the original dose), you would lose another half of the drug (25 mg, or 1/4 of the original dose). In 3 more hours (9 hours after the original dose), another 1/2 of the previous drug level would be metabolized, leaving only 1/2 left (12.5 mg, or 1/8 of the original dose).
For most drugs, the drug becomes ineffective when metabolized to between 1/8 - 1/2 of the original dose. The shorter the half life, the faster the drug is eliminated from the body, and the faster it loses its effect and the more frequently it needs to be taken.
The half life of Ultram is 5.6 hours after a single dose and 7 hours after multiple doses are taken.
Date: Monday, June 28, 1999 10:07 PM
Subject: that funny feeling
This is the first site I found about RLS and I am so relieved! It is so frustrating trying to explain to people what you are feeling; they think you're nuts or are making it up or imagining it. I am up now at 1:05 am and cannot sleep.
My mother and grandmother both have RLS. Mine has been gone for some months now, but has come back with a vengeance! Just my right calf and right arm. Can RLS be partially caused from stress? Everyone seems to have a different med that works for them. I guess I'll just have to start trying something!!
Leanne in GA
Stress does seem to be a common trigger of RLS, but often the RLS comes and goes for no apparent reason. If you do decide that you need prescription medication for your RLS, Mirapex is currently one of the best medications.
Date: Wednesday, June 30, 1999 6:53 PM
Subject: Augmentation/rebound and Sinemet? (see previous letters this page, June 11, 14 and 17, 1999)
After my mail to you and with your replies on 3 previous dates (6/11,6/14, & 6/17), I just wanted to review your site to see any additions. After reading that the Sinemet could cause rebound and augmentation, I am not sure what this means. If you could answer this for me I will be so thankful, I am afraid to question my doctor about this. You know how they get so mad when you question them or what they have prescribed. They do not even like it when you tell them that you have researched something.
I see where several other new entries were made by someone just like me that was so glad to find your site. It has been a real big help to me, and it also helps to hear from others with the same problems.
Augmentation of RLS by Sinemet is a worsening of your RLS symptoms and the symptoms start occurring earlier in the day. The problem of rebound results in worsening of RLS symptoms as soon as the Sinemet dose wears off (4-8 hours after the last dose) causing the patient to have to take another dose at that time. Fairly soon, the Sinemet user needs the drug every few hours and it does not help as much and the RLS is much more severe. This problem occurs when the Sinemet dose is greater than two of the 25/100 tablets per day.
This problem with augmentation and rebound does not occur with Mirapex or Requip. The doctors who treat RLS frequently will use Sinemet rarely.
You should have no fear of asking your doctor questions about his treatment or about anything else that concerns your health. Any physician who does anything else but answer your questions carefully and thoughtfully is not fulfilling their duty as a doctor. Part of the service that should be provided by your doctor is education, and if this is not being done on any topic of interest to you, then you are being short changed. You (even if it is through your insurance) are paying for their services and if they do not answer your questions, then they have not provided you with proper service and do not deserve the payment for which they are billing you or your insurance company.
Would you accept that type of treatment from your car mechanic? Imagine if he told you that you needed to have a major engine repair, but would not discuss this with you? Would you let him do the work if he was not aware of some information about your car and would read up on it? If a physician gets upset because you bring in valid medical information that he does not possess, and he does not want to look at it, then you had better think hard about finding another doctor. Physicians cannot always know everything, but as long as they are willing to learn, they can take good care of you, especially if you have RLS.
This problem with certain doctors who are ignorant about RLS and who do not want to learn about it, is unfortunately a recurring theme. These doctors will not be able to treat your RLS correctly. In summary, this behavior is completely unacceptable for a physician, and if any RLS sufferer encounters it, they should immediately change doctors.
Date: Thursday, July 01, 1999 6:35 PM
Subject: Do sedatives work for RLS? (see previous letters, 5/24,5/26,6,3,6/7,6/24, 1999)
I've read that sedatives will not work on severe RLS. Maybe this explains why I'm not having any success with sedatives. It's frustrating to read suggestions from other RLS sufferers who have tried Xanax or herbal remedies such as teas or valerian root. I've tried (gullibly but optimistically) all of these and it makes my symptoms worse. My husband asked me how many times I'm going to try those suggestions on "soothing and calming" remedies before I get the hint that THEY DON'T WORK.
Is RLS so broad that one person can use a sedative and have success and another will suffer because of it? Could this be a tool by which to study the problem? I'm really looking forward to the day when they announce new findings that pinpoint exactly what causes RLS and exactly what to do for it.
Keep up the great work in our behalf.
Sedatives are helpful to promote sleep (and when you are asleep, you obviously do not feel your RLS) for patients with only mild RLS symptoms. If the RLS is not controlled and is moderate to severe, the sedatives will not be able to promote sleep.
You are also correct with your suggestion that RLS sufferers respond quite differently to all treatments, including medication. What works incredibly well for one, may not help another at all. The best current medications are the Parkinson's disease ones (Mirapex and Requip), which help a vast majority (but not all) of RLS sufferers. It is hard to know whether this variability of response to medication will be helpful in finding the cause of this disorder.
Date: Thursday, July 01, 1999 10:58 PM
Subject: Heating pad for RLS.
I have all the symptoms listed for RLS. When I travel I take sleeping pills and they help me to get to sleep before the RLS gets me. I have found something that has helped me so much at night.
On reading about hot baths one night I decided to use the electric heating pad. When I felt the initial creepy crawling feeling coming I applied the heating pad and I would say eighty percent of the time it disappears. Oh, how I hope that this will help someone out there! I was recently on a plane and had it for the full five hours. Have to find out how to plug my heating pad in on the airlines.
I never have RLS in both legs at the same time. Is this just me or is this everyone. I have had it in the right and then in the left and then back into the right. God Bless you all.
British Columbia, Canada
Thanks for your letter. You might want to consider using a Parkinson's disease (Permax, Mirapex) medication before long plane trips. It would make your life easier.
Date: Saturday, July 03, 1999 1:03 PM
Subject: Methadone for RLS?
I have had RLS since I was in my early teens. In the past ten years they have grown progressively worse. I have tried all the forms of medication that are suggested and what has worked is a combination of Xanax and Vicodin.
I have now been absolutely without sleep for36 hours. My doctor refuses to prescribe methadone which seems to be my last resort. How do I find a doctor who will work with me on this. I live in Oregon but would be willing to go to California if I could get help.
Any suggestions you might have would be greatly appreciated.
Have you tried the Parkinson's disease drugs, Mirapex and Requip yet? These will often work when the others are not helpful. There is nothing special about methadone, except that it is a very potent narcotic. Percodan/OxyContin, Dilaudid, Duragesic, Levo-Dromoran, and Morphine may work as well.
Many doctors are very reluctant to prescribe these drugs due to the abuse potential of these highly addictive drugs and that they are controlled substances. You do need to have a local doctor prescribe them, so that you can be monitored closely to assure that the drug dose is appropriate. With proper and close
monitoring, these drugs can be used very effectively and safely, with a low chance of tolerance or addiction to the drug. The best way to find a doctor who will treat you properly is to find one who understands RLS. Try going to an RLS support group where you should be able to find other RLS sufferers who can give you a recommendation to a doctor well versed in RLS.
Date: Sunday, July 04, 1999 7:37 AM
Subject: Side effects of Mirapex.
I have been using one .l25 tablet at or near bedtime for nearly a year. I still suffer from the restlessness while watching T.V. in the evening before bedtime. Recently I am taking 1/2 of the .125 tablet around 7 P.M. and a full tablet around 9 P.M. and this has helped my legs but I have been getting a lot of headaches. This happened when I first started taking Mirapex and my neurologist suggested that I take 2 Tylenol at bedtime which helped.
Gradually I was able to discontinue the Tylenol. My question is "Is it common to get headaches when taking Mirapex"? T
hank you for any help you can give me,
Headache is a known side effect of Mirapex, but it is not one of the most common side effects. We have only seen a few cases of headache with Mirapex, and most of these resolved with in a week or so of starting the medication. The advice you got to use Tylenol for a while until your body got used to the Mirapex was good advice.
The most common adverse effects associated with use of Mirapex (pramipexole) are central nervous system and gastrointestinal side effects. In double-blind, placebo controlled trials of patients with early Parkinson's disease (without concomitant levodopa), commonly observed adverse effects (> 5%) of pramipexole that were more frequent than placebo included nausea/vomiting (28%), dizziness (25%), drowsiness (22%), insomnia (17%), constipation (14%), asthenia (14%), and hallucinations (9%). Asthenia and dizziness occurred only slightly more often than in placebo-treated patients (14% vs. 12%, and 25% vs. 24%, respectively). Tooth disease was also reported. Adverse effects most commonly causing discontinuation of treatment were hallucinations (3.1%), nausea/vomiting (2.1%), and dizziness (2.1%).
Date: Monday, July 05, 1999 10:06 AM
Subject: RLS and depression meds, and Sinemet CR (see previous letter, this page, June 18, 1999)
I have been suffering with RLS and am now so depressed, probably because of the constant pain day and night, along with very little sleep. I have been tried on most of the anti-depressant medications with contain serotonin uptake inhibitors, but they have even made my legs worse.
I have heard that Bupropion (Wellbutrin) may not have the same reaction as it is a MAO Inhibitor, and wish to have your input into this. Is there any other ones that I should suggest to my family doctor?? The only Parkinson's disease drug I have not tried is Sinemet and am very leery, as I've heard horror stories about augmentation. Could you also respond to this, and what would be an appropriate dose, If I did start this medication, how long before I would know if it will work?
I am sorry for asking so much of you, but I am literally at the end of my rope, and don't know where to turn. Even if I could get rid of some of the pain and sleep for more than 3 hours at a time, I'm sure I would feel like life is worth living again!!!!!!!!
Thank you in advance, and I eagerly await to hear from you.
If your RLS is severe, Sinemet would be the wrong drug to try. Again, have you tried Mirapex and Requip? If none of the Parkinson's disease medications can help you, then a nightly pain medication (make sure to take regular drug holidays of at least 2 days off the drug every 2 weeks) such as a narcotic (such as Vicodin) or Ultram.
The best treatment for depression is to treat the cause of the depression (RLS, in your case) rather than using drugs for the depression itself. These medications can cause other problems (such as you have already noted with worsening of your RLS symptoms). The best antidepressants for RLS sufferers may be Remeron and Wellbutrin, as they have some dopamine like action. These drugs are not MAO inhibitors, but are in a class of their own.
Date: Thursday, July 08, 1999 8:12 PM
Subject: Acupuncture & Herbal Medicine for PLMD
I have had PLMD for the last two years. My fiancé calls it "happy feet". It got so bad that were we alternating sleeping on the couch every night. I thought that we were never going to be able to sleep together again.
Well, about seven weeks ago I started seeing a Chinese Herbalist. The movement at night has been greatly reduced. There are some nights when I don't have "happy feet" at all. I know that it has only been a few weeks but I am feeling very optimistic. I have acupuncture treatments once a week and I take herbs daily. I am very grateful for this site and I wanted to share my story with all those who have "happy feet".
Angela in Redondo Beach, CA
Thank you very much for your pet name for PLMD. If your "happy feet" become active again despite your current therapy, then consider Mirapex or other Parkinson's disease medication at bedtime, as they work very well for this problem.
Date: Friday, July 09, 1999 6:56 AM
Subject: Quinine for RLS
I have been bothered by RLS for 46 years. The first thing that helped me was "Miles Nervine" and I haven't seen it around for years. For a long time, I just suffered without any medication because when I would ask a doctor about RLS, he didn't know what it was.
Finally, I found a doctor who told me about quinine for leg cramps. I tried it and now I wouldn't be without it. It is the best thing I have tried and now I even get a good nights sleep.
Quinine works very well for leg cramps, but it only helps a very small minority of RLS sufferers. Many RLS patients have tried quinine to no avail, but as in your case, it may be the right medication for a few.
Date: Saturday, July 10, 1999 7:02 AM
Subject: How to find a good doctor for treating RLS.
I was so glad to find your site. I have had periodic symptoms for several years now. Recently it seems to have worsened. I'm having trouble sleeping through the night and at times my upper arms seem to be affected. It doesn't bother me every night, but then there are the nights where I just want to get up and run, run, run.
When it does get bad, I have taken Lortab a couple of times and it helps me to sleep through the night. I am at the point where I feel I should see a doctor. I am very hesitant to use any anti-Parkinson's disease drugs, but would not mind taking the others. Do you have a listing of doctors that might be familiar with this syndrome? It seems most of the people say they find doctors who are unfamiliar with the problem.
Thanks for listening.
There seems to be a lot of unnecessary concern for RLS sufferers about using the Parkinson's disease drugs. These drugs are generally very well tolerated. They are generally taken at about 10% the dose used for Parkinson's disease, which is why they have less chance of causing problems when used for RLS. The newer medications, Mirapex and Requip, are even more effective with less side effects. We highly recommend them if your RLS is not controlled with intermittent use of sedatives or narcotics.
If you want to find a qualified sleep doctor in your area check with the ASDA for state by state listing of accredited sleep centers to find one in your area of with others who have found good RLS doctors (go directly to the RLS Foundation's list of support groups in the United States).
Date: Saturday, July 10, 1999 12:51 PM
Subject: RLS questions about back pain, medications and activity triggering the symptoms.
This website is nothing less than a treasure chest for the unfortunate few who are afflicted with a disease that nobody, except its sufferers, cares to acknowledge. It took me three long years to be diagnosed with RLS and I cringe at the thought of how long it will take for me to be cured; your website at least eases the pain of that anticipation.
For the first two and a half years the syndrome exclusively appeared in my left calf, but recently it has occasionally crept up past my knee to affect the lower part of my thigh. And very recently symptoms of the disease have also occasionally appeared in my right calf (the greatest amount of discomfort however remains to come from my left).
I was put on Sinemet CR 50/200 nine months ago and I took one tablet a day an hour before sleep; early on in my treatment I was told by my pharmacist, because of the drugs potency, to instead take half a tablet a day. I did so for two months but because of an increasing discomfort I began to take ˝ of the tablet in the afternoon (6pm) and the other ˝ an hour before going to sleep (12am). The consequence of taking the two half tablets was a rebound the next day creating a great discomfort. In response to this I stopped taking the ˝ a tablet at 6pm, but continued the ˝ tablet at midnight. But would still get the rebound of the same intensity.
Because of this I plan to switch to Mirapex or Requip (whatever my insurance covers), (Question 1) and would like to know what a proper dosage would be to begin with? Also I am curious (Question 2) if with Mirapex or Requip I can have a tablet of say .250 mg and break it in half and still have the potency of a .125mg tablet?
Additionally, I have read that a pinched nerve may cause RLS; an EMG test showed that I have a pinched nerve (Question 3) and am interested in any opinions you may have about me seeing a chiropractor or physical therapist for treatment of that pinched nerve? Also eight years ago I pulled a muscle in the left side of my lower back. The injury left me debilitated for only 48 hours but today I once in a while have a mild discomfort in that left lower region. (Question 4) Is there any possible connection between this injury and RLS?
Also I have a job that makes me stand and move on my feet for about 7 hours a day, 5 days a week. The job is physically exhausting and (Question 5) I wonder if you can tell me how it affects (negatively I would imagine) the RLS disease. Or rather, is my job a cause of my RLS? Since the RLS began about 2 months after I started this job.
Again thank you for a wonderful site. It is a great service to all the people whose daily (and nightly) peace has been painfully forfeited to a very troublesome illness.
Mohammad from Huntington Beach
Our RLS Treatment Page discusses how to use Mirapex and Requip. They both should be started at the lowest dose (0.125 and 0.25 mg respectively) and then increased by 1/2 - 1 tablet at 5-7 day intervals until the RLS symptoms are controlled. Breaking a higher strength tablet in half does give you the same dose as the 1/2 strength tablet.
Injuries to the body, especially the back, can be the trigger of RLS. We do not understand why, but once the RLS is triggered, there is no relationship to therapy of the triggering problem (such as back pain). For example, after successful surgery to correct a slipped lumbar disc, RLS may worsen (or start), but will continue even after all the back pain/symptoms have resolved.
Chiropractic treatment has helped a small minority of RLS sufferers, but most do not get relief (except for some, there may be very limited, temporary relief). I do not think that there is much of a link between your mild ongoing back pain and your RLS, so treating it would also not be helpful for your RLS.
Standing for several hours a day may make RLS worse. In your case, where there is a direct temporal relationship between starting your new job and worsening of your RLS, one would have to surmise that there is direct link. Mild exercise is helpful for most patient's RLS symptoms, but very hard exercise (or hours of activity that tires you and your muscles) will often worsen the RLS.
Date: Monday, July 12, 1999 6:04 AM
Subject: What is the maximum dose of Requip? (see last letter Page 19, June 6,7, 1999)
I feel better than I have in 4 years, when I realized that RLS was the cause of my exhaustion much of the time. This change is because of Requip, which I've been taking for 3 1/2 months.
Right I'm taking Requip as follows: 3 .25 mg tablets one hr before sleep, then 1 1/2 .25mg tablets when--not if--my legs wake me up, usually around 3 am, sometimes earlier, for a total of 1.125 mg.per day.
Problem: what's been happening is that I'll do fine for a while on a lower dose-2-3 weeks or so--but then I start waking up at 5 a.m. and am unable to get back to sleep.
Is it ok to go to 2 .25mg tablets for the second dose at around 3 am? This would bring the total dose to 5 pills a day. When is one considered maxed out on Requip?
Thanks for your help,
The average patient needs between 2-5 Requip tablets (.25 mg tablets) in a 24 hour period. Some mild cases will only need 1/2 or one tablet, but severe cases may need up to 10-15 tablets per day. I am sure that there are RLS patients who need and take more than even 10-15 tablets per day, but once you get up to that dose, side effects become more common, and it is really difficult to know how much the Requip is really helping. Also, although augmentation rarely occurs, I have seen it happen in patients who seem to need very high doses.
Despite what I have written above, there is no defined upper limit for Requip when used for RLS. The upper limit for Parkinson's disease is 24 mg (96 of the .25 mg tablets) per day, but as you can see, that far exceeds the range of therapy used in RLS sufferers.
Date: Monday, July 12, 1999 12:51 PM
Subject: Mirapex or sedatives for PLMS.
I have been diagnosed with severe PLMS two years ago. I'm 50 years old female, divorced and recently moved and am living alone. I've been diagnosed with PLMS, Adult Diagnosed ADD as well as Fibromyalgia and now RLS. I currently take Synthroid for Hashimoto's Thyroiditis and Prempro along with Premarin (.625) for menopause;
I've been treated with Sinemet and Sinemet CR but had severe rebound and evening augmentation. I've also tried Neurontin. I do not feel rested and I continue to wake up numerous time during the night. While taking Ritalin (of which I no longer take) I could at least function mentally and the fog in my head lifted.
I'm now working with my third neurologist who has put me on Mirapex (1 hour before bedtime) building up to 0.75 mg. Starting with week one @ 0.25 mg; week two @ 0.50 mg. and then 0.75 mg. thereafter. I am now in the process of week one, day 4, and I'm still waking up 4-6 times each night and feeling exhausted. Is four days too early to tell that the Mirapex is not working even though my legs feel less tension. Since I cannot tell if my PLMS is improved; I can only go on how rested I feel, and I still feel exhausted. Does Mirapex work on the waking up or just the limb movements? I don't have a problem going to sleep, it is staying asleep that is causing me so much distress.
Prior to starting with this Neurologist I was taken off Sinemet (by my last Neurologist) to prove to me that the Sinemet did work and that I should take more Sinemet to stop the RLS! He also felt that the Ritalin interfered with my sleep and would not prescribe it. I therefore, changed Neurologists! I have also stopped taking Zoloft for depression but feel that with the lack of proper sleep that I am headed back there.
Should I request Ambien or Xanax or is this too soon to tell? I have 4 weeks until my next appointment. I feel that if I can sleep uninterrupted, that my complaints of ADD, FMS, PLMS and RLS will slowly dissipate. Is this wishful thinking?
It is unfortunate that even well trained neurologists are not up to date on using Sinemet for RLS. It would certainly spare a lot of pain and suffering for RLS patients who have to go through rebound and augmentation.
Mirapex works for the waking RLS discomfort and it is one of the only medications that actually decreases PLMS. By decreasing the PLMS, Mirapex should improve your sleep by decreasing the arousals from the PLMS. Ambien and Xanax decrease the amount of arousals from the PLMS, but do not have a great affect on decreasing the amount of PLMS.
Ambien or Xanax is a good choice to add to Mirapex, so that the dose of Mirapex can be kept lower. You should be sure to take regular drug holidays on the sedative/sleeping pills. There are only two ways to know whether you should add a sedative or increase the Mirapex. One is to see how you feel in the daytime with either therapy, and the other is to have a sleep study (obviously much more difficult and expensive) to see how either therapy works for the PLMS arousals.
You are right, that if you can sleep well, you might have less (or even none) of the Fibromyalgia and ADD.
A Reply from Talfar R.
Date: Tuesday, July 13, 1999 6:56 AM
Subject: PLMS, Xanax and night terrors/nightmares.
Thank you for your reply. I tried to contact my neurologist yesterday just before emailing you and he is out of the office this week. I had left over supply of alprazolam 0.25 mg Generic for Xanax (dated 9/30/97) and tried one tablet at bedtime. I took 0.25 mg of Mirapex one hour before bed. I keep waking up at least every 1 1/2 hours or so; I go back to sleep easily enough only to repeat the same pattern. Is there a difference using Xanax vs. using the generic alprazolam? Also could the alprazolam have lost strength?
I do not normally take any Rx medication without asking my doctors, however, I am so very exhausted. My right leg is my most active leg and it feels less tense and not as active as before; my left leg seems to be normal. I've never been able to sit completely still. I've wiggled and jiggled all of my life.
I also grew up having night terrors (screaming with "no memory" of doing so) as well as having nightmares (yelling with a memory of the dream), walking and talking in my sleep as well. The reason I mention this is that I do have a fear of having a night terror and having police knocking at my door figuring that I'm being attacked or something. I do not know the last time I had a night terror as I now live alone (my children now grown and living on their own). I have not read anything in the letters or information that have mentioned night terrors and wonder if that would have anything to do with my PLMS or RLS.
Thank you again for your support and informative information. I really appreciate your help.
Tarpon Springs, FL
Your dose of Mirapex is still low, so you might not even need a sedative when you are at the right dose. The Mirapex can be increased every 5-7 days, but I generally increase by increments of .125 mg (the smallest strength Mirapex tablet) each 5-7 days. This way you might arrive at a lower effective dose than when increasing with the .25 mg tablets. Also, the body has a better chance to adjust to the dose changes, thus minimizing the likelihood of side effects.
There is really no difference between Xanax and generic alprazolam, but there is a good chance that the potency of the old medication may be quite reduced. Check with your doctor about getting a new prescription, and you may even need up to 2 of the 0.25 mg tablets at bedtime until you reach the right dose of Mirapex that lets you sleep through the night.
Night terrors occur during stages 3 and 4 deep sleep, which luckily for you, decreases as you get older. That is one of the main reasons why most children outgrow the night terrors. You should have little to worry about having more problems with night terrors as you get older. The PLMS occur during stage 2 sleep, so it has little to do with night terrors or with dreaming sleep (REM sleep).
Date: Monday, July 12, 1999 2:52 PM
Subject: Ephedrine for RLS?
I just read an Email in the Restless Legs Forum Website about Ephedrine. The person using it says that contrary to what it does to other people (makes them hyper) it calms her right down. Now I know different things work for different RLS sufferers but is this a possibility? It seems that it would be helping the lack of dopamine in the brain like ADHD medications do. What do you think?
I know that Mirapex is the number one choice for treating RLS and I'm sure I'll be trying it soon. I just want to explore all avenues.
Thanks for your super help.
Ephedrine tablets (Primatene tablets) are available over the counter for treating asthma. It generally has an adverse affect on RLS, but as you stated, some drugs may work quite differently for a few RLS sufferers. We however, do not recommend trying the "long shot" medications that have an extremely small chance of success. Stick to the medications that help most and will have less chance of causing you trouble.
Date: Monday, July 12, 1999 8:26 PM
Subject: Fioricet for RLS?
I was curious about the pain reliever Fioricet and whether it was effective in treating RLS.
Thanks for your help.
Fioricet contains 3 different active ingredients. The first is butalbital which is a barbiturate type of sedative. It does induce sleep, but if used regularly, is quite habit forming. Barbiturates are no longer prescribed as sleeping pills due to this problem.
The second ingredient is acetaminophen, which is simply Tylenol. This has no role in RLS. The third ingredient is 40 mg of caffeine (about equal to one cup of coffee) which will make most RLS sufferers get worse. Fioricet is not a bad medication for migraines, as it is used only on a very intermittent basis.
There is also Fioricet with codeine (30 mg of codeine), which would work as well as a Tylenol # 3, as the active ingredient of both for RLS is codeine.
A Reply from M.P.
Date: Monday, July 12, 1999 11:50 PM
Subject: Fioricet therapy and Varicose Veins problems and RLS
Thank you for your quick response. The reason I was asking about Fioricet is because I'm allergic to Vicodin and Codeine. Anyway, I needed other options not containing those particular ingredients. Since I had Fioricet in my cupboard (for migraines) I wondered if it worked. Thanks for the info and let me know if you know of any other possible helps in the pain relief category.
I hope this doesn't sound like a stupid question, but I had heard that RLS could be linked to poor circulation. Firstly, is that true? Secondly, if that is the case has anyone done a study on the relationship between varicose veins and RLS? I have them in my calves on both legs and I know it must hinder my circulation.
Ultram (tramadol) is a good alternative to the narcotics. It is a synthetic (man made) pain killer, that has no relationship to the narcotics (other than they both provide pain relief). Consider using Mirapex or Requip to control the RLS, so that you do not need pain killers very often.
RLS does not seem to be a circulation problem. There are many patients with severe circulation problems and most of them do not have RLS. In addition, most RLS patients do not have circulation problems.
There was one study in 1995 that found improvement in RLS patients who underwent sclerotherapy for their varicose veins, but this finding has not been repeated. At this point, we would not recommend sclerotherapy of your varicose veins for treating you RLS.
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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