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Sent: Saturday, March 04, 2000 1:40 PM
I have been diagnosed with PLMD. I am presently taking 2 Mirapex tablets before bed. .125 mg. I wake up every half hour. Am hoping this will subside as I get used to the medication. My husband works nights, and when he gets into bed at about 4 or 5 in the morning, he puts his arms around me and he says my whole body is twitching.Not a lot though. Is this from the PLMD or something else. I thought PLMD was only in the legs.
Thank you for your help,
It is difficult to tell you what the twitching could be from, as that is a fairly vague descriptive term. Since you have PLMD, it is always likely that this disorder may be the cause of any twitching that is noticed. Even though the majority of PLM's come from the leg muscles, the resultant shaking of the rest of the body may seem like a twitch to your husband.
PLM's usually come in groups of jerks, with about 20-40 seconds between movements. If this is what your husband notices, then you may have some residual PLMS. However, if you are not being bothered by the PLM's (and have no excessive daytime sleepiness), then they do not need any further treatment.
Sent: Sunday, March 05, 2000 4:38 AM
Subject: Need German equivalent for medication
I was delighted to find your website, there is so much information on it. I am trying to help my mother, who is suffering from RLS for many years now. In the past few years, the symptoms have worsened and she took part in sleep laboratories and several tests and has been trying several different drugs, none of them very helpful. Most of them have side effects which are worse than the condition. She lives in Germany and I sent her over some pages I printed from your website.
Unfortunately all the names of the described drugs mean nothing to her, as they would all be called something different in Germany. I can't find much info on German pages either. So I was wondering, if you could advise either a site, I could look up for her, which gives information relevant to her or could you publish a list of drugs with their equivalent German names? I'd be particularly interested in Mirapex, as this seems to be mentioned a lot. What's that drug called in German? I'd be very grateful for any help, she is nearly going crazy with RLS, it's destroying her life and there MUST be something out there to help.
Thanking you very much,
Although brand names of drugs (such as Mirapex) may vary considerably from country to country, the generic name for the drug has much less variation (pramipexole is the generic for Mirapex). On our RLS Treatment Page, I always put the generic name of the drug in parenthesis after the various brand name of the drugs.
Some local pharmacists (and especially the hospital and university based ones) have international pharmaceutical references that should be able to look up the brand name of any generic drug in other countries around the world.
Sent: Monday, March 06, 2000 4:19 PM
Subject: Educating my MD
I have finally found a doctor who at least acknowledges RLS and even suffers from a mild case occasionally. I was thrilled when I found him. He put me on Sinemet at the lowest dosage possible which was great in the beginning. I finally got sleep! Now I've had to increase the dosage to two pills before bedtime. I'm experiencing my RLS earlier in the day and I've also developed a deep and painful ache in both legs.
At my last visit I discussed with him the fact that the RLS is coming on earlier in the day and his answer is take more Sinemet. When I told him that I've read that Sinemet causes augmentation and rebound and taking more isn't the answer he seemed to get defensive and told me that he'd never heard of this. He also doesn't think that the aching in my legs is RLS related either. I told him that my mother also suffers from RLS and is on Mirapex and Percocet. His reply was that he's never heard of a patient suffering from RLS being prescribed Percocet.
I want to keep him as my primary care physician. He seems like a kind and understanding individual, but gets very firm with me when I make suggestions. How can I educate him without offending him? Any suggestions would be very helpful.
Your problem with your doctor not understanding what to prescribe for RLS is unfortunately a much too common one. There are several reasons for this frequent dilemma for RLS sufferers.
The first problem is that there are no "official" drugs for RLS. All the RLS drugs have other FDA indications, so that we are actually using them "off label" for RLS. That means when your physician looks up the drug in his PDR (Physicians Desk Reference, which contains all the drugs with their prescribing information), he cannot find RLS amongst the indications for using the drug, nor can he find the recommended doses used for RLS. This makes many doctors very uneasy about prescribing the RLS drugs, especially narcotics which are controlled substances and can get them into trouble if they prescribe them without proper medical indications.
The second problem is that most doctors know very little about RLS (and as you pointed out, many do not even acknowledge that it even exists), let alone that medications are available to treat the disorder. If they do look in textbooks, the information is very outdated and often incorrect. This accounts for why your doctor prescribed Sinemet as it has been in the textbooks for about 10 years (even though we rarely use it now).
The last reason for doctors having trouble with treating RLS, is that even when they get the long list of medications, it is difficult for them to figure out which medication to try first, and how to mix and match them together. Currently there is no place to get this particular information other than through trial and error (which most of we RLS specialists have figured out with this method over the past few years). There may be "official" literature available in the near future to help guide physicians with this problem.
In the meantime you can copy the information from my website and show it to your doctor. If he does not accept web based medical education material, get a brochure from the RLS Foundation which outlines the various drugs used for RLS. You can even bring him the references on the medical literature about Mirapex, which is probably the drug that you should be taking. You might not even need a narcotic with the right dose of Mirapex.
Sent: Tuesday, March 07, 2000 4:13 PM
Subject: Mirapex Tolerance Update
When last I wrote to you, I noted that I had developed a tolerance to Mirapex, and that I had been experiencing less and less relief notwithstanding an increase in the dosage. Ultimately, I was taking a total of four of the 0.25 mg. tablets per day. Daytime relief was non-existent; night time relief was minimal. You suggested that I discuss Permax with my neurologist and I did so. My neurologist (whom you earlier helped me to locate and whom I believe to be highly knowledgeable in this matter), felt that, because Permax and Mirapex were somewhat related, and since I was deriving some benefit from Mirapex, another route should be pursued.
He was inclined toward Neurontin, but deferred prescribing because of my earlier experience with that medication. Instead, he suggested that I continue with Mirapex, and use Ultram as needed. Years ago, I had used Ultram as a primary medication. With time, it ceased to work. I thought that it might help on an as needed basis. Anyway, I remembered a comment made by someone (I think you), that sometimes, less medication is better, and that it might be counter productive to keep increasing the dose in a vain attempt to attain 100% relief. What to do?
I reduced my daily Mirapex dose gradually from four 0.25 mg per day to three. The relief was the same as with four. Some days, I only use two Mirapex tablets. Again, the benefits appear to be the same. Generally, I now take the Mirapex primarily in the evening. As far as the Ultram is concerned, by using only as needed, I find that it is terrific. I take two 50 mg. tablets in the morning, and the relief lasts for hours. It fully addresses my daytime discomfort. On those evenings in which the pain is intractable, I supplement the Mirapex with two 50 mg. Ultram, and sleep without discomfort.
Whether coincidence or not, however, I have noted that I am awakening around 3:30 each morning. Still, I am getting more sleep than in recent memory. When next I meet my neurologist, we were to discuss Neurontin if the Ultram didn't work. The way things are going, I don't think that I'll return to Neurontin.
Thanks much for listening. I'll keep you posted,
It sounds as if you are doing more or less the right thing for your RLS (with the aid of some of my previous advice). The Ultram works now (as opposed to in the past when you probably used it too much as a primary medication and got tolerant to it) because you are using it on an as needed basis.
It might still be a very good idea to switch from Mirapex to Permax. They both are dopamine agonists, but Mirapex acts more specifically on the D2 and D3 subtype receptors than does Permax. This seems to make a significant difference in its RLS action (this is not yet well understood, but seems to be a reproducible phenomenon). I have lots of RLS patients that alternate every few months between Permax and Mirapex and are doing very well with this regimen.
Neurontin is also a reasonable choice, but since we already know that you have had good results with the dopamine agonists, the above plan may work better.
A Reply from Jerry S.
Sent: Wednesday, March 08, 2000 2:20 AM
Subject: Re: Mirapex Tolerance Update
One thing that I forgot to mention was that, for some reason, the evening dose of Ultram seems to make me itch all over. This was reminiscent of my earlier experience with codeine medications. Presently, I'm willing to endure the itching in lieu of RLS; if the Permax will allow for itch-free relief, I'm willing to give it a go.
By the way, years ago, a supposed sleep expert (not my current neurologist) did prescribe Permax. He looked in his Physicians Desk Reference and prescribed the full dose for Parkinson's Disease... ten times the recommended initial RLS dose. I opted not to take. I will discuss again your recommendation when I next see my neurologist.
Sent: Wednesday, March 08, 2000 12:48 PM
Subject: Serum ferritin levels and RLS?
I just called to find out that my iron ferritin level is 26. (Had it done in November, but they told me it was normal and I wanted to find out the exact number). Is this worth pursuing and taking an iron supplement? I have had severe RLS in the past. I started taking a different calcium and had 3 very good months (Dec., Jan., Feb.), only waking up 2 or 3 times a night and going right back to sleep, but the last few nights have been waking every hour or so. This blood test was taken before the three good months so it's hard to figure out.
Also, the weather has really gotten warmer the last few days. Who knows. I also read that calcium can interfere with iron absorption and I can't do without my calcium.
Thank you for your reply,
Diana B., PA
It has been found that ferritin levels below 45 mcg/L are associated with increased RLS problems. With severe iron deficiency, serum ferritin levels are below 18 mcg/L, while mild to moderate iron deficiency, serum ferritin levels are between 18-45 mcg/L. If you are below 45 (as in your case), then you should be on iron supplements and it may have a good chance of improving your RLS.
Sent: Thursday, March 09, 2000 7:21 AM
Subject: Klonopin a difficult drug
Would you be able to suggest a slow taper for Klonopin? I have been taking it for 10 yeas (dose 0.75 mg) and when I tried to taper by 1/4 of 0.25 mg, last week, it was a failure. The drug is surprisingly addictive.
Klonopin and the other benzodiazepines (Valium, Dalmane, Ativan, etc.) can be very addictive. If you are taking Klonopin for RLS, and using it only at bedtime (which is the only way that it should be used), then you may need something to take its place. In the USA we have Ambien, which is a non-benzodiazepine sleeping pill, which can be added to Klonopin while tapering the Klonopin dose. Unfortunately, I believe that this drug is not yet available in Canada.
Instead, you could try adding a shorter acting benzodiazepine, such as Xanax (adding 1/2 or more of .25 mg tablet) while decreasing Klonopin slowly as you have already attempted. The shorter acting benzodiazepines are easier to take drug holidays from and therefore can be adjusted more readily (taken on a more intermittent basis) to avoid addiction/tolerance from occurring. Remember, that even the shorter acting sleeping pills have a reasonably high addictive potential if not used correctly.
Sent: Monday, March 13, 2000 1:12 PM
I have been taking 2 tabs of .125 mg Mirapex, supplementing with Tylenol #3 if needed. I found Mirapex to be extremely affective in relieving my symptoms until recently. I have also found that Tylenol #3 (even 1/2 tab) is the cause of frequent nightmares. They have ended since I stopped taking the Tylenol #3. Lately the Mirapex does not seem to be helping. The onset of symptoms is starting before bedtime, but because the medication makes me drowsy, I don't want to take it early.
I have tried Vicodin with it, but have found it to be not as effective as the Tylenol #3. I also worry about the addictive capability of Vicodin, as this seems so common. I have tried increasing the Mirapex dose to 3 tabs., but it seems to make me very nauseous. I was wondering how addictive the Vicodin is, what is a safe way to take it, if nausea, vomiting is common when increasing the Mirapex dose, or if I should stick to two tabs. and try a different analgesic?
Thank you and I hope you can help,
It is not too common to get nausea from a low dose of Mirapex. You might want to switch to Requip, which is quite similar, but may not cause nausea in your case.
Most find Vicodin better than Tylenol # 3 as it is a little stronger. You may want to try Darvon or if you are worried about addiction (very unlikely at the dose that you are using), change to Ultram, a synthetic pain killer with very little addictive potential. With RLS, it is often difficult to say what is the best plan, as almost every RLS sufferer responds differently to the same medications.
Sent: Monday, March 13, 2000 3:19 PM
Subject: Sleep Study for RLS
I just received the results of my sleep study. I know they are useless, but now I have documentation and a neurologist who understands and will work with me. My medication right now is as follows: 5 mg of Hydrocodone and one .125mg of Mirapex at 5pm. Then, 50 mg of Ultram and another .125 mg at bedtime. I'm going to try very hard to keep at this level of medication.
My neurologist told me horror stories of other RLS patients who she can't control anymore because they have become addicted. Mostly men! Isn't that strange?
Anyway, I guess this is a letter of hope to other sufferers. I experienced 210 leg kicks per hour and had 3 hours of sleep during the study. Finally, someone believes me. It's great.
Sent: Monday, March 13, 2000 10:32 AM
Subject: RLS in Ireland
Thank you so much for your information on RLS. I am an Irish 27 year old who has suffered for 3 years and recently took it upon myself to seek help only to be told That RLS was something I had to live with and was all in my head. I have found going to bed with a cold water bottle very helpful as it seems to numb the " jiggles" also I find putting a little deep heat on my toes helps in hot rooms. thanks for providing information on what seems to a lot of people a laughing matter!
Sent: Wednesday, March 15, 2000 9:34 AM
Subject: Worsening RLS
Though I've had RLS, but didn't know what it was, for most of my life, it took off at a gallop after a knee replacement three years ago. (I'm 77.) The Percocet I was on after the surgery I found, coincidentally, helped the symptoms a lot for a while. Then, I started the DHA neuromins and have been on them for 1 1/2 years with good relief (plus 1/2 Percocet and a Tylenol). I'm also taking calcium, magnesium, iron, folic acid, and lots of all the B vitamins.
But the Percocet became quite ineffective at that dose (1/2 tab). My doctor suggested Mirapex, but I'm reluctant to start any anti-Parkinson's drugs because of the possible rebound effects. So, instead, he have me OxyContin 10mg and said, "Sleep well!", but I didn't. Now I'm on the 20 mg OxyContin and still not sleeping more than an hour from it. Sometimes I'll take a 30 mg Restoril, but I don't sleep from it either. (Last night 1 hour.) And the RLS is getting steadily worse. I DON'T LIKE all these addictive drugs and want to be free of them. They don't work anyway!
Is it time to bite the bullet and start on the Mirapex? Will it let me sleep? I have no life now as I am so exhausted all the time.
Mirapex is definitely the right choice of drug to try next. It was quite predictable that the OxyContin would result in tolerance as you were already getting tolerant to a lower strength narcotic. Increasing your narcotic (by increasing the dose of your existing pill or changing to a stronger pill) once you notice that it is not working will just result in tolerance to a the more higher narcotic levels. Rebound and augmentation are unusual problems with Mirapex.
Sent: Wednesday, March 15, 2000 7:13 PM
Subject: Ultram and Seizures
If a person is taking Mirapex and Ultram, what would you suggest as a dosage for the Ultram? I've read that there can be danger of seizures. Is that only with a high dose? Are most Neurologists happy with Ultram and its effectiveness? Thanks for your great website and help.
Seizures are rare with Ultram. The dose of Ultram is independent of Mirapex. Usually, one 50 mg tablet (the only strength available) every 4-6 hours as needed works well (1/2 a tablet can also be used for mild RLS symptoms). Two tablets can be taken at one time occasionally for more severe problems.
Sent: Thursday, March 16, 2000 9:01 AM
Subject: MS or Parkinson's disease related to RLS?
I've had restless leg syndrome for five years or so, but my symptoms are changing and increasing (daytime symptoms too). I'm having drug dosing problems too. I have two questions: 1. Is there a link (or perceived link) between RLS and Multiple Sclerosis? 2. Is there a link (or perceived link) between RLS and Parkinson's? (I read on the user group that they're 'cousins,' but that can mean lots of things, including meaning it's wrong.)
Thank you in advance for any advice you can provide.
There are no links between RLS and either MS or Parkinson's disease. When these occur together it is just due to coincidence as RLS occurs in 5-15% of the population making it common enough to coexist with many other diseases. Parkinson's disease and MS medications are used to treat RLS, so many have incorrectly assumed that there must be a link.
Sent: Friday, March 17, 2000 11:06 PM
Subject: Abdominal RLS?
Several months ago I was diagnosed with RLS even though I had no discomfort in my legs. My creepy, crawlys are in my abdomen. I fit the profile for RLS and the treatments - Mirapex presently - seem to alleviate the problem. Does anyone out there experience the symptoms of RLS anywhere other than the legs???? Would appreciate any relevant response.
Thanks so much,
RLS most often occurs in the limbs (legs of course more often than arms), but it is not unusual for RLS sufferers to get RLS complaints in other muscles. We have heard from RLS sufferers who have their symptoms in their chest or back muscles, and even similar to your, the abdominal muscles. You are not unique with respect to this RLS manifestation.
A Reply from Diane
Thank you ever so much. Just knowing that there are others with my particular symptoms manifested in the abdomen is a relief - now I know I am not crazy. Because of the results of the overnight "all wired-up" sleepover at our local clinic which showed erratic leg movements, my doctor diagnosed RLS. He does not understand that the leg movements and overall body movements were and are in response to the extreme agitation in my abdomen. As far as he is concerned, RLS occurs only in the legs.
Thanks to all the information I have gleaned from the internet, and especially thanks to your letter, I will not feel so helpless nor foolish when I communicate with my doctor
I appreciate your response,
Sent: Monday, March 20, 2000 7:36 PM
Subject: RLS and pregnancy.
Thank you for giving people the opportunity to talk with you about this painful subject. I'm 33 years old and have had RLS since about 13 years old. up until about 4 months ago I would have temporary relief from it anywhere from one day to a week then it would hit for how ever length of time and so on. but one day it never went away. I always get it at night when I go to bed , not usually during the day (thank god).
Now it is every night and most days and has sometimes gone into my arms. I should also add that I'm 11 weeks pregnant. I have been taking Ultram 2 tabs a night and Ambien 1 tab night and it is the only thing that helps. When I found out I was pregnant I stopped all, but didn't sleep for 5 days straight and my legs bothered me about 18 hrs straight so I had to go back on.. No one around here knows much about RLS just that it "bothers your legs" . They don't know the pain and discomfort and mental anguish you go through every night..
I was told you might help with some info on RLS, Ultram, pregnancy and any other drugs safe to take while pregnant. I'm afraid to try anything else now because I know the Ultram is the only thing to work so far but I'm also afraid of the Ultram. I called the drug place and all they said is "normal dose caused no problems in lab animals, 3x's the dose caused problems... " I only take 2 at bed. I have had one miscarriage already, I'm a high risk pregnancy now and am desperate for your help. I just want to get through this pregnancy with a healthy baby. can you help me???
Thank you for your time,
Taking RLS drugs (or any drugs for that matter) during pregnancy should always be considered very carefully. Below is the information of the relative risks of the various RLS medications. You should review this list with your personal obstetrician and decide whether or not you should take any of them. Class B medications have some risk and I would certainly hesitate to take any medications in classes C, D and X.
The risk of RLS medication in pregnancy is as follows (Class A,B,C,D,X, where A is the best and X is the worst and should never be taken during pregnancy; Class A drugs are quite safe and have a proven track record in pregnancy, Class B drugs have limited data and experience and should be used only if clearly needed, Class C drugs generally have no adequate or well controlled studies in pregnant women and should be used only if the potential benefit justifies the potential risk to the fetus):
Class B: Pergolide (but limited data), Ambien, Percodan (short term use)
Class C: Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Tegretol, Neurontin, Catapress
Class D: Percodan, Xanax (and most benzodiazepine sedatives), Klonopin, Darvon, codeine, all for long term use.
Class X: Restoril
Sent: Monday, March 20, 2000 7:38 PM
Subject: Mirapex and Klonopin
I am taking two of the .5 mg pills of Klonopin and two of the .125 mg tablets of Mirapex. It has been almost 4 weeks on the Mirapex and a week and a half on the 2 Klonopin. I have noticed some mood swings, and irritability. I am also experiencing "brain fog". I can not concentrate. But I am sleeping very well with no PLM's. I do not have RLS.
Today for the first time I had a lot of energy and felt good other than the brain thing, Do you think this is a side effect of the Mirapex? And if it is do you think my body will adjust to it over time? Do you think just the Klonopin would work? I would be grateful for any suggestions.
Mirapex is the best medicine for PLMD (leg jerks that cause micro-arousals during sleep and thus make you sleepy during the day). It is the most likely medicine to abolish the leg jerks, rather than just prevent the arousals, which is what the sedative drugs (Klonopin) do.
Klonopin is the most likely cause of your "brain fog". It has a very long half life and results in daytime sleepiness/sedation in the majority of patients who take it. This drug is prescribed very often for RLS/PLMD as it was the first sedative used for this condition and is still in the textbooks. I almost never use this drug, but instead use the shorter acting sedatives (Ambien, Xanax, etc.) when necessary.
If you get on the right dose of Mirapex, the PLMD should be abolished and you should not even need a sedative. They way to figure this out, is to increase the Mirapex slowly (by half or one .125 mg tablet weekly) until you wake up refreshed in the morning.
A Reply from Debby
Sent: Wednesday, March 22, 2000 6:04 AM
Subject: Mirapex and Klonopin
I wrote to you yesterday re: Mirapex and Klonopin and "brain fog". I neglected to say that the Mirapex gives me insomnia. That is why the Klonopin was prescribed. Do you still think I should keep increasing the dosage of Mirapex? (I now take 2 .125 pills)
I am very confused. My GP gave me 7 samples of Sonata and told me to taper off the Klonopin. My sleep doctor when he finally called me back said he wasn't sure the "brain fog" was totally from the Klonopin and not from the Mirapex too! He said the decrease the Klonopin from 2 pills to 1 and 1/2, and see what happens. I did that last night (instead of the Sonata) and I did wake up a couple of times and I am tired today.
Do I do what my sleep doctor says or my GP who is not a sleep specialist? By the way I do have an appointment with another sleep specialist next week for a second opinion. My sleep doctor from the beginning has prescribed "outdated" drugs. The first drug I tried was Sinemet!!!
Thank you for your advice again,
Mirapex is known to cause insomnia. It has also been implicated in daytime sleepiness attacks, but this is generally at doses higher than 1.5 mg (12 of the .125 mg pills). As far as your brain fog, your GP or your sleep specialist may be right. My hunch is that it is the Klonopin, but I can not say for sure that Mirapex is not the culprit. Sometimes only trial and error will be able to decide which is the problem drug.
In any case, Klonopin is very often a problematic drug and should rarely be used at bedtime for RLS/PLMD. Ambien and Xanax are better choices. Sonata is a new drug which is quite similar to Ambien, but has an even shorter half life, and thus may result in wakening up in the middle of the night (after it wears off). Once you are off Klonopin, you can then assess if that was the drug causing your brain fog, and then see if you have to change Mirapex.
Sent: Tuesday, March 21, 2000 1:24 AM
Subject: Question about narcotics and RLS.
I have just found your website. It has provided me with so much information and I am grateful. Now I am beginning to understand just what it is I am dealing with. I a 30 year old woman who has suffered with this awful disease for close to 8 years. (that's when I first started noticing the problem) It has gotten progressively worse with time. So far I have tried the following medications: Klonopin (worked at first, stopped working as time went on), Restoril, Antihistamines (both made symptoms worse), Tegretol (ineffective), Ambien (ineffective), Paxil (taken along with Klonopin, worked for a time but eventually went off the medication). I began taking Zoloft recently and it has exacerbated my symptoms.
So far, the only relief I have had is with narcotic painkillers. (Vicodin, Percocet, Demerol) Unfortunately, because of the nature of these medications, I have been unable to find a doctor willing to prescribe them for the RLS. (I took them for back pain) I have tried other meds, including Valium, but that only works about 10% of the time. I have a difficult time describing my condition; I call it "jumpy legs". It is difficult to explain to people exactly how this makes you feel. Sometimes I become so distraught that I lose control. It is a great comfort to me to know I am not alone and there is somewhere I can go for information.
I am currently on disability and unable to work, having been diagnosed with depression, OCD and mild bi-polar disorder. I have been disabled for 2 years and taking medications. I took Klonopin for RLS (specifically prescribed for it), but it stopped working, also have taken Paxil, Restoril, Ambien, Trazadone and other drugs I have forgotten. None have worked and some worsened my symptoms. Currently I take Butalbital for tension headaches, Ranitidine (Zantac) for an ulcer, Zoloft and Vistaril and my symptoms seemed to be aggravated by one or all of these medications.
Is Vicodin or one of the meds containing codeine an option for me? I have taken them before for back pain and they worked like magic on the RLS. I was on the pain killers, along with Valium, for a back injury for quite some time and had no ill-effects when going off them, nor did I become dependent. I actually became resistant and to this day only get relief from the higher dosages. I have not taken them for several years except for rare instances for my back or ulcer, however I still required more than the prescribed dosage, usually 1 1/4 to 1 1/2 pills.
I also have had a problem convincing my physician that a narcotic is the only thing that's worked well for me so far. I understand a reluctance to prescribe them, but with no history of abuse, why would they not at least try it? Due to my psychiatric diagnosis? I have never overdosed or attempted suicide.
Vistaril is a strong antihistamine that generally makes RLS a lot worse, so be careful with this drug. Zoloft, like Paxil and other antidepressant medication can worsen RLS as often as helping it.
Before considering long term narcotic usage, have your doctor prescribe Mirapex or Requip. This class of medication should control your RLS so that you may only need the occasional pain killer medication. Ultram ( a non-narcotic) pain killer also works well and can be alternated with the narcotic ones on an as needed basis. As you already require higher doses of the narcotics (a sign that tolerance and addiction are already beginning), I would be very careful when using these medications on a regular basis.
Sent: Tuesday, March 21, 2000 9:45 AM
I have a friend who was on the experimental drug Pregabalin. She has severe back pain which she was taking the drug for. She also has RLS and said the drug helped a lot in that area. Have you heard of this drug, and do you recommend it?
This is a new experimental drug that is indicated for treating epilepsy (seizures). Just as several seizure drugs (Neurontin, Tegretol) are helpful for RLS, this drug may also help RLS sufferers. Until the drug is released for general use, it will be difficult to assess its true potential for treating RLS.
Sent: Thursday, March 23, 2000 7:02 AM
Subject: Tolerance to Ultram and fear of Mirapex.
I have been taking Ultram since September. Initially it worked very well. My legs relaxed and felt terrific although I continued to wake during the night. I now find that the Ultram is less effective in controlling my pain ( I do take drug holidays). It takes a long time before it kicks in. Is it best to take the Ultram before going to bed, or later when I wake up with the pain. I've tried both and find I often need to take another one later on, and then I'm awake and have trouble going back to sleep. I average about 4-5 hours of sleep at night, and am feeling exhausted. At least my head isn't as fuzzy as it was when I took Klonopin and Trazadone.
In the past you have suggested I take Mirapex. I've been reluctant to because I had awful side effects with Permax, consisting of nausea, feeling like I had the flu, tired, and developed tinnitus which I still have after being off the Permax for a year. I took it for 8 weeks and couldn't live with the side effects. Therefore I'm uneasy about Mirapex. Would a sleep study be helpful? I don't think I have PLMD because I don't notice that I kick at night(except intentionally to relieve the RLS) nor does my husband notice it. However, we now spend most of the nights in separate beds because I feel I keep him awake when I'm so agitated from being awake and dealing with the pain in my legs.
Again thanks for your help and responding to my question regarding Mirapex, and whether my bad experience with Permax with be repeated with Mirapex. Also is a sleep study advised. My MD is open to my suggestions. You're the only link most of us have in the medical world as to understanding and treating RLS.
TONS OF GRATEFUL THANKS,
Since your main problem is RLS which prevents you from sleeping, I would not worry much about PLMD. If your RLS problem is resolved, and you have daytime sleepiness (of course, not related to your medications), then PLMD would be a concern and a sleep study might then be helpful. Otherwise, I can see of no benefit in you doing a sleep study.
Mirapex and Permax are both dopamine agonists, but that is where the similarities end. Mirapex is a more specific D2 and D3 receptor agonist, while Permax acts more generally on all the dopamine receptors. They are also chemically quite distinct. I have had many RLS patients who could not tolerate Permax at all who have done very well on Mirapex, without any side effects. It is definitely worth a try, even keeping in mind the very bad reaction you had to Permax. Just start with 1/2 of the .125 mg tablet and increase by 1/2 tablet per week if necessary.
Mirapex also will generally take care of PLMD, so if that was a second problem in your case, it would likely be resolved with this drug (thus eliminating the need for a sleep study even if PLMD is one of your problems).
There is a possibility that you are getting a little tolerant of Ultram, or your RLS may be getting worse. Sometimes, taking a long drug holiday (a month or so) may resolve this type of tolerance problem. If you start Mirapex, you will find that you need much less (if any) Ultram.
A Reply from Sue H.
Sent: Saturday, March 25, 2000 7:28 AM
I have been taking Ultram which has become somewhat ineffective. For the last 2 nights I took OxyContin 20mg and slept "deliciously"!!!! I'm wondering if I could take this for 2 weeks and then shift to Ultram for 2 weeks, thereby, creating a drug holiday for each pill.
PS these pills were given to me by a friend who didn't get any help from them
Many patients find they can alternate Ultram with their narcotic medication and prevent tolerance/addiction to either. Some will use one of the medications for 5-12 days, then use the other (the less effective one) for a 2-4 day drug holiday. If both drugs work equally, then alternating every few days may even be quite reasonable.
We do not know exactly which receptors Ultram acts on, but from my practical experience, it seems that it must be different from the narcotic ones as the above treatment plans seem to avoid addiction/tolerance.
Sent: Thursday, March 23, 2000 12:51 PM
Subject: Dry mouth, tooth decay, Mirapex, and RLS
Hi, I have written before but now I am wondering if I am having a fairly unique problem. I have had RLS all my life (am 76 now). It got worse after hip surgery last July (I didn't know what it was actually until just before the surgery). I had no official attempts at treatment before the hip surgery, just lots of Bufferin and Tylenol. The Percocet I was given after the surgery helped a lot. At any rate, I have gone the usual (for RLS sufferers) route of not finding a physician who could help.
I finally, between some of the physicians and information from you, hit on a treatment that seems fairly effective. Two 0.25 Mirapex before bed, maximum 4 Vicodin ES/day. I always take 2 at night, the other 2 divided as needed, usually 1/2 tablet at a time. Most days I don't need 4. However, my question is this: I have had good teeth all my life. I go to my dentist every 4 months. Recently I had to have a gold crown replaced. The dentist found some decay in some teeth so filled them. Yesterday when I went for my routine cleaning, he found more decay. This increase in tooth decay has happened in the 4 months since my last visit. He asked me if I were doing anything different because it seemed as tho my body biochemistry was changing.
Needless to say, I wasn't happy about what is going on with my teeth. I thought back and the only thing really different that I was doing was taking the Mirapex and the Vicodin. I looked up Mirapex side effects and one way down on the list is dry mouth. Then I thought back some more and realized I have had a dry mouth for quite a while. And, lack of saliva can cause increased tooth decay. Is it possible that Mirapex could be the cause of the lack of saliva? If so, I'd like to quit taking it (rather have the RLS than rotting teeth).
Can I just stop or should I taper it off. I am going to a different neurologist with whom I can communicate. He OK'd the treatment I am on. I have a call in about the Mirapex. I thought I'd ask you and anyone else if they have any knowledge of a relationship between Mirapex, dry mouth, lack of saliva.
On a different note: I have found if my legs burn a lot or itch and I don't want to take any medication at that time, if I rub Ben-Gay on my legs, it seems to help. Probably some kind of counterirritant.
Thanks for this site and all your help. Please answer this email.
Dorothy from Phoenix
Dry mouth is listed as a side effect of Mirapex when it is used for the treatment of advanced Parkinson's disease, but was not found as a problem in treating early Parkinson's disease. I have had few if any complaints in my RLS patients about dry mouth, which may be due to the significantly lower doses used for this disorder.
This does not mean that in your case Mirapex may not be the cause of your dry mouth. The only way to confirm this is to stop the medication (you do not need to taper off this medication, but your RLS will get worse immediately off the medication) and see if your dry mouth is resolved. If it does improve, then you can see if this is the cause of your increased tooth decay.
If Mirapex is the cause of your problems, you might consider Requip and see if this helps your RLS without causing a dry mouth. It may take a little try and error to figure out what is the right treatment.
Sent: Friday, March 24, 2000 7:01 PM
I am 72 and have had RLS for something like 20 years. In my case the sensation is thatof severe itching around the ankles and lower legs, usually starting some 15 minutes after going to bed. For many years the only solution was to get up again and get my legs as cold as possible, then lie down again and hope to get to sleep before they became warm enough to begin itching again.
Even so, the itching would return, waking me any number of times until about 4am when it would subside, but as many of you know, by that time sleep is of very little value by then.
It wasn't until fairly recently that I realized that these symptoms were less frequent, and almost by accident discovered that (in my case, anyway) every occurrence took place the night after eating beef. I experimented over a period of time, and found that the two things were definitely related, and I am happy to say I now have relief.
While I'm sure there are many other reasons for the wide variety of symptoms that come under the heading of RLS, I pass this along in the hope that others might find an equally simple solution. It's worth a try, and it worked for me.
Sent: Saturday, March 25, 2000 9:09 AM
Subject: Trouble sleeping while on Mirapex
Really appreciate all the info and updates re RLS and PLM. Having a diagnosis is such a relief after years of dealing with all the crazy-making symptoms and sleepless nights. Now the confusing treatments are the challenge. Just started Mirapex (2 of the .25 mg tabs at bedtime) with 95% reduction of symptoms in the early evening and before bed; however, awake after a few hrs and cannot fall back asleep. .
Therefore, just started taking Klonopin (1 of the .5mg tabs) but am experiencing that "brain fog". Xanax seems to be the medication of choice for the sleep "cocktail". Will continue to work with my NP who is just beginning to do research in the area until I find a Doc who is RLS savy in Seattle vicinity.
It sounds as if you are doing well with your research and your NP. Xanax or Ambien are good choices, but be sure to take regular drug holidays. You did not say if your problems falling back asleep are due to RLS or just plain insomnia. If it is not due to RLS, then it might be that you are getting very good quality sleep and especially compared to previously, you do not need to sleep much longer.
Sent: Monday, March 27, 2000 9:33 AM
Subject: Valium and Mirapex for RLS.
Just wanted you to know that your site has provided me with much helpful information. I have tried Sinemet and had sleep problems (nightmares) even trying the generic brand in the lowest dose. That was not so bad but still had crazy dreams. I've had spinal surgery three times in the past 15 years which according to your articles might be a causative factor.
My legs don't bother me much during the day, some times the extreme restlessness sets in just before bedtime or an hour after I go to bed. My doctor let me have Valium after I told him it helped and I can usually get a good nights rest if I take 5 mg at bedtime. A lady at my church has RLS real bed and her doctor recently put her on Mirapex and she says it has worked like a miracle for her. I will try it later after I talk to my doctor about it.
I am a retired pharmacist, 75 years old.
Be careful with Valium, as it is a very addictive drug. Please take regular drug holidays (at least a few days off every week or two). You can consider using Ambien for your drug holidays if necessary.
Mirapex is the right choice to try at this point. It should help your RLS enough, so that hopefully, you will not even need a bedtime sedative such as Valium.
Sent: Thursday, January 24, 1980 4:50 PM
Subject: Is it stress?
About three years ago, I underwent a sleep study after having problems with sleeping and extreme sleepiness during the day. Due to the different sleeping environment, and the attendant forcing me into trying to sleep two hours earlier than what I had written on the sleep study form, I had difficulty falling asleep and didn't sleep long enough to show any evidence of a sleep disorder. The sleep doctor said there was nothing he could do for me.
My sleeping problems persisted. I tried over-the-counter sleeping pills without any success. I was getting sick a lot. I noticed one time when I was just about to fall asleep, I experienced a sudden jerk. It seemed that once this happened, I had more difficulty falling asleep the rest of the night.
The next time I was sick and visited my family doctor, I mentioned this problem of jerking. He said it was myoclonic jerks and there is treatment. He prescribed me with .25 mg of clonazepam to be taken at bed time. Well, to my surprise I had no difficulty falling asleep and slept through the entire night feeling very well rested the next morning.
I thought my problems were solved. Unfortunately, I built up a resistance to the clonazepam. Even though I was able to fall asleep, I wasn't able to sleep any longer than fours hours. My doctor suggested that when I wake up in the middle of the night, take another .25 mg of clonazepam. This didn't work because it took about an hour for it to kick-in and didn't really put me back asleep. It left me going to work tired and feeling a little clumsy.
The doctor decided to combine 10 mg of Doxepin with the .25 mg of clonazepam before going to bed. This seemed to make it harder for me to sleep and it left me feeling sleepy and disoriented during the day.
For the next two years, the doctor decided to increase the dosage of clonazepam rather than use another type of medicine. At one point, I was taking 4 mg of clonazepam before going to bed. It made me feel very relaxed with no difficulty sleeping.
However, because of the side effects of daytime drowsiness and throat and lung congestion. I decided that this wasn't the way to go, and the doctor doesn't really think I have any kind sleep disorder other than stress. Therefore, I took the doctor's advice and began withdrawing from the medication. After two years of dependency on this drug, I found this very challenging. I began dropping the amount of dosage by a mg per week. I had no problem at 2 mg. But once I went below that, I experienced days with very little or no sleep at all. I felt extremely nervous, withdrawn, and had a very hard time performing my job as a computer programmer/analysis. I stuck to it thinking that I can only go so long without sleep. I felt that sooner or later, I would no longer be dependent on this drug.
Well, over a year has past and I'm still taking 1 mg before going to bed. My current prescription is to take between .5mg to 1mg. The prior three months, I was able to sleep okay taking .5mg per night but this was due to restricting my sleep to maybe 3 to 5 hrs per night. With taking this lower dosage and restricting my sleep, it left me feeling very tired at work and skipping my workouts. Therefore I went back up to 1mg. I've been on 1mg for the last three weeks and starting to have difficulty sleeping again.
One thing I noticed when the drug isn't working, my legs don't feel relaxed and also experience jerks. I have a tendency to fidget with my feet and do a lot of stretching. I even notice some minor pain in my thighs. I can't seem to lie still in bed. I may have a mis-interpretation of RLS. I thought it occurred after falling asleep with a lot of kicking. After reading about insomnia, it was stated that insomnia can be caused by an uncomfortable feeling in the legs causing a person to fidget his/her feet and even stretch a lot. I wonder if I could have some form of RLS, or could it be what my doctor suggest which is stress. I would rather consult with my family doctor than have another sleep study. For in my case, a sleep study cost a lot of money with no results.
Please send me any suggestions.
The jerking movement that tends to wake you up as you are falling asleep is likely a hypnic jerk which occurs with the transition stage (stage 1) to sleep. This movement is somewhat different than myoclonic jerks (PLMD) associated with RLS as the whole body is involved in this jerk rather than the calf muscles as with PLMD.
Your problems with clonazepam are unfortunately quite classic and demonstrate all too well why this drug should rarely (if ever) be used for sleep disorders. The best way to wean off of this medication is to add another sleep medication such as Ambien that will allow you to get some sleep as you further taper the clonazepam. Ambien is not addictive (so far, to the best of our knowledge) and it should be easy to use this drug on an as needed basis once you are completely rid of clonazepam.
Your new leg problems are mildly suggestive of early RLS. RLS will generally also occur when sitting/not moving in the evening.
It does not sound as if a repeat sleep study will add much to treat your sleep problems.
Sent: Tuesday, March 28, 2000 1:29 PM
Imagine... others out there who hear the same ridiculous solutions! If one more doctor told me it "was all in my head", I was going to staring at jail time for assault! I am 29 and have been experiencing extreme restless leg syndrome for 9 years. (I often felt this as a child as was looked at as if I were an alien when I tried to explain it) I have tried hot baths, herbal remedies, acupuncture, massage, Klonopin, Elavil, Quinine, Sinemet, Tylenol w/ codeine... you name it and I've been game for it. Anything to allow me to get a decent nights rest. (By the way, anyone who tells you acupuncture doesn't hurt is lying through their teeth!) The only thing I haven't done is a sleep clinic because of the fact that I cannot lie still.
I am also being treated for depression. I have noticed that when the RLS has been quieter and I am able to get some sleep, the depression is minimal. This has definitely affected my job - I am a 911 trainer and a volunteer firefighter. I have an extremely hard time getting up in the morning - because that's when I seem to get the most sleep. I have had more doctor's appointments than can be counted and am in the red for sick time. Unless you have RLS, you cannot understand just what we go through. I have found that Ambien works pretty well to mask the restless leg and allows you to get a decent amount of sleep.
What's so very frustrating is that what works for one person doesn't work for the other. Do you every think they'll figure out what causes this?
Ambien does work well to mask the symptoms of RLS and let you sleep. A better way to do this is to try Mirapex or Requip which should relieve the RLS symptoms and reduce the need for a sleeping pill (if needed at all). This works for most (85% +) of RLS sufferers.
A Reply from Karen H.
Sent: Wednesday, March 29, 2000 6:26 AM
Subject: RE: RLS
Thank you very much. Just reading some of the letters under your group was a major help. I had a doctor's appt late yesterday afternoon (after I sent the below message) and was started on 300 mg 3x a day of Neurontin and 50 mg at bedtime of Ultram. I actually slept through the night without waking once! I was able to get up on time this morning and feel rested. After surviving on 1-2 hours a night for the past year this feels like a miracle! Hopefully this will continue.
Again, thank you very much for your help.
Neurontin is a good choice as primary treatment for RLS. I generally prefer to start with Mirapex or Requip, but that is my personal treatment preference. With the right dose of Neurontin or Mirapex, you should need very little Ultram or bedtime sedation.
A Reply from Karen H.
Sent: Friday, March 31, 2000 6:16 AM
Subject: RE: RLS
Thank you for your time... may I speak for everyone with RLS that has found your site when I say that you have improved our daily lives. So far so good with the Neurontin. I've slept three nights in a row now, waking only once last night but I am so sleepy during the day. Is this a side affect? (I take 300 mg 3x a day.) I haven't needed the Ultram (50 mg) the past two nights. I would assume that I don't have to take this every night, just as needed?
Neurontin may make you sleepy if you take it during the day. If you do not have RLS complaints during the day, there should be no reason to take this medication other than at bedtime. Ultram should be used on an as necessary basis only.
Sent: Tuesday, March 28, 2000 6:45 AM
Subject: Mirapex no longer does the trick
I am having to take four .25 mg Mirapex to help my RLS. Not only does this leave me with extreme daytime sleepiness, but even this relatively large amount does not do the trick. Last night, for instance, two hours after taking the last two Mirapex, my arms and legs began moving endlessly. I feel my RLS has definitely worsened in addition to the Mirapex no longer being as effective as it once was. Also, when I take this amount of Mirapex, I get terrible daytime fatigue. This sleepiness is so pervasive during the daytime hours, I can barely function on many days.
In short, I need help and advice on what I might try that's new. I know my doctor here would give me anything you think appropriate. Is there something I could take along with a lower dose of Mirapex perhaps? Or should I take a complete holiday from Mirapex for awhile and try something else?
My family doctor gave me some Ultram yesterday which she thought I would need for a little problem I have. I was afraid to take it. But I wonder if I might try this with the Mirapex to see if I get better results.
Thanks a million for any help you can give me.
It is likely that you have become somewhat tolerant of Mirapex. Increasing the dose would help temporarily, but would also increase your unwanted side effects. You should go on a drug holiday from Mirapex, likely for at least several weeks.
Permax may be a good alternative as there does not appear to be any cross tolerance between Mirapex and Permax. I have several patients who alternate every several months between Mirapex and Permax as soon as they develop tolerance to one of these drugs. It seems that one can alternate indefinitely between these two drugs without any problem.
Ultram is always a good choice for acute RLS relief. Some RLS sufferers like it better than even some of the more potent narcotics, while others find it does not work as well (very typical for most RLS remedies). Try it and see if it helps while waiting to change over to Permax.
Sent: Sunday, April 02, 2000 1:30 PM (see previous letter 1/24/2000)
Recently at my doctor's instructions I have increased dosage to 0.5 mg twice daily. This has provided sleeping relief, but I am constantly tired. Shall we attempt to reduce the daily dosage. I will work with my doctor, what do you recommend.
Mirapex can cause daytime sedation at higher doses. If most of your RLS is at bedtime, I am not sure why your are taking the Mirapex in the daytime. Unless you have significant daytime RLS complaints, it is better to take the entire dose before bed.
Sent: Sunday, April 02, 2000 1:39 PM
Subject: twitching legs
I hope you can help. My husband has kidney failure and is on dialysis, 3 times per week for five hours at a time. For the last couple of months his legs have been twitching rather severely at night which of course means no sleep. His renal specialist has prescribed sleeping tablets for this, clonazepam and sometimes he has to take three tablets before they take effect. This then affects him considerably the next day as he's half asleep.
Do you have any suggestions as to what he can do to stop his legs from twitching? I would be very grateful if you could help.
Roughly 1/3 of dialysis patients will have these twitchy lets (PLMD). Although clonazepam is the most frequently prescribed medication for this problem, it is not the best one. It tends to cause daytime sedation in most people who take it.
Xanax and Ambien may be much better choices and will not leave your husband sleepy during the daytime. Although there is no medical literature on some of the newer drugs used on dialysis patients with PLMD, a trial of Mirapex or Requip may be of great benefit.
A Reply from Carla Z.
Sent: Friday, April 07, 2000 9:16 PM Subject: twitching legs
Thanks for your reply early this week. My husband showed the e-mail to his specialist and he has now been prescribed Alprazolam. This may be one of the medications you mentioned but with an Australian name. Serge is sleeping a lot better even though his body is still twitching - I've already noticed a change in him as he seems more like his normal self.
What does PLMD stand for?
Thanks again for your help - we really appreciated it Carla Z.
PLMD stands for Periodic Limb Movement Disorder.
Sent: Sunday, April 02, 2000 2:59 PM
Subject: Klonopin and Zoloft for RLS
I have severe RLS, and rarely can sit still to watch TV, and cannot fall asleep most nights before 3-4 AM. My GP is very understanding, and we have been "going down the list" of medical solutions from the site at rls.org (the RLS Foundation's site).
Sinemet worked for a few months, then I developed augmentation. I could not keep Permax down for more than 10 minutes, and Mirapex had no effect at all. He now has me on Klonopin, which the RLS.org site recommends, and I can sleep but am in a total fog the next day. It seems from your advice that I should be taking Xanax or Ambien instead of Klonopin to avoid the brain fog.
I also need to take Zoloft -- depression runs in our family. I realize that this is probably making my RLS worse, but going off is not an alternative. Would you recommend staying on Zoloft and switching to Xanax or Ambien? And if so, which is easier on the stomach (I have trouble keeping many pills down).
Thanks SO much!
If you did not notice worsening of your RLS with Zoloft, then I would not worry about stopping this drug for your RLS. If it did worsen it, then a change to Wellbutrin or Remeron may have less effect on your RLS.
Although Klonopin (clonazepam) is recommended by the RLS Foundation's site, I find that it causes too much daytime sedation (as in your case). Ambien and Xanax are generally much better. Remember to take regular drug holidays of at least 2 days off the drug every 2 weeks. Pain killers (Vicodin or Ultram) can be used on your drug holidays to help you get through them.
There should not be any stomach problems with these pills.
Sent: Sunday, April 02, 2000 7:54
PM Subject: Worsening RLS with bladder medication.
I am hoping someone can give me some helpful information. Since a hysterectomy is August of 1999 I have had bladder problems. Very frequent urination about 20 times daily. Finally I discovered that Tofranil would help retain urine. I also decreased my fluid before sleep. Frequently I use exercise to help my symptoms also. The voiding has lessened. It was about 20 times a day now I can void about 6 or 7 times a day. My diet is very strict for I follow a diet that excludes anything irritating the bladder. That includes citrus, milk, apples, beans, dairy products, beer, vitamin b and c, and so on.
But the last month restless legs have been a problem for me. I have had problems with restless legs but not like it is now. I sleep a short while then my legs will jump for about one hour and half at night time. This last two weeks have been difficult for I don;t get a lot of rest and sleep. Are the bladder problems and restless legs connected? Is restless legs a symptom of Fibromyalgia? Please write back and share what information you do have.
The most obvious link between your various problems is that Tofranil (a tricyclic antidepressant medication) is a common medication that worsens RLS. It is very likely that stopping this medication would solve or significantly improve your problem. There are other medications that can be used instead of Tofranil that should not exacerbate your RLS condition.
There may be a link between fibromyalgia and RLS but this is not fully understood.
Sent: Monday, April 03, 2000 1:03 PM
Subject: Mirapex helped my RLS
I can't tell you how many sleepless nights I have spent reading your web site. The information I received here helped convince me to finally seek medical help.
I'm 58 years old and have been fighting RLS since my only pregnancy at age 23. I'm assuming the pregnancy caused its onset because there is no family history of the disease. In the last years my RLS has become overwhelming.
Armed with information from your web sit I visited my family doctor. He prescribed Sinemet, which worked well for a few months. When the symptoms returned worse than before he referred me to a neurologist who prescribed Mirapex. I take one .125 mg at dinner time (if needed) and one at bedtime. I can't believe how this tinny little pill has given me my life back.
Thank you for taking your time to make this site possible. I'm certain you are helping so many more people than you're aware of.
Pregnancy does not cause RLS, but somehow it brings it out. Most patients then notice that the RLS goes away for many years until for some unknown reason it comes back. Your case is a little more unusual (but not rare) in that your RLS never went away.
Sent: Wednesday, April 05, 2000 11:04 AM
Subject: Restless Leg Syndrome
I had been searching the internet for information on Restless Leg Syndrome when I came across this website. After reading information about RLS, I realized that I do not suffer from it, yet. I can relate to the symptoms described, and have experienced them before. It only occurs when I am laying around late at night feeling tired. The strange part is that I can either alleviate it by walking around or moving, or going to sleep. I read that most people who suffer from RLS are middle-aged. I am only 20, and I have been experiencing these symptoms occasionally since I was at least 14, however the problem has never kept me up at night. I was wondering if this means I could develop RLS sometime later in my life to the extent described by patients who can not sleep because of it.
Other strange things I've noticed: I experience it more when I am home on break than when I am at college, which is strange if RLS is indeed stress related. Also, I haven't experienced the symptoms as much in the past couple years. I know that RLS may be related to iron intake, and I have been taking vitamins with iron for the past couple years. Could this be why I do not have the symptoms anymore?
I realize that my problems are no where near as difficult as those who really experience RLS, but I was wondering if you could give me any information about my situation, or tell me if it is likely I will develop RLS later in life. Thank you.
Actually, your description is quite classic of RLS, but in its early, mild stages. RLS at your stage is generally a waxing and waning condition (over the short run of several years), but it will usually progress and get worse over several decades.
It is possible that iron intake may have helped your condition, but that may be hard to prove at this point. You should probably continue with your vitamins with iron indefinitely (at this point you should not supplement with higher potency iron tablets).
RLS may or may not be related to stress, it is really a very individual response.
Sent: Wednesday, April 05, 2000 4:58 PM
I would like to ask about kind of restless leg .. called "akathisia" .. if you would give me any information about it I would be really thankful.
Akathisia is motor restlessness which occurs with RLS. It is the feeling that these patients get that makes them feel uncomfortable if they do not move. It is not a variant of RLS, but rather just one of the components of this disorder.
Sent: Thursday, April 06, 2000 7:44 AM Subject: Mirapex and gastroparesis
I am taking .25 mg of Mirapex at bedtime for restless legs syndrome. I've been diagnosed with gastroparesis and the doctor mentioned that it could be caused by the Mirapex. I looked in the PDR but could not find that listed as an adverse effect. Could gastroparesis be caused by Mirapex?
How long would it take of not taking Mirapex to find out if that's the cause? Would Permax be likely to cause the same problem?
Thanks, Dianne M.
Grand Rapids, MI
Gastroparesis would generally not be listed as a side effect of a medication, but the results of this problem (nausea, bloating, etc.) may be listed. The only way to tell it to stop the medication. You should know after 2-3 days. Permax may be quite similar (or worse) with respect to this problem.
Sent: Thursday, April 06, 2000 1:59 PM
Subject: RE: Re: having same exact experience as "letter 26"
Thanks for your reply..still experimenting..the Mirapex trails initially were okay..but then was feeling very 'hung over' all day..cut the dose way down to one half of .25..and stopped taking the Klonopin which was way to heavy ..with the long half life... got a prescription for Xanax instead..taking lowest dose at bedtime with the low dose of Mirapex..worked last night with no hang over today so far..may not need the Mirapex at all..is this disorder seasonal..I've read that cold and sudden excessive activity can worsen symptoms..my winters are spent in Tahoe..doing daily cross-country skiing for 2-3hrs..so much to learn...that's my experience for the day...
Some RLS sufferers have noticed a seasonal variation, but this occurs only in a minority of RLS patients. Remember to take drug holidays from Xanax regularly (at least 2 days off every 2 weeks). Using Mirapex may lessen the need for sedatives, which can be addictive.
Sent: Friday, April 07, 2000 7:43 AM
Subject: RLS SUGGESTION
Judging by the entries I have just read , my restless leg complaints are still minor although they have been a part of my life for the last ten years. (I have always been a very poor sleeper. The restless legs are sporadic and I can't account for the sleep problems on the nights I am free of the leg agonies). Both are becoming more and more frequent and debilitating.
I have only recently told my doctor about my leg problems because I didn't suppose anyone else had such freakish nights. So I cannot contribute as yet to tips on medications except to say that sometimes Tylenol double strength helps.
The simple treatment that does usually help is to elevate my legs on a plump but soft pillow. No one seems to think this is a circulation problem so why elevating the legs helps is puzzling. This helps the unhappy legs, it does not necessarily allow me to go back to sleep.
This is a valuable web site. Thanks so much,
It sounds as if you have a separate underlying insomnia problem in addition to your mild RLS. Judicious therapy with the newer sleep medications (Ambien/Sonata) may be quite helpful and non-addicting.
Sent: Friday, April 07, 2000 10:03 AM
Subject: RLS, pain & exercise
I wrote to you last month about a connection between Mirapex, dry mouth and tooth decay. I've done some research since then. From that research (including phoning Upjohn who were very nice), I think my tooth decay is really not related to Mirapex so I am continuing to take it. (two of the 0.25 mg before bedtime).
My question this time is: Is there any connection between exercise and worse RLS symptoms? And is quite extreme pain, especially in the thighs part of the RLS symptoms? Why is the pain mostly in the thighs? It feels as though the muscles are sore as they would be after exercise.
On the exercise, I do water aerobics 3 days a week. It seems as though the RLS symptoms get worse sometimes on the days I have the exercise (especially thigh and leg pain). Also if I have to walk quite a bit, it gets worse. I am not going to stop the exercise as it has other benefits that I don't want to give up. Is there anything I can do that would alleviate the thigh pain? I am trying to build up the muscle. As I said in previous letter, I am taking Vicodin as needed and it helps the pain.
Thanks again for having this site and taking the time to answer all of the questions.
Dorothy from Phoenix
Mild exercise most often helps RLS, but as you have already found it, this can very from patient to patient. Vigorous exercise generally worsens RLS.
Sent: Friday, April 07, 2000 11:34 AM
Subject: Cancer link
Researching RLS because we are beginning to suspect that our mother is afflicted. She never exhibited any symptoms until her Non-Hodgkin's lymphoma entered her spinal fluid and she has received chemo/radiation. There is permanent brain damage either due to the radiation or the fact that the cancer is in her central nervous system. IS there a link to cancer or to radiation/chemo?
There is no link between cancer/chemotherapy and RLS. The only link that I can think of, is that your mother may have had mild underlying RLS, and now if she is more sedentary, she is giving the RLS more opportunity to be active (as RLS occurs more at rest).
Sent: Sunday, April 09, 2000 12:41 AM
Subject: Try chondroitin sulfate and glucosamine
I've had restless legs for 40 years, (I'm 50), to the point where I was only sleeping about 4 hours a night. I didn't know what it was for the longest time, and no doctor I ever told about it thought it was anything but psychosomatic. You might know how frustrating that is! Anyway, I have arthritic hips, and a friend suggested Chondroitin sulfate and Glucosamine for that (you can get it at Costco - it's called Pain Free) and three weeks after I started taking it I started sleeping a little better.
That was two and a half years ago, and now I sleep through the night most of the time. (That used to happen only about three nights a year). I have to get the word out about this, because it is a miracle to me. I've had this curse since I was about 8 and it about drove me nuts during my pregnancies, and the older I got, the worse it got. Now I almost sleep normally. I looked all through the whole RLS website and found nothing about the Chondroitin, and I know that if it works for me, it must work for at least SOME others.
It is such a benign substance that it is worth it for everyone with this malady to try. Especially since the drugs they refer to as treatment for this thing are so toxic. Knowing how bad the RLS was during my pregnancies, and how most of the drug treatments would be contraindicated for pregnant women, the Chondroitin is especially important for them to try. Wish I'd known about it then. So I will systematically go through all the support group leaders on this list and get the word out. Please try it.
I have had many of my RLS patients on the combination of chondroitin sulfate and Glucosamine, but none of them have noted any improvement in RLS. Like many treatments that work for certain RLS individuals, it is unusual for it to work on the general RLS population.
We will post you information on our web page and will see if others can benefit from your advice.
Sent: Sunday, April 09, 2000 1:41 AM
Subject: OxyContin for RLS?
I've had RLS for many years and been prescribed many medications. Some of them (Klonopin and Sinemet) have worked but only for a short time. Mt doctor says I have a bad case of RLS that I inherited from my grandfather. After years of pain and suffering my doctor gave me a prescription that has been working for sometime now and I am very very pleased with the results. The prescription is for OxyContin 20 MG. It is very close to morphine from what I hear from my pharmacist and is closely guarded by the DEA.
Even though it can sometimes be a pain in the butt to get, the results are fantastic. I have very few side effects and the ones I get are not bad at all. I can wake up in the middle of the night and go back to sleep without having to take more medication. I can also work during the day, drive, and also nap in between and all I have to do is take one pill a day. Sometimes I can take a day off from the pill. I highly recommend this drug to all my RLS brothers and sisters.
OxyContin is oxycodone, which is similar to Vicodin or Lortabs, but at 20 mg, rather than the 5-10 mg dose that the others come in. It can be very addicting, which means that you also get tolerant to it, so that you need higher and higher doses until it is barely effective.
You can take regular drug holidays which may help and only use as much as you need to relieve symptoms. Mirapex or Requip work better than Sinemet, and may eliminate the need for the narcotics.
Sent: Sunday, April 09, 2000 10:19 PM
Subject: RLS and pregnancy
Well, like most of your readers, I discovered this site at 3:00am while standing in front of my computer looking for something else to do on my feet while watching late night TV (there is some weird stuff on there!)
I've had RLS for brief periods only since I was a kid. Since I got pregnant 6 months ago it has gotten pretty bad - although I see from the letters that I'm not so bad as many. I thought that I was going crazy when I would go for days and weeks at a time with only 1-2 hours or sleep (or none) per night. It is a terrible feeling to be awake all night and then watch the sun come up.
I've been trying to explain to my husband and my friends that it is like "one long, endless day". I never thought before about how much we need sleep at night as a mental break from one day to the next. Now I get no respite, and my life is like one long, endless day with a brief nap here and there.
I've tried a homeopathic remedy, acupuncture, holographic repatterning, herbs, Benadryl, vitamin B12 and iron (I was diagnosed as anemic), baths, hot pads, yoga.... But I would trade it all for a Valium in one second if I wasn't pregnant. So, no new info to impart. I'm just relieved that I'm not the only one, and terrified that it won't go away when my pregnancy ends.
Thanks for having this site!
Jenna in Baltimore
Stay away from antihistamines (such as Benadryl) as they usually make the RLS a lot worse. Check out our lists of drugs to use in pregnancy (on our RLS Treatment Page) and discuss it with your obstetrician. As you have likely already read on our site, RLS very often gets worse with pregnancy.
Sent: Monday, April 10, 2000 7:24 AM
Subject: Yep, I've got it!
So, this is what you call it, RLS? Great! Not only do I kick my legs in bed at night, but I bounce them up and down during the day when I am forced to sit. The nightly kicking drives my husband nuts (me too, when it wakes me up). It seems worse and wakes me up the most in the days prior to getting my period. I also clench my jaw when I sleep and also notice myself doing it at times during the day. I wondered if there was a vitamin/mineral therapy that may work.
I think I have done this night kicking since childhood, as I remember my siblings telling me to quit kicking the bed (I had the top bunk) and my saying, "I can't help it!" My husband wonders how I can sleep in so late in the morning--well, I am tired! I just thought I required more sleep than he does, but now I wonder if it is because the RLS keeps me from getting quality sleep. Hmm, interesting.
Elizabeth A. J.,
Eaton Rapids, MI
You do not have RLS, but rather PLMD (Periodic Limb Movement Disorder) which is your leg kicking problem. Most (85% or more) of the RLS patients have PLMD, but PLMD can also occur alone, as it seems to have done in your case.
If you are sleepy in the daytime, then the PLM's are likely causing arousals and significant sleep disturbance (most of which you will not be aware of). You should have a sleep study and will likely need treatment of your condition. Generally, a combination of Mirapex and Ambien work very well.
A Reply from Elizabeth A. J.
Sent: Tuesday, April 11, 2000 5:45 AM
Subject: Re: Yep, I've got it!
Thank you for your response. So, the muscle twitches that feel like small little bursts of energy in my legs and make me want to jump out of bed and go jogging aren't RLS? The leg kicking isn't totally involuntary, either. I can control it in public--but when nobody is watching--I feel less stress if I bounce my leg up and down.
What exactly is the difference between the two different disorders? I hate the thought of taking more drugs--I already take Prozac for depression. However, the leg thing was not caused by the Prozac, since I had the symptoms prior to being on any drug.
Thank you again for your help,
Elizabeth A. J.
RLS is a discomfort in the legs (more like a very unpleasant sensation, such as ants crawling up the inside of your leg) and is not muscle twitches. The muscle twitches sound like PLM's which may result in involuntary leg kicks. If you get separate unpleasant sensations in your legs that are relieved by voluntarily moving your legs (and strongly associated with the urge to move your legs, especially when at rest), then you may have RLS in addition to PLMD.
If you have RLS, then Mirapex is even more indicated to treat your condition.
Sent: Tuesday, April 11, 2000 2:09 PM
Subject: Homeopathic treatment for RLS?
I am 33 years old and have had RLS for about 6 years. My sister had it mildly during her pregnancy, but that's about it for my family. I get this in spurts. One to two weeks and a couple weeks of relief. Aspirin did not help. Kicking only helps for about 10 seconds. Walking around on a very cold floor seemed to help. Massaging (very hard) my calf muscles seemed to help only for about 3-4 minutes. Cutting way down on caffeine did not help me, nor did eating bananas (recommended).
I have tried to not kick to relieve my calves and if I hold out long enough, my thigh muscles will visibly twitch. I have been so starved for sleep, I decided chopping off my legs below the knee may not be so bad (joke). The stretching does work, along with soaking my feet in VERY cold water while digging into my calves. I cannot take most meds and currently have a homeopathic doctor. Since this is not EVERY night, it's difficult to observe.
I have been traveling on a plane a lot lately and it never fails- I have to stomp for relief. Too bad they don't have a kicking and non-kicking section on the flight. Please help me if you can with any non medication idea. I don't care why I have it or where I got it. I just need some relief.
Check our web site again, on our RLS Treatment Page, in the non-medication treatment section. Most of these treatments do not work very well for most RLS sufferers (some individuals will notice great success, however). Since this occurs only sporadically, Ambien at bedtime as necessary should help you sleep and a medication such as Ultram may help you for travelling. It is nice to not have to use medications, but unfortunately, RLS can be quite severe and most often does not respond to homeopathic remedies.
Sent: Wednesday, April 12, 2000 5:28 AM
I have had RLS for about 35 years or so but only had it diagnosed a couple of years ago. I didn't have a good nights sleep for all those years and spent the nights wandering the house and raiding the fridge.Or just sitting on the edge of the bed. I tried everything under the sun. Sleeping tabs, anti-depressants made it much worse. Alternative medicine homeopathy herbal remedies acupuncture hypnosis. Nothing worked.
Sinemet worked like magic! On the first night I took a half tab of the very lowest dose and slept better than for years. Now I am on a much greater dose, half a tab100/25 taken 1 hour after evening meal, and one and a half tabs of Sinemet CR before bed. I sleep till 4 a.m., then I take another half 100/25 takes me till about 7.30 am. I get augmentation in the late afternoon. Occasionally I awaken with a bad cramp in my calf muscle. I want to go on holiday but don't know how to cope on a long plane trip and coach travel.
Any input would be appreciated. Please feel free to email me direct, if you have any
advice. Hope someone can help,
The augmentation and rebound problems with Sinemet are well known and you seem to be quite aware of it also. The solution is very simple, just have your doctor change you to Mirapex or Requip. It should work better than Sinemet without the augmentation and rebound problems.
If you need some extra help for a plane trip, then one Ultram tablet may do the trick, if the Mirapex (taken 30 minutes before the flight) does not completely relieve your RLS symptoms.
Sent: Wednesday, April 12, 2000 7:11 AM
Subject: sleep medication (see previous letter above, April 7, 2000)
Thank you for your reply regarding RLS. Yes, I certainly do have a history of insomnia though I have never wanted to honor it with a name. Please tell me how I convince my doctor that Ambien is not addicting? Right now he has prescribed new help for me with trazadone , 50 mg . I am to take 1/2 pill at bedtime. It seems to be effective for about 4-5 hours. Today I woke up at 3:30 a.m.
The only other help he has given me over the years is carefully rationed Valium, 2 mg . That too loses its effectiveness after 3-4 hours. Since he is so stingy with the Valium/diazepam , taking two a night is out of the question . I'm retired, so how I function the next day is not always important, but I would be so thankful for even 6-7 hours of oblivion sometimes.
Most general doctors feel confident prescribing trazadone for sleep instead of the newer, better non-benzodiazepine medications. The latest supplement in the journal SLEEP is devoted to insomnia and its treatment. If you can get your doctor to read this small supplement, it should guide him in the right direction.
It is still very hard to get most general doctors to change their prescribing habits. They have little time to read the incredible amount of medical literature that comes out on all topics, so it may be very difficult to get him to spend the time on this area.
Valium is not a very good sleep drug as it has a long half life and may cause daytime problems. Valium at 2 mg is also a borderline effective treatment for sleep problems. Ambien and Sonata are much more effective and much safer! I hope you get the help you need. If not, you should demand a referral to a sleep specialist.
Sent: Wednesday, April 12, 2000 12:03 PM
Subject: RLS not doing well.
Hello, I am a 44 year old female diagnosed with RLS in 1992. I started out with Sinemet and then developed augmentation. I tried Neurontin with no luck. I now have been taking 3 Mirapex .125mg tablets, 3 clonazepam 1 mg tablets and 2 Tylenol PM's for pain tablets at bedtime every night for over two years.
My concerns are:
1) Taking clonazepam with no "drug holiday" mentioned by my physician.
2) RLS symptoms at night are severe calf muscle pain, and "shin split" type pain. I then take 4 buffered aspirin, which usually helps with a lot of hard massaging.
3) I feel sleep deprived most of the time.
On Saturdays and Sundays, I love to take a nap on the couch for 2-3 hours in the afternoon without any medication. It is the deepest and best sleep I ever get. Of course, I sometimes have difficulty sleeping in the evening after my naps.I would appreciate any comments, since I usually have to suggest prescriptions from your web site, since my doctor has only 10 RLS patients. He is a neurologist and has access to doctors at the sleep clinics in Minnesota.
Diane L. St. Paul, MN
There are several things which may help you. Do not take the Tylenol PM, as this variety of Tylenol has an antihistamine in it, which makes RLS worse. You are on clonazepam at 3 mg, which is a very high dose. Taken on a regular basis, this leaves high levels of the drug in your system even in the daytime, thus adding to your daytime sleepiness (not a good thing). Changing to Ambien would be a much better idea.
Your dose of Mirapex may work better at a higher dose. Most RLS patients need between 2-6 of the .125 mg tablets per day. Mirapex can be increased by one tablet every 5-7 days until you hit the correct dose.
For additional pain/RLS, not relieved by the above regimen, Ultram would be a good choice on an as needed basis only.
A Reply from Diane L.
Sent: Monday, April 17, 2000 9:00 AM
Subject: RLS not doing well
I have quit the Tylenol PM and had a hard time sleeping for two-three days; however, things are better now. I tried adding another tablet of Mirapex for two days, but I don't notice any difference in my RLS. I still wake up after 5-6 hours of sleep. I assume this will take a week or so to notice any difference, and I may need to add a sixth tablet.
Do you know if there are any weight gain problems associated with these drugs? How do I go about changing from clonazepam to Ambien? Gradually?, and if so, how? Of course, I need to get the prescription for Ambien first.
Thanks again for all your help,
Weight gain is usually not a problem with Mirapex. Clonazepam can be stopped suddenly as it is so long lasting and has active metabolites that stay in your system for several days. It thus tapers itself out of your body. It may still be better to cut down slowly (in your case, by .5 mg every few days). Ambien can be started on an as needed basis as soon as you need it, but due to its short half life (about 2.5 hours), it may not keep you asleep more than 5-6 hours. Xanax may be a better choice if you absolutely need 6-7 hours, but only trial and error will tell what works best for you.
Sent: Wednesday, April 12, 2000 3:14 PM Subject: Is Methadone Safe?
My 28 year old Down's Syndrome son has nighttime RLS that tapers off after dawn. Ambien 10 mg works only if given at dawn whereas temazepam 30 mg always puts him to sleep within an hour. His neurologist prescribed Klonopin 1 mg which never took less than 3 hours to put him to sleep and always left him groggy the next day. She said the next drug to try on her list for RLS is Methadone which she said she has had good luck with and almost no side effects with her RLS patients.
I was leery, my wife said no way, and my son's psychiatrist said Methadone was begging for trouble. The neurologist said she was reluctant to prescribe Mirapex because she had seen it lead to daytime RLS problems but at my insisting prescribed it anyway. Mirapex .25mg did not stop my son's RLS but it did aggravate his lifelong constipation problem so I had to stop giving it to him. My question is "What is your view of Methadone for RLS, what dosage, at what risk, and what medication would be your next choice after Mirapex given my son's constipation problem?"
Thank you and you have a terrific website, especially the letters and responses,
Treating RLS can often be difficult as about 15-20% of patients do not respond to the major drugs as well as the majority of RLS sufferers. Side effects can be unpredictable also. Even though Mirapex did not work, a short trial of Requip (its close cousin) is likely warranted. If constipation occurs and it is not effective, then forget about this class of drug. Your doctor is confusing the rebound and augmentation that occurs with Sinemet (which would cause daytime RLS symptoms) with Mirapex, which rarely causes this problem.
The temazepam is a reasonable drug if it works well. Others to try in this class would be Xanax. The newer medication, Sonata is also worth a try. Klonopin should almost never be used for RLS due to its very high rate of daytime sleepiness.
The pain killer medications work very well (on an as needed basis only!) for RLS. They should always be started with the least potent ones (Darvon) and only increase to the more potent ones (codeine, oxycodone, hydrocodone) or most potent ones (morphine, methadone, etc.) only if absolutely necessary. The more potent the medication, the better the chance that addiction/tolerance may occur. Ultram (tramadol, a synthetic non-narcotic pain killer) can also be used with even less (if any) addiction potential.
Another drug to try if the Parkinson's disease medications do not help is Neurontin. As you can see there are lots of alternatives and drugs should be added very carefully.
Sent: Wednesday, April 12, 2000 10:13 PM
Subject: PLMD and Requip
I started with .25 mg Requip at bed time for my PLMD problem. It stopped working after a few days. So I increased dose to O.50 mg at bed time. It works sometime and doesn't work half the time. Should I increase my dose further? Note that I don't have any RLS problem anytime. How much the dose of Requip can be increased for PLMD problem only? Or should I try Mirapex?
Recently, the food allergy test (Elisa Units test) showed that I was allergic to many foods, including garlic, Egg white, cottage cheese and cow milk. Is it possible that food allergy can create PLMD? I have not seen that many people complaining about headache in the morning because of disturbed sleep due to RLS or PLMD. If food allergy causes headache, then I should get headache even during daytime after eating that food. I suspect food allergy may be causing PLMD during sleep, disturbing my sleep and that in turn causes headache when I wake up in morning. In such cases I would also feel sleepy during daytime.
But PLMD can happen even when I don't eat allergic food. I am avoiding the allergic food. I have observed that if I eat allergic food, PLM will be worse, as indicated by more severe headache in morning. My Chiropractor says that my autonomous nervous system is too alert and that may be cause of PLMD. Any comments?
May be mine is unique case. I will appreciate any suggestion. Thank you,
It is somewhat more difficult to titrate the medication for PLMD than for RLS as you must use indirect responses (like feeling well the next day) which can be affected by factors other than PLMD. Morning headaches are actually a common problem with people who have interrupted sleep (PLMD, sleep apnea), so it is likely that this may be caused by your PLMD problem.
Whether your food allergy has anything to do with morning headaches or PLMD may be very difficult to sort out. This is a very nebulous field, and even blood testing for food allergy does not always correlate with active allergy problems.
As far as your chiropractor's conjecture about your autonomous nervous system is too alert and that may be cause of your PLMD, this has no basis in fact, as far as I know (little is known about the real cause of RLS). It sounds like general chiropractic thinking and has no support in the medical literature.
My best advice would be to increase to 3 or 4 Requip .25 mg tablets (increase by one tablet every week with the approval of your own doctor) and see how you feel in the morning. The only way to be sure otherwise, would be to have a repeat sleep study on the Requip. Mirapex is quite similar, and only trial and error can tell you which is better.
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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