If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Saturday, April 15, 2000 7:30 PM
Subject: Half Life of Mirapex
I'm sure this has been mentioned before, but I couldn't find it. What is the half life of Mirapex for the dosage of .125? Also, if you take Mirapex (or any of the other RLS meds) on a full stomach, does it take longer for it to work and is it less effective? I've noticed when I've over-eaten and then take my normal doses of medication, that the results are not very good.
Thanks in advance and thanks for the great website,
Pramipexole (Mirapex) is rapidly absorbed, reaching peak concentrations in approximately 2 hours. The absolute bioavailability of pramipexole is greater than 90%, indicating that it is well absorbed and undergoes little presystemic metabolism. Food does not affect the extent of pramipexole absorption, although the time of maximum plasma concentration (T max ) is increased by about 1 hour when the drug is taken with a meal.
Mirapex's half-life is about 8 hours in young healthy volunteers and about 12 hours in elderly volunteers. When used for RLS, it seems to last between 3-8 hours, depending on the individual.
Sent: Tuesday, April 18, 2000 6:34 AM
Subject: RLS and Calcium
I have had RLS all my life but I am one of the lucky few that gets relief from Calcium/Magnesium/Zinc supplements. It takes 1000 mg of calcium and 500 mg of magnesium to quiet the restless legs and get a good nights sleep. It has worked better than any sleeping medication or pain medication that I have tried over the years. One side effect is vivid dreams but that is fine with me, like going to the movies at night.
My mother has RLS and yet calcium does not relieve her symptoms at all . She now has major problems with burning in her feet along with the RLS and I am wondering if the burning is a common addition to the RLS? All the doctors she has seen has said its in her head...blah, blah,blah. Mom had back surgery 8 years ago and has been using pain medication for the burning/RLS since the doctors will give her pain medication for her back but nothing for her RLS/burning.. She has been taking different pain medications, mainly from the opiate family and yet still does not have relief. Is there a medication that perhaps she can try that can help the burning?
Thank you for a great site!!
Mirapex or Requip are the best choices for the RLS discomfort. Most people get relief with these medications.
Sent: Tuesday, April 18, 2000 7:20 AM
Subject: RLS and Cold Knees
Your WEB site is wonderful, thank you! I now have another question for you. I have suffered with RLS since I was twenty-six, I am now fifty-six. For the past few years, I have tried various medications with Mirapex finally the one that allowed me to sleep at night. I have been using.0125 mg Mirapex three times a day for about the past two years. In the past month, I have had problems sleeping again because of a sensation in my knees that the best way I can describe it is as though an ice cold pipe was running through my knees. I can't get my knees warm regardless of what I do.
When I do fall asleep, I am very restless and I dream that my legs and especially my knees are cold. A couple of times in the past month, I have had the horrible RLS sensations that I had before I found Mirapex. The only relief I can get from either the cold knees or RLS is getting up and walking up and down stairs. Do you have any suggestions for this new problem? Do you think I am building up a tolerance to Mirapex?
It is possible to build up a tolerance to Mirapex, but that happens only in a minority of patients. It could be that your RLS is slowly getting worse, as it tends to do after age 50. Increase your Mirapex slowly and see if that does the trick (under the supervision of your personal doctor). If it seems that you are getting tolerant to Mirapex, switch to Permax for a few months, as there is no cross tolerance.
Sent: Tuesday, April 18, 2000 9:11 AM
Subject: Headaches from Mirapex?
I am presently taking a .125 mg tablet of Mirapex at 7 P.M. and another at 11 P.M. They have definitely helped with the restless legs but I have been getting very bad headaches. I was thinking of going on Requip instead to avoid the headaches and would appreciate your wonderful advice.
Although Requip and Mirapex may work as well for RLS, they may indeed have a different side effect profile, so it is worth a trial of Requip to see if the headaches go away (while taking care of your RLS).
Sent: Tuesday, April 18, 2000 1:43 PM
Subject: My experience with cyclic RLS
I want to describe my experience with RLS. I've noticed that I've had the experience for more than 5 years now. I am at the age of 38. I noticed that I started having these episodes around menstruation time. I've plotted the cycle of RLS to occur once every three months. Sometimes when it strikes, it will be closer to morning (which is great!). There are times, however, that it will strike when I lay down to go to sleep. My description of it is like oxygen being cut off from my leg (usually the left leg). It feels as though my leg cannot breathe, therefore, I feel the need to get up and stand, walk, do deep knee bends all night. It can be described like a torture chamber obstructing me from falling asleep.
When I finally tire myself out from standing and moving about, I try to lay down only to be awaken by the jolt (or lack of oxygen in my legs again). It's very much like torture whereas you feel you should be sleeping, but the only relief that you can get is to stand like a horse to fall asleep. Sitting is out of the question! If it were that easy, I could fall asleep sitting. But it's not.
I've checked with medical doctor, and they really don't seem to understand what I'm going through. Oh, yes, they are sympathetic, but really do not know how to diagnose the problem. The sleep disorder center recognized my problem and wanted to do a study, but since I only experience RLS once every three months, and really don't know which day that it will occur, the study was out of the question.
I've just recently laid off caffeine. I can post my findings to see if that helps.
There is no need for a sleep study. RLS is diagnosed only by its clinical symptoms. For your intermittent symptoms, a sleeping pill (Ambien, Xanax) would be helpful or possibly a pain medication (codeine, Ultram, etc.).
Some people have RLS in cyclic patterns, but this is not very well (if at all) understood.
Sent: Tuesday, April 18, 2000 7:22 PM
I have just come across this web site by accident or need. It is late and my husband has just kicked me out of bed again. I live in Utah and have not found a Doctor who really believes in this syndrome. As a child I remember these nights as being attributed growing pains. As an adult remember my Maternal Grandmother and Mother saying that I have the curse. This became more significant during pregnancy and now that I have had a hysterectomy I am experiencing the restless legs almost every night.
I have lost my job because of excessive absences, and now my Doctor feels I am depressed. I still believe my problem stems from inadequate sleep at night and poor performance the next day. I have been on clonazepam for several years, and have noticed it doesn't seem to be working anymore. I tried Permax but found I was nauseated and had insomnia and the restless too. Help I feel this is hereditary and would like to find a competent Physician.
Clonazepam seems to lose its effectiveness in RLS if taken regularly without drug holidays. It can actually add to the depression caused by RLS.
Mirapex or Requip work better than Permax and should take care of most of your RLS complaints. Changing to a shorter acting sedative (Ambien, Xanax) at bedtime should work much better.
Any residual RLS complaints should be taken care of by as needed pain killers (codeine, Vicodin, Ultram, etc.).
Sent: Saturday, April 22, 2000 7:28 PM
Subject: Questions about Requip.
I just increased my dose of Requip to 1.25 mg. because I was becoming tolerant at lower levels. Can one go back and forth between Requip and Mirapex to avoid tolerance? How do you actually do it since both of them require that the dose be started low and increased gradually? Have you found a preference in RLS sufferers to either Requip or Mirapex? I find that Requip only helps me about 80% and that it is hard to take for afternoon and early evening symptoms because it makes me nauseous and sleepy.
It is not known whether or not there is any cross tolerance between Mirapex and Requip. There has been one study that demonstrated no cross tolerance between Mirapex and Permax. I have seen a few patients respond to either Mirapex or Requip, after not responding to the other one. It is thought that Mirapex and Requip are much more similar to each other than to Permax. They are all dopamine agonists, but Mirapex and Requip bind to the D (Dopamine)1, D2, and D3 receptors, while Permax binds only to the D1 receptors.
It is possible to go back and forth between Mirapex and Permax (generally every few months) to avoid tolerance (or once tolerance is noted). I have found that you can replace a moderate dose of one dopamine agonist with an equivalent dose of the other without a lot of problems with side effects. This could be due to the body already being used to a higher dose of dopamine agonist already in its system (this is not well understood, and is actually just my own theory).
The side effect profile of Mirapex and Requip can be somewhat different (despite their many similarities), so if you do get sleepy and nauseated with Requip, you might do better with Mirapex. I have not yet found a preference for Mirapex or Requip amongst RLS sufferers. We have a lot more experience with Mirapex (as it came out before Requip), so it is difficult to say which generally works better.
Sent: Saturday, April 22, 2000 11:29 PM
Subject: Is foot anxiety/claustrophobia RLS?
I am 33 years old and I think RLS sounds like what I have had for at least 12 years. Although mine is in my feet. Could this be the same as RLS? Mine feels very similar to what I have read about RLS. My best description of it is foot anxiety or claustrophobia of the foot. Generally I only have it in one foot, mostly at night but sometimes if I am confined to a room such as when I am at the movies or a play.
I have found that taking off my shoes and socks helps. If my husband puts his leg on mine it causes it to start up. Let me know if this could be RLS?
Redondo Beach, CA
It is often very hard for RLS patients to describe their limb discomfort. Pain is generally not correct, and descriptions such as yours are quite common. It sounds as if you do have RLS. If you feel as if you must move your feet when this strange feeling occurs and movement relieves the symptoms, then you definitely have RLS.
Sent: Wednesday, April 26, 2000 9:16 AM
Subject: Tonic Water & Quinine
Years ago I took quinine tablets to help prevent my RLS but the tablets were taken off the market as being dangerous to one's health.
Now I read on your site two references to quinine/tonic water, and it jogged my brain: aren't they one and the same? Interesting.
Whoops, on further reading of your site, I see where you are discouraging people from taking quinine for RLS. To un-muddy the issue, I have definite RLS rather than leg or muscle cramps. And yes, quinine helped me.
What is so wrong with taking quinine?
Thanks for the best RLS site anywhere,
Quinine does seem to help a small percentage of RLS patients (I may have to change my RLS Treatment page, as I have seen some RLS patients who benefit from this drug). The problem is that it does not help the majority (at least 95%) and is often used as the drug of first choice by most primary care doctors when treating RLS.
Some tonic waters (you have to check their labels) do contain significant amounts of quinine to treat cramps and RLS, so it would be worth a try. You can also get your doctor to give you a prescription.
Sent: Thursday, April 27, 2000 5:29 PM
Subject: MRI, Magnetism and RLS
Hello, again. This afternoon, I participated, as a patient volunteer, in an RLS study at the National Institutes of Health in Bethesda. The study included an, "MRI," (Magnetic Resonance Imaging) to evaluate the iron levels in the basal ganglia of my brain. Because I had been told that the MRI required that I lie still for about an hour, I feared the worst. I took two 50 mg. Ultram tablets at around 11:00 a.m. The MRI was delayed, and did not commence until about 3:00 p.m. By then, I already had begun to experience some discomfort.
The doctor advised me that the MRI would be performed in five minute segments, and that I would be allowed to flex between segments. No sooner had the MRI began, then did my discomfort evaporate. I felt no need to move, and ignored the license to move after each segment. I lay motionless for the entire hour, and left the procedure feeling more rested than I had felt in years. I mentioned this to one of the doctors, and he was surprised at my experience. The relief lasted for about an hour after the MRI. I wonder? Perhaps a coincidence. However, inasmuch as RLS may be due to an iron storage deficiency, and the MRI attracts the iron in the body, is there any reasonable likelihood that the MRI (magnetism) has a beneficial effect upon RLS? Perhaps others have had similar experiences.
On an unrelated point: Because I had become somewhat tolerant to Mirapex, my neurologist prescribed Requip as an alternative. Ouch! It took just one 0.25 tablet of Requip in lieu of Mirapex to convince me that Requip was not for me. Not only did Requip not bring relief, but it resulted in rebound and augmentation reminiscent of my experience with Sinemet. Despite their limitations, I find that a combination of Ultram (two 50 mg. tablets as needed) and Mirapex (two 0.25 mg. tablets each evening) to be the best of the lot.
Thanks for listening,
Iron has been implicated as being a cause of RLS by studies that have noted a higher incidence in anemic patients. It is thought that iron is necessary in the metabolism of dopamine and that is the way it has a role in RLS. External magnets cannot affect the form of iron that is in the body (unless you are talking about a sliver of iron that may have worked its way under your skin) which are chemically combined iron compounds which have no magnetic properties. Whether or not magnets can otherwise affect the nerves or muscles and thus help RLS is anyone's guess.
Requip is generally similar to Mirapex, but as you have already noted, in given RLS patients, the response to RLS medications can be quite varied. Permax has been demonstrated to work well after tolerance has occurred to Mirapex.
Sent: Thursday, April 27, 2000 4:32 PM
Subject: Restless Leg!!!!
I am about ready to loose it . I am a life time sufferer of restless leg syndrome. I broke my pelvis in Feb. and was bed bound for 2 months. I am up and about everyday, but I still have RLS. I am taking Prozac which I understand exacerbates the RLS, but I need this for depression. I fall to sleep in the evening and wake up about 12:30 AM with what I call "the worms ". I am up for 2-3 hours after that. I have consulted my primary physician and of course you are left to feel if you need Prozac in the first place you must be crazy.In the past I would get RLS in the legs if I did not fall asleep right away.....now I get RLS in my legs, arms and back.
I am unable to get a degree of quality sleep. I am returning to work after my pelvis fracture on June1.
Sleepless in New Jersey
You should have your doctor prescribe Mirapex or Requip. These medications usually work very well and hopefully will resolve your problem.
Sent: Thursday, April 27, 2000 2:49 PM
Subject: IN MISERY WITH NOCTURNAL MYOCLONUS
I'm a 35 year old, divorced, female, mother of two. I was diagnosed with Nocturnal Myoclonus (Restless Leg Syndrome/Periodic Limb Movement Disorder) in Dec. 1997. The sleep study revealed approximately 190 jerks with 150 sleep awakenings over an approx.. five (5) hour period with me remembering only two (2) awakenings. The achy, leg jerking, can't sit still, symptoms were experienced since early childhood. As a child, I would wedge my foot between my mattress and foot board to rock or bounce myself to sleep. I was famous for falling out of the bed. From a toddler to present day, my favorite chair when sitting is a rocking chair. (I still have my first little rocker, now in my son's room).
Prior to treatment, I spent a lot of years being absolutely "miserable," habitually late, etc... I have never had a good sense of "time." More of a "night man in a day man's world." After my diagnosis, my mother revealed, she suffered with the condition as well as her father. Old folks called it "The Misery." Her condition was not a problem for her as she took various anti-depressants, anti-anxiety, and sleep medications for chronic depression. I was not aware that for many years, my Grandmother made a pallet each night on the floor beside the bed for when my Grandfather would jerk and fall out of it.
Past drug trials with combinations of L-dopa/Carbidopa and Sinemet resulted in what I call "Lead Legs." My gait was affected and mobility was deteriorating rapidly. In walking, I was forced to move forward "from the waist." Rapid weight gain of 4-6 pounds "a week" was experienced with this drug. A wheelchair was on the horizon and fast. Ulcerated stomach and gastro-intestinal problems developed. I had no relief with this medication in sleep nor reducing the "jerks." Drug combination and dosage adjustments made no improvement to the deteriorating condition. All weight gain stopped and full mobility returned upon discontinuing the drug.
QUESTION(S): Has anyone experienced such with this kind of medication? Were my symptoms considered "normal" for most people to accept with this condition? As my condition is worsening, I am afraid to try any other "Parkinson's" type medications which appear to be the drugs of choice.
I have a high pain tolerance and generally don't have good results in using strong Narcotics. I am allergic to Demerol. My doctor and I did not do drug trials with this class of medication.
QUESTIONS: Do these medications successfully stop the jerks?; or, Are they used strictly for sleep induction?
I generally experience adverse "turn on/off" effects in mood and sleep using Benzodiazepines. But through trials, my doctor settled on 0.5 mg. Lorazepam 1 to 2 tablets before bedtime, increasing to 3 tablets as needed. This medication had the least adverse effects, but does have the 2-3 hour hangover effect in the morning.
I use the standard "sleep hygiene" methods (No caffeine, sleep times, etc...). The arm/leg jerks and twitches are continuing when I am at any still or rested state. My sleep is continually disrupted and I am staring at the clock at least hourly every night. I finally experience a "sleep" period starting around 3:30 a.m. and then have to get up at 5:30 a.m. I can't get my body or brain to shutdown at night. I am consciously aware of any thoughts that I may have, like I am totally awake and thinking all night long. My sleep deprivation is increasing. I know my deprivation is high when I find I am increasingly reaching for something to eat or drink to keep me pumped up and awake as well as my loss of concentration, word jumbling speech, hand trembling, eye twitching, arm/leg jerking, etc... during waking hours. My adverse symptoms of sleeplessness increase when under high periods of stress. Being frustrated over not sleeping can start a vicious cycle. I work during the day and avoid "Naps" because when I wake up, I find myself in a very tired, angry, foul mood, worse than I was before being just tired. On the weekends, I'm finding I am uncontrollably nodding off and spending far too much time in the bed in the morning trying to reclaim sleep.
QUESTIONS: Do other sufferers experience this type of dysfunctional sleep? Does anyone experience "awakeness" when your supposed to be "sleep?" How do others reduce the sleep deficit periods that seem to build up? Any non-nap methods out there? Is there any real sleep anymore? ? ? ?
I suffer allergies, and dread getting an upper respiratory illness. The allergy medications interact severely with the Lorazepam and send me for a loop! I lay in bed feeling like someone is "turning me on and off like a light switch" awake 15 minutes, asleep 10, awake 20, sleep 5, etc... watch the clock, watch the clock, on and off, and on and off.
QUESTIONS: Are there any allergy relief medications that do not interfere with the standard drugs of choice used with this condition? Are there any preferred treatments/methods for allergies with this conditions?
I feel like this condition is stealing my life, my energy, my active life style. I'm a type A being trapped in a type B body! I keep fighting, but real relief just won't come. I'm tired of falling asleep in my oatmeal at the breakfast table. Any advice or assistance that can be offered would be greatly appreciated.
Sinemet is quite different from the other Parkinson's Disease medications as it is a pre-drug, rather than an active drug such as Mirapex or Requip. Although I cannot guarantee that you will not have side effects with the newer medications, the chances that you will tolerate them and that they will be effective is greater. It is difficult to say whether or not your RLS is getting worse or just that you are having exaggerated symptoms in part due to the trial of Sinemet.
Narcotics do not affect PLMD very much. They are mainly used to relieve the discomfort from RLS.
Many RLS patients get you type of insomnia such as you have described. RLS gets worse in the evening (thus keeping you awake) then gets better in the morning (generally about 6 a.m.). Many RLS patients will get jobs that permit them to sleep from 6-11 a.m.
Anti-allergy medications are generally antihistamines which is one of the commonest class of medications that worsen RLS. That is what you are probably what you are noticing, rather than an interaction with your sleeping medication. The best solution is to use prescription nasal sprays which have anti-allergy properties without affecting the rest of your body.
Have your doctor give you a trial of Mirapex or Requip. It is worth taking a chance on these newer Parkinson's disease drugs.
Sent: Thursday, April 27, 2000 11:22 PM
Subject: Klonopin Withdrawal
Here's an interesting question for you. You have pointed out to me that, if a patient has only a mild case of RLS or PLMD, and especially if it does not bother him or her every day, you would not ordinarily prescribe Mirapex as a starting medication. Instead you would recommend Ambien or Xanax or perhaps Ultram on an as needed basis and using drug holidays if indicated.
You would not recommend Klonopin because is has strong addictive properties. But there are some people who have been taking Klonopin for mild cases, particularly if bothered only at night, and have been taking it for years without apparent problems.
I know of one such case where the daily dose is taken at bedtime and I have guessed that the half-life of Klonopin may be such that it is fully depleted before the next dose is taken 24 hrs. later. And that therefore addiction will not be a problem. But the surprising thing to me is that tests are reported to show that there is a remaining level even then (as I write this it occurs to me that this identification could be misleading since the test was probably done during the day -- when the drug was in fact not depleted).
What is your reaction? If the drug does wear off each day before the next dose is taken, is there any real reason to go through the tapering off exercise? Is it really that bad a situation for those already using Klonopin?
Newt in Oregon
Remember, that for every generalization, there will be many anecdotal exceptions. Klonopin will cause daytime sleepiness in about 85% of RLS patients who take it at bedtime. We have no idea why the other 15% do not seem to have any problems daytime somnolence with the drug. In addition to a long half-life, it has several active metabolites that can also make you sleepy. Most (but obviously not all) people are sensitive to the long half-life and active metabolites and do not do well with this drug.
What I have just said is also true for addiction to Klonopin. We have no idea why some people can take it every night and not develop tolerance/addiction, while others get into trouble within months. Once tolerance/addition occurs, the patients are quite miserable. They cannot do without the drug, but taking it, even in higher doses does not help.
Ambien does not have the same problems as noted above which is why I recommend it so often. Since there is no way to figure out who are the 15% of people who would be right for Klonopin, it is much better to play the odds and prescribe Ambien.
Sent: Thursday, April 27, 2000 11:22 PM
In monitoring your Patient Letters, and that of the RLS Support web site, I am noticing the occasional comment that Mirapex has lost its effectiveness. I have been wondering the same thing because, although Mirapex is the best thing I have yet taken, I seem to have more instances when my PLMD acts up -- always while sitting or lying around, lately even if I am working at the computer and therefore concentrating. That rarely happened in the past. Since I am only taking 0.5 mg at say 4pm and topping that with 0.25 as I go to bed, I realize that I could take more before reaching the potentially dangerous level of 1.5 mg (the sleep attack factor).
A better solution might be to switch over to Permax for a period, to see if that helps, and switch back to Mirapex when the Permax effectiveness drops off. You have suggested just that on several responses, and you refer to "no cross tolerance." Are you saying that a patient can just drop one and start taking the other with no tapering off needed? If so, what is the dosage relationship? Specifically in my case, if I do not change the pattern of when I take the doses, how much Permax would I start out with each time?
In a related matter, you very recently said that there is nothing detrimental about taking Mirapex with food. I would have asked the same question. What I do find almost certainly is that, if I go out to a restaurant for dinner (say at 7-9 pm) and especially if it is Chinese or Mexican food, I am going to have a bad night. It is almost as though I had not taken any medication at 4pm and at bedtime. Actually this can happen with any type of dinner if I eat too heavily (no alcohol involved, nor caffeinated products). I am getting a feeling that this food factor, one way or another, is one of the most important reason that many patients are dissatisfied with Mirapex.
What do you think? Newt again
You might be getting tolerant to Mirapex, or alternately, your RLS might be getting worse thus requiring more Mirapex. It would be worth changing to Permax to see if it helps. One of the .125 Mirapex tablets is about as effective as one of the .05 mg Permax tablets, so that is how you calculate converting from one to the other. If tolerance to Mirapex is a concern, then a relatively decreased dose of Permax may suffice and have less of chance of causing side effects. .For example; instead of taking 0.5 mg of Mirapex (4 of the .125 mg tablets) at 4 p.m., you could try to substitute Permax .1 to .15 (2 or 3 of the .05 mg tablets) and see if a smaller dose of Permax will do the job.
Food does not affect the extent of pramipexole (Mirapex) absorption, although the time of maximum plasma concentration (T max) is increased by about 1 hour when the drug is taken with a meal. Thus it may seem that it is not kicking in at the right time, but it should be active about an hour or so later.
Sent: Friday, April 28, 2000 2:25 AM
Yesterday a research came to my attention. 21 patients used Amantadine to treat their RLS , 11 reported improvement. I was very surprised. My neurologist gave me amantadine a few years ago, he didn't know much about RLS at that time, and wanted to try another anti Parkinson's medicine, after Sinemet. I got real problems, my feet and lower legs were swollen, so much I couldn't walk, I was afraid my skin would burst.And , even more a problem, I had trouble breathing, shortness of breath.
It wasn't mentioned as a side effect in the Netherlands, but on the net I found that it was a ( in the US) well known problem. I tapered off and in a few weeks I was back to normal. I asked the cyber support group for experiences with Amantadine, and Dr. Levin, at that time a member, and also advisor of the board of the RLS Foundation, wrote me that Amantadine was indeed a Parkinson medicine, but it was contra-indicated for RLS.
On no treatment page on internet at all is Amantadine an option. Please, can you tell me what you know about this treatment/research so I can share it with the cyber group, and with the members of the Dutch RLS Foundation, of which I am secretary of the board. The information I got I will forward to you separately.
Thank you very much in advance, kindest regards,
The mechanism with which amantadine works for Parkinson's disease is not known, but this is what the two current theories are about its role in this disease:
(a) To enhance extracellular concentrations of dopamine by increasing dopamine release
or decreasing reuptake of dopamine into presynaptic neurons;
(b) To stimulate the dopamine receptor itself or drive the post synaptic dopaminergic system to a more dopamine sensitive status.
As it does appear to have a role in dopamine pathways, it certainly could have a role in helping RLS. The contraindication of amantadine for RLS probably came from some bad reactions to the drug when tried by some RLS patients (such as your reaction). I have seen similar very bad reactions of RLS even to the best of the RLS drugs (such as Mirapex), so it is very difficult to conclude from small trials or anecdotal reports how good drugs are for this disease.
It will likely turn out that a certain subset (probably about 1/3 to 1/2) of RLS sufferers will get benefit from amandatine, while the rest will have no benefit or get substantially worse.
Sent: Friday, April 28, 2000 9:41 AM
Subject: Mirapex helps my RLS.
I am sending you an update on my condition. I have previously wrote January 4th & 13th 2000. I went to a different doctor for a second opinion. He agreed I had RLS and gave me Mirapex. He started me out with a very low dose which I have increased a few times. I think it has really worked. My legs hardly ever get achy anymore and when they do its not anything like the pain I had before.
I currently take. .5mg in the morning & night. It was because of your site that made go to a different doctor to get on the Mirapex.
Thanks so much,
It is gratifying to hear that you have done well and that our web site was helpful.
I am not sure why you are taking Mirapex in the morning. Generally RLS gets worse in the evening, so I bedtime (or an additional early evening dose) is what most people need. Even many of the severe RLS sufferers often do not need their medications until the afternoon.
So, unless you have significant morning RLS, you should just take your Mirapex 30-60 minutes before you usually get your symptoms.
Sent: Saturday, April 29, 2000 11:42 PM
Subject: Abnormal sleep cycle and RLS?
I am 56 years old and have had RLS symptoms since about 6 years of age, which has consisted of the usual indescribable itching inside the leg muscles, and an inability to sleep until about 5 am. I was diagnosed with RLS at the Cedars-Sinai sleep lab about 8-9 years ago. I tried carbidopa first for one day, then got augmentation. Sinemet worked for about 2 days, and then I got progressive augmentation for the next 5 days until I gave up on it, I tried it several times afterwards with the same results.
Permax came next, 0.15 mg worked fine, but I had mild nausea and pretty severe nasal congestion. Ultram has been the latest, 100 mg at 6 p.m., and sometimes another 50 mg at midnight: This works fine for the RLS symptoms. However nothing has made a bit of difference in the sleep wake cycle of 6 am to 1130 am being the only time to decent sleep. The rest of the day it isn't possible to go to sleep. Sleeping past noon is possible though. '
The type of sleep I get between 6 a.m. and 11:30 a.m. almost seems like a twilight sleep, meaning something similar to a drugged or anesthetized state, which is very very hard to wake up from. This sleep wake cycle has been unchanging since about 6 years of age, and through all of the various drug therapies. I have tried to both advance the cycle over a 2 week period an hour at a time with no change in the cycle. I have tried it the other way with negative results also. I have tried all of the minerals and vitamins, and had all of the blood work done for ferritin, thyroid, all were within limits.
In short, is there anything out there that you can think of to get the sleep wake cycle into the normal nighttime range?
Your case is somewhat complex, but I may have a few answers for you. Even though you have had trouble with Sinemet and Permax, it is likely that Mirapex or Requip might work better for you. This would help you get off of Ultram, which could then be used on an as needed basis.
There is a chance that you may have PLMD which prevents you from getting proper sleep and Mirapex would work well for that possible problem. If not, you may need another sleep study to make sure that nothing is being missed.
It is however, very likely that you are conditioned to sleep these odd hours as you have been doing so for many years and it may be very difficult to break this conditioning.
Sent: Tuesday, May 02, 2000 9:43 AM
Subject: Herbal help with "Silent Night"
My mother lives in Los Angeles, is 77 years old and apparently has had RLS for some years. I didn't have any idea what RLS was or how it affected her until I spent the Christmas holidays with her. Wow, her legs pounded the floor as she sat/slept? in her easy chair, asking me up in the adjoining room.
I've been researching the web on this for her since I've returned home to Phoenix. There was a letter from a person who found relief from a product called "Silent Night" by Nature's Way, I believe. The main ingredients are Valerian Root, Skull Cap and Hops. I bought some for my mother and it works tremendously well for her. The writer of the letter said that he tried a Valerian Root product by itself and other herbal products for sleep, but he found them ineffective. He went back to Silent Night and he swears by it. So does my mother.
From: Sent: Thursday, May 04, 2000 8:52 AM
Subject: Re: amantadine for RLS
I notice a few people on the treatment pages bring up amantadine. I tried it once because I have chronic pain (doctors guess it's fibromyalgia -- I say myofascial pain syndrome at this point). I know fibromyalgia co-exists highly with RLS/PLMD but my night leg jerking predates the pain, I feel sure. I'm probably genetically predisposed to pain as my mom had flares of severe head/neck/shoulder pain for about 4 years at my age, though I feel my pain was worsened or set off by months of being misdiagnosed and over-treated with antidepressants. (My pain is all over my body now.) My parents also tend to have RLS on old style antihistamines and the like, but no other time. Maybe because they're both on heart medications that stop any other non-drug induced RLS. I did not know until I developed the disorder that they had RLS problems.
At first using amantadine was like oiling the tin man. I felt great. My sense of my body in the space around it improved (proprioception?), my pain level went down, my muscles were much looser, I had more energy, and I felt it was like a miracle. My afternoon and evening RLS symptoms went away and I got to sleep pretty well with .25 mg Xanax and a Soma, which predated the amantadine. I took liquid amantadine so I could titrate easily as I tend to get side effects from a lot of drugs. Now the sad part. I was told the amantadine may wear off and internet research bore that out. I did not get as long a response time from it as most other people say they do. It worked about 5 months if I remember right.
Then it fizzled out and I had no time to taper off, as is recommended. I got worse muscle tightness than I ever had before. My range of motion decreased by at least 75%, which I'm guessing was some kind of dyskinesia, maybe drug related dystonia, though I couldn't find a doctor on my short list of providers to agree and I don't pretend to be a health professional myself. Of course I was very disappointed. I tried the amantadine again later once when the range of motion improved, but it never worked again. I haven't tried it lately and don't feel I should. But you can see from my experience where problems with amantadine can happen with some people. It also made me have weird flopping of my arms in sleep (NOT accompanied by RLS feelings) after using it a few months, which was not like myoclonus which I am very familiar with. It was more like the involuntary movements I used to see in some patients when I was a kid and went to work with my mom when she was a secretary at a large psychiatric hospital.
The involuntary flopping happened way after the day's amantadine dose, which I took in the morning since the amantadine was energizing for me. It took months for me to recover from the loss of range of motion, though the flopping resolved fairly quickly after discontinuing the drug. By the way, that was the very same arm flopping I had happen when a health plan I used to be on insisted on treating me with antidepressants prior to my polysomnogram. Wellbutrin caused the flopping. I have had mild to moderate RLS/PLMD for years, but the SSRI's the plan's doctors prescribed prior to Wellbutrin put me in "serotonin overload" (re: my prior health plan providers themselves) and this state continues to one degree or another to this day.
Any old style antihistamine or antiemetic or any tricyclic or SSRI antidepressant sets it off now. The Wellbutrin suppressed this state for 6 months or so but then made my muscles very tight. When I discontinued the Wellbutrin, I first had muscle tightness and pain flares a week or so out of the month. When I got tired and sleepy in the day again after several months of nighttime Xanax (which fizzled out too despite drug holidays) and Soma, the health plan would only offer me daytime Wellbutrin again, which I accepted from desperation and assurances from a doctor that there probably was no correlation between the pain/tightness and Wellbutrin.
After a couple of months or so of Wellbutrin retrial, again the muscle tightness. When I went off it, I had SEVERE rebound RLS immediately and went into a pain flare that has lasted for well over two years, with no notable remissions. I finally went off all drugs for 4 weeks and got a polysomnogram which showed PLMD and alpha-delta anomaly. I get better results treating the PLMD than I do the other disorder. This has been borne out through several doctors' attempts to treat the A-D anomaly instead, during which some of them worsened the PLMD with tricyclic antidepressants. Of course I do warm water exercises and other things for my pain.
I know my chemistry and my case may be extraordinary, but surely there are other people who could end up in the same boat. I know amantadine is helpful to many people, including MS patients, but it isn't for everybody. I thought you might like to know.
I enjoy your page and check into it often. Right now I have to take a multi-drug approach of Neurontin, Ambien, and Mirapex for the RLS/PLMD, which works pretty well so far.
Thanks for taking the time to read this. Keep up the good work.
Sent: Tuesday, May 09, 2000 8:05 PM
Subject: Permax and domperidone
It has been several months, but am back again as you are the most knowledgeable RLS doctor I know, though my sleep doctor is working hard at it thankfully. I am curious if you are familiar at all with the anti-nausea drug, domperidone, you can get here in Canada. I took Permax for 2 months with never being able to get above .25 mg because of nausea, but was able to get past that when I started with Motilidone, which is the brand name of domperidone that I take.
After several months, I've gotten up to .25 mg Permax which totally controlled the RLS but still left me fatigued most of the time so I'm uncertain about my PLMD. I then run into a month of severe migraines that never went away, so I have recently dropped back to 1/2 of the .25 mg tablet with a slight resurfacing of RLS, but only a minor headache which is normal for me. If I have a really bad day/night, I add in about 1/2 a pill of 25/100 Sinemet.
Having finally developed a semi-tolerance to Permax's side effects (at least at a low dosage), I don't need to constantly take the Motilidone so I was wondering if I can take it at the same time as the Permax (which I take 1 hour before bedtime) if I suspect I'm going to have a problem. This way I could take it as needed rather than all day long. It's not the expense for it's quite inexpensive, but I'd prefer with my sensitivity to drugs to take as little as possible. The directions that come with Motilidone are for those who take it for digestive problems and they take it 15-30 minutes before eating and at bedtime. I'm wondering if I need to take it before I take Permax or if it doesn't make a difference if I take it at the same time or even later (when the Permax first hints that it's going to make me sick).
I take Permax rather than Mirapex because I have insomnia on top of RLS (which I combat with Ambien which I import from the States and various herbs) and am leery of it because I understand it increases that. The neurologist who prescribe the Permax is unfamiliar with Requip. The Permax is excellent for the RLS and I assume most of my PLMD as I am not experiencing the severe pain and extreme fatigue that I had before beginning with Sinemet last July and then the Permax in December (usual rebound and migraines with Sinemet).
Even if you can't help me lacking the experience with this drug, I'd like to say the motilidone (also Motilium) is a great drug for dealing with the Permax side effects. It has very few side effects itself (occasionally makes me hungry) and while it won't remove the headaches and lightheadedness I get with Permax, it takes care of the nausea and constipation very well. I encourage those who have no other option but Permax to consider persuading their doctor to order motilidone for them if they live in the States. I am also curious as to why it's available up here and not in the US (especially as I may be moving back down there shortly and don't want to go through the hassle I go through with Ambien).
Domperidone is the only anti-nausea medication that does not affect RLS. Unfortunately, it is only available in Canada (the FDA is pretty tough, and clearly no drug has thought it worth their effort and expense to get this drug through the FDA - Permax is available in the USA). It can be taken at any time, but as you have already noted, the best time would be with or a little before taking your Permax, as it would be active while the Permax is causing its side effects (you can play around with the timing to find the best sequence to take the medications).
Mirapex or Requip might be a better choice as they do not cause as much (if any) nausea. They do not cause insomnia, so your concerns about this should not be warranted.
Sent: Wednesday, May 10, 2000 11:52 PM
Subject: RLS and pregnancy
Well it is about 2:00 a.m. and I am doing horrible tonight. I am changing medications and the new medication is definitely not working very well. My legs have been driving me crazy since 2:00 p.m. and I have been crying like a baby all day. I feel as if I am going crazy. My husband wants so much to help but he can't even touch me with out my legs flaring up even worse. God, I don't know what to do!
I am changing from Vicodan to Neurontin and well, it's not working. I just now broke down and took Vicodan for my sanity. I am stuck because I am concerned that my baby may become addicted to to Vicodan this is why I am trying to change meds. But I am on bed rest so if I pass taking Vicodin, then I am also hurting my baby because passing causes me to contract. which of course right now is a big no no.
So, what do I do? I may hurt my baby by taking Vicodan but if I don't then I can hurt her by going into early labor. I really just needed to vent, but I will take any suggestions or just any one to talk to too help calm me down.
Consider (with your obstetrician) using one of the class B drugs (Permax, Ambien) or one of the class C drugs (Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Tegretol, Neurontin, Catapress). They should provide much more relief.
Sent: Thursday, May 11, 2000 12:01 AM
Subject: RLS-WHAT WORKED FOR ME
I am a 55 year old female who has fought RLS since I was 20; it runs in my family and we call it the "hebe jebe's". I went on a 30 carb a day (or less) diet and my RLS disappeared. When I eat too many carbohydrates (especially sweets), it comes back with a vengeance. I believe RLS is caused by a chemical imbalance, which also causes my insomnia, unrelenting food cravings and opposite reactions to drugs; my dentist has to give me twice the amount of medicine to keep my mouth deadened long enough to fill a cavity. Obviously, RLS people's brain chemistry is more sensitive (acute) than a "normal?" person's.
There are certainly some differences in the brain's of RLS patient's, but it is not clear what these changes are and how they affect the patient's symptoms. Different foods (such as ice cream) have affected some RLS sufferers) and different avoidance diets seem to help others. This affect seems to be very inconsistent.
Sent: Thursday, May 11, 2000 2:10 PM
Subject: Do I have RLS?
I'm not sure if this is what I am experiencing. Although, a lot of what I am reading fits. I don't experience any creeping, crawling or burning sensations. Ever since I was young, I have always experienced aching legs especially while sleeping. Hot baths were my remedy. I kicked in my sleep as a child but not as an adult. The problem has definitely worsened as an adult.
My legs ache and tingle at night and day almost everyday. Worst at night but also ache while walking. I live in New York City so I walk everywhere. My arms have recently been affected by this as well. I always thought I had a poor circulation problem because of the tingling. I do notice that I shake my legs a lot while sitting to reduce the aching. Tylenol helps and straightening my legs and keeping them still. I drink a lot of diet cokes, which cannot be good for me. I also have to take a nap everyday because I can't stay awake.
So is restless leg syndrome my disorder? If so, what do you suggest besides not drinking the diet cokes. This starting today, I will reduce drastically.
It does sound like RLS. If you have an almost uncontrollable urge to move your legs (or arms) when you get your achy sensations, then it is very likely that you have RLS. You are on the right tract in that caffeine is known to be one of the commonest chemicals that worsens RLS. If this does not help, then check out our RLS Treatment Page for more information.
Sent: Friday, May 12, 2000 9:47 PM
Subject: RLS and medication
For four years I have been taking .5 mg of clonazepam, 5 mg. of Ambien, and 50 mg. of Ultram. The combination stopped my RLS symptoms cold! I slept a good 8 hours at night. And I didn't have any daytime grogginess. However, I did notice a drop in my memory capabilities, some mental confusion, and a little more unevenness in my balance.
During the past 8 months or so I've begun to have RLS symptoms return from about 5 PM till bedtime, when I then take my medication. My doctor merely says to up the doses. (I did but it didn't help all that much.) I have read that Ambien should be for short term only, and clonazepam can become addictive and hard to get off, and should not be used for prolonged periods. So I certainly don't want to increase the dosages of something I shouldn't be on so long.
The only thing my doctor knows about RLS is what I've taught him (which I learn from the internet). He doesn't seem interested enough to try to learn more. He dismisses my numb-feeling legs and shooting pains in my toes or ankles as "part of the RLS" and does nothing about it. I am sleeping poorly these days, and the old depression wants to return, but I'm managing to keep it from getting too bad.
I was given Parlodel (bromocriptine) but it didn't do a thing for my sleep. I was still on the clonazepam so don't know whether it helped the RLS or not. I have never taken Mirapex (though I hear from some that it is great, and from others that it causes insomnia and/or nausea. I certainly don't need something to make my insomnia worse,it's getting bad enough now!!)
Is there some way, short of cutting out the medications entirely, that I can make a change and keep the RLS quiet and get some sleep? Unfortunately I'm on an HMO plan and they aren't too willing to pay for certain of my meds, but I could probably get my doctor to go to bat for me and they will give them to me. Before I started having the return of the RLS problem, I tried cutting the dosages down at times (very slowly) and get to about 1/2 the usual amount, when the RLS would start kicking in and I'd have to raise it again. Right now I'm on the full dosage. I even tried taking and extra 1/2 pill of the clonazepam about 6 PM, but it doesn't seem to help much. I tried 1/2 of a Ultram pill, with the same result. Sometimes I wake up at night with my legs constantly moving, and I have tried taking 1/2 Ultram at that time. It usually helps quiet the legs and some of the time I return to sleep.
I have never been able to take anti-depressant meds because they aggravated the legs. Starting at the first of the year I began taking an O.T.C. product called 5-htp (hydroxytryptophan). It elevates the serotonin, and has worked quite well for me. Though my RLS returning tends to make me depressed, the 5-htp is keeping me fairly stable.
I am 81 years old, and have had RLS all my life. The 10 years prior to finding the medication was pure hell, since I had it almost 24 hours a day. I can't bear the thought of getting off all medication and going through that again.
Do you have any suggestions?
Whether or not you are in an HMO or not, you should be given proper care. If your primary care doctor cannot (or will not) treat your RLS effectively, then you have a right to demand referral to a specialist who can resolve your RLS complaints. Even in an HMO, you can get any medication (on the formulary or not) if your doctor provides paperwork that justifies the need for these medications (I do this all the time).
Clonazepam is not a good medication for seniors as it has a very high percentage of side effects in this group. You have already experienced the mental problems and other problems such as daytime sleepiness are very common. Once you get on better medication, you should be able to taper off this drug. Ambien can be taken every day without much chance of tolerance, but I still like to recommend using this drug with some drug holidays.
Mirapex or Requip are the best drugs for RLS. A small minority do get insomnia, but most RLS sufferers do not get this problem with these drugs. It is definitely worth a try and will probably let you get off of clonazepam. Ultram can be used on an as needed basis, but the less used the better it will work.
Sent: Sunday, May 14, 2000 8:39 PM
Subject: Numbness and leg pain with RLS
I've just read a letter from a sufferer in Scottsdale. She mentioned leg numbness and shooting pains in her toes. Is this a common complaint from RLS patients? The reason I ask is because I have numbness on the sides of my legs below the knee. Also, once in a while I will get a sharp pain almost like a stabbing, in a toe or some other random part of my leg. They're quite alarming and usually start my symptoms going. I'd be glad to find out that this is a normal part of RLS.
Thanks for your diligence in our behalf.
Numbness is not a very common problem with RLS, but a significant percentage (about 10-30%) of RLS sufferers may have this complaint. Sharp stabbing pain is not usually associated with RLS, but if it heralds the onset, it may either be a part of the RLS, or just a trigger of your RLS.
Sent: Tuesday, May 16, 2000 9:03 AM
Subject: RLS not doing well with Neurontin
I last wrote to you in March of this year. On March 28, I began taking 900 mg of Neurontin (300 mg 3x daily). I was thrilled with the results. Now, I am exhausted again. The past week, I have been back to normal, sleeping around 2 hours a night, if I'm lucky. The RLS is almost worse than before. When sitting in my recliner, you can see my leg twitching. I feel like I'm slowly going insane.
My doctor has also prescribed Vioxx (50 mg) which the first month seemed to help a little and now (second month) doesn't seem to do anything. I cannot take Ultram as I broke out in hives. Would you suggest switching to Mirapex? I have tried Ambien in the past few months, but felt I was becoming addicted to it... was taking 2 and sometimes 3 to get to sleep instead of the one that I was prescribed. It starting to affect my work again.... argh!
Thanks for your help and support!
If your RLS bothers you only at night, then it is better to take the Neurontin only about an hour before you get your RLS symptoms (therefore most patients use it only before bed). Mirapex helps more RLS sufferers than does Neurontin (although individual RLS patients may like one or the other better). Give it a try and you will probably be much better.
A Reply from Karen N.
Sent: Wednesday, May 17, 2000 5:55 AM
Subject: Dose of Mirapex?
I've been dealing with it during the day as well as at night lately. I'm just discouraged that the Neurontin worked so well for the first month and then quit. It feels like it's never going to end. What dosage of the Mirapex do you suggest for severe restless leg? What would you suggest taking with it, if anything? (It's been a month off the Ambien now)
Mirapex will generally take care of most of the RLS symptoms. For times when you need a little more help, a narcotic such as Vicodin or a sedative at bedtime (Xanax or Ambien) taken occasionally on an as needed basis should suffice. For the dose of Mirapex, check out our RLS Treatment Page.
Sent: Thursday, May 18, 2000 1:06 PM
Subject: Leg pain (see previous letter, June 6, 1999)
It has been awhile since have written you, but I have had some new developments in my problem. After I went on Sinemet and Klonopin my leg pain was so much better, I could manage fine. A couple of weeks ago I had to go off the Klonopin altogether. I took myself off,not talking to a doctor, after I had to start on Reglan for my stomach. I wanted to sleep all the time. The stomach problem had no connection to the Klonopin. I guess I had withdrawal symptoms for I did not sleep any for 2 weeks. When I would fall asleep, I would have horrible nightmares, which would wake me terrified. I did not realize that Klonopin is addictive, but I do not want to take it again.
Now that I am off the Klonopin, I am beginning to have more trouble with leg pain. I did not realize that Klonopin had anything in it for the pain, I understood that it was just to make me sleep better. I am still on Sinemet 25/100, one and one half pills a day. I can't understand my legs starting back to hurting so much. Any suggestions ?
Frances in Alabama
Reglan may have a tendency to worsen RLS, so that should be a consideration when taking the drug. Klonopin can be very addicting, so your experience is not unexpected. That is one of the reasons that I recommend Ambien or at least a short acting benzodiazepine such as Xanax for nighttime sedation.
Mirapex or Requip are still much better choice than Sinemet and would likely relieve your RLS symptoms. The increased leg pain likely has nothing to do with stopping Klonopin, but rather just the RLS worsening for other reasons (such as being on Reglan).
Sent: Sunday, May 21, 2000 5:55 PM
Subject: RLS Support Group for Referral
Thank you again for easily accessible information and the knowledge available via those who also suffer with RLS.
I wrote a couple months ago asking about RLS and varicose veins. Well, I have had sclerotherapy done, and my RLS is unchanged. It is so hard to pinpoint what causes the remissions and exacerbation, but I noticed this year (when looking for my doctor's phone number), that I faxed her last year at this time (May) due to poor sleep related to RLS. And now I read that the late spring /early summer worsening is not unusual.
Anyhow, last year when I regressed back into FMS due to the poor sleep, doxepin helped me over the hump. But this year I felt I needed something more specifically addressing the cause of my horrible nights. I had read all about Permax and Requip, and was ready to go, but my doctor feels unqualified to prescribe. In fact, she said a local neurologist may help. But I want to be sure to get somebody who has some familiarity with RLS. Can you make any suggestions? I live "out in the boondocks" of North Dakota, so usually end up traveling about 2 hours to the major cities for medical care anyhow (Bismarck or Minot).
Thank you again for being "a place to turn" in time of need,
I have also yet to hear from anyone who has had improvement of their RLS after sclerotherapy. There are very few RLS specialists even in the very populated areas (such as here is southern California), so I suspect you will have great difficulty finding one in North Dakota. There are no support groups in your area.
A good neurologist or sleep specialist should be able to help you, especially if you are armed with the information from our RLS Treatment Page about Mirapex, Requip or Permax.
We have noted that a subset of RLS patients tend to have a seasonal variation of their symptoms, often in the summer.
Sent: Monday, May 22, 2000 7:52 PM
Subject: Restless Legs
Prior to my bypass I had experienced the restless leg perhaps a half a dozen times in a period of a year or two. Following my bypass on March 5th and commencing about April 14, 2000 I started to have the experience nightly, usually about 2 hours after Jay Leno's commencement of introduction of guests. It would be an impulse difficult to ignore and I would twist and turn and after an hour or two it would disappear or I would go to sleep. Sometimes massaging the left leg, where it was most usual would stop the sensation. During this period my head would become very itchy and when I scratched my full head of hair (age 68), the symptoms would cease, and one night by jamming my head with my finger nails the symptoms halted and I fell asleep. Having a good bowel our urinary movement seemed to help.
The doctor prescribed Clonazepam 0.5 mg tablets which help me get through a few days, but then it wore off and a few night ago I took a full pill and slept until 9:00 AM.
Right now the doctor is checking my iron level and I am taking potassium gluconate pills to so she the doctor can follow through. I am also trying to avoid salt and sugar whenever possible, and am considering the effects of other prescribed pills that I am taking. I do not experience any symptoms other than the usual two hour lapse after going to bed, although once my wife fed me a large bowl of ice cream and the symptoms seem to start as soon as I rested.
My father now almost 92 said he had this experience some years ago and my half brother said that quinine had cured his ailment. So hopefully all is not lost, and their is hope ahead. Perhaps the removal of the vein for the bypass is involved. Another thought. Since my first heart attack in 1986 I had the migraine aura without any headache. It was infrequent. However around two years ago I started chewing three sticks of gum with aspartame after each meal in order to avoid dessert.
Since the bypass, the aura happened every three days. However, at the end of the 25 minute experience I put three sticks in my mouth and the aura recommenced. That was on April 14th, and I quit the gum and the auras have not reappeared and today is May 22, 2000. However, that is about the same time the restless leg started as if it were some kind of withdrawal symptoms. Fortunately I am retired and can nap during the daytime.
Harry A. F.,
Any trauma to the body (back surgery is the worst, but any surgery can do it) can trigger RLS and cause it to worsen. Once this happens, the RLS seems to continue even after the trauma is over.
Clonazepam is not my favorite medication for RLS, as it causes increased daytime sleepiness and has a high rate of tolerance. Other medications such as Ambien work better.
Vitamins, quinine, and other minerals help RLS infrequently so should not be pursued unless you notice a significant improvement with them. Ice cream seems to a common food that worsens RLS.
Sent: Tuesday, May 23, 2000 9:56 AM
Subject: Pain and stiffness in feet and legs
I have RLS which is helped with Mirapex. Recently I am noticing increasing muscle pain in my legs and feet. In the morning after awaking I am extremely stiff. Is this something that goes along with RLS. Because I also have been experiencing muscle pain in the neck my doctor feels I might have polymyalgia rheumatica. My sedimentation rate is slightly elevated. I am 63 years old. My mother had RLS and polymyalgia rhuematica but not until she was older. Thank you for any suggestions you might have regarding this muscle pain and stiffness.
The leg/feet problem is likely due to RLS, but it sounds as if the neck problem is separate. PMR (polymyalgia rheumatica) almost always has a very high sedimentation rate (usually above 50), so it is also less likely that this explains your problem. Neck pain is very common (caused by disc disease, muscle strain, etc.), so it would not be unusual for this co-exist with your RLS.
Sent: Tuesday, May 23, 2000 11:52 AM
Subject: restless legs?
I have been searching these related sites for any information regarding my symptoms. I am told that my feet move constantly all night long. I either rub them together like a cat kneads a pillow or another cushion type thing or I move them to the point of wearing out parts of my sheets. I don't feel any discomfort when I wake up nor does this keep me awake although I have been told by my husband that he hears my legs and feet rubbing together.
The only other sleep activity that I have are very vivid dreams and nightmares. I sleep very heavy sometimes although if I get up in the middle of the night, I can't get back to sleep for hours. Sometimes I sleep so heavy that my teeth hurt but that's probably unrelated.
Anyway, is this something that can be considered a disorder and if so, is there anything I should do or not do. I have been like this for as long as I can remember. I don't think I have RLS.
Any information would be greatly appreciated.
You do not have RLS. The associated condition, PLMD, may occur with or without RLS. This is the leg jerking disorder. These tend to be kicking movements, not rubbing ones. If you are not sleepy during the daytime, then there is no medical reason to investigate the problem any further.
Sent: Tuesday, May 23, 2000 1:12 PM
Subject: Head Massage
I read with fascination every once in a while when another sufferer mentions something unusual that works for me also. Usually, it's something a little "out there." The letter from Hawaii mentioned that when he scratches his head, his RLS symptoms subside. I have noticed that when I brush my hair at the nape of my neck, my legs tingle at the same time! Isn't that interesting? It happens everytime. I'm wondering is this has anything to do with the location of the cerebellum. (It has been mentioned often as the jumping off point for RLS) What do you think? Any correlation at all?
Thanks in advance for your response.
We have no idea why touching, scratching or brushing the head or scalp should help RLS. There is no relationship between the outside of the head and the brain. Touching the head or neck will only stimulate the sensory fibers that travel to the corresponding part of the sensory area of the cerebral cortex and thus has nothing to do the cerebellum which just happens to be located behind the area that is touched.
Sent: Tuesday, May 23, 2000 2:39 PM Subject: restless legs
I have been reading the web page and learning a lot about RLS. I have been suffering with this condition for about 5 years. I am 42 and feel it is time to try and get some help. The condition is never consistent. Sometimes I never have this feeling and then other times I get it at night on a regular basis. There is never a pattern to this disorder. I also suffer from anxiety disorder syndrome and have been on Paxil for a couple of years and doing very well.
I also took clonazepam to relieve the severe anxiety. I seem to have that problem under control. So now its time to deal with the RLS. It is not to the point where its driving me crazy yet but it is a problem that I could use some relief. I mostly get pain at night in bed and when I sit for long periods of time watching movies. Sometimes I feel the sensation in my arms as well. Mostly the problem is after supper in the evenings. It is so odd because some days I get it and other days there is nothing. I am wondering if there is any relationship to anxiety problems and RLS?
I am very hesitant to go on any medication because I am on Paxil 20mg a day and do not want to deal with side effects from other medications. I read my letter from a guy who said exercise helped him. I try rubbing my legs , massaging them, you name it whatever will get rid of the sensation. It does keep me up at night at times. Just looking for advice and wondering what my next move would be. I did mention this to my doctor once but I think she was in the dark regarding this condition. I feel like I have to me my own doctor and figure this out myself.
The answers are confusing because everything I read indicates so many different medications and it seems hard to find the one that's best for yourself. I hate to be a guinea pig and experiment with drugs to find something that would work. I wish there was one miracle drug that worked for everyone. Anyway that's my story. I live in Nova Scotia, Canada. I wish there was more research that could tell a person why this condition happens. Is there any link to a lack of potassium, something that I read once? Anyway thanks for listening hope to hear from you.
Your truly, Andrea ( RLS sufferer!!!! )
Paxil (or most other antidepressant medications) may worsen RLS. Stopping it may help your RLS, but that is a decision that you must make with your doctor.
Mirapex is the best medication to start at your stage of RLS. It has an excellent chance of resolving your RLS problems. There is no known link with low (or high) potassium and RLS.
Sent: Tuesday, May 23, 2000 8:05 PM
Understand you have some late data regarding this medication for RLS. Would appreciate it if you would advise what you have. My provider is balking at the use of this drug. Have been on codeine for several years with fair to good results. Dosages of 15 to 60 mg.. is typical.
Codeine is fine if you are careful taking it so that you do not become addicted. If you have stayed on the same dose for years, and do not have to increase it, then it is unlikely that you will become addicted. Klonopin is not our recommended drug. If you have trouble sleeping, Ambien is a better choice.
The best treatment would be one of the newer drugs such as Mirapex, which has a good chance of eliminating your need for a pain killer such as codeine or Ultram. Ultram is tramadol which is a synthetic non-narcotic pain killer. It has less addictive potential than the narcotics, but otherwise it has no distinct advantages over the narcotics.
Sent: Thursday, May 25, 2000 2:39 PM
Subject: Getting doctors to prescribe RLS drugs (see previous letter above, May 16, 2000)
I'm having a slight problem getting my Doctor to prescribe the Mirapex. He's insisting that I see a neurologist as the Mirapex is a Parkinson's medication and he doesn't feel comfortable with it. He says the Neurontin should be helping. Well, should be and is are two different things! I do not have the time available to take off of work (I am majority in the red for sick time!) to start that again. I have seen three neurologists in the past 13 years (2 are out of start and I cannot locate them now) and one is here is Alabama and is an idiot. ("you will sleep when your body is ready"... yeah right) I am getting desperate...I haven't slept more than 3 hours a night in the past week. Can you suggest a website or something that I can search for a doctor who is familiar with RLS in my area? Better yet... want to move to Alabama? We have tornadoes instead of earthquakes! Also, my doctor will not prescribe a narcotic to help. (not that I really want to go that route... but at this point...???) What can I do?
Karen Huntsville, Alabama
It can be difficult to get proper treatment for RLS due to the fear many doctors have prescribing narcotics for any condition, and especially one that they know little about. The Parkinson's disease medications are also not well understood by most primary care doctors, and even neurologists do not use Mirapex and Requip very often. However, a good primary care doctor can treat RLS successfully if they do the reading and take the time to learn about the disorder.
Sent: Thursday, May 25, 2000 7:14 AM
My name is Joe, I live near Manchester in England. I'm 26 and have had RLS for about 6-7 years.
I had to give up work seven months ago due a worsening in my symptoms and the subsequent excessive tiredness. I was also on high doses of dextroproproxephene at that time, which was causing difficulty with my eye sight and terrible 'hang overs' the next day at work.
I heard about RLS about 10 months ago, and brought all the information I found on the web to my doctor's attention. Since then I have had all the blood tests and nerve conduction tests necessary, and they have ruled out any other possible problems.
The main medication that has been used to combat the symptoms for the last five months or so has been dihydrocodeine, and I am currently on around 400mg (minimum) a day to keep the symptoms under control. Although this medication makes me drowsy and sometimes listless I am at least able to keep a regular sleep pattern, and the morning/daytime symptoms are generally manageable.
As the main issue in my current treatment is to find a medication that will enable to go back to work, and therefore to at the least reduce my need for analgesic medication, a variety of the treatments mentioned in the RLS literature have been tried.
Firstly we tried Baclofen, which was ineffective. Sinemet was then tried, which again did not seem to improve the symptoms, even on the higher doses. Is it normal that Sinemet would not be helpful in more severe cases? I am now on Gabapentin at 400 mg / day, and this is not helping either. I have read that for epilepsy Gabapentin is used at up to 1200 mg / day. As the 400 mg / day dose is not helping I am wondering whether an increased dose might help. Can we safely try to increase the dose and see if any improvement is made ? I have also read on the 'We Move' average dosage table that Gabapentin doses can go up to 2700 mg / day for RLS sufferers, is it possible to go up to this kind of dose, and would there be any significant side effects? Also, as my RLS is quite severe ( I suffer 24 hours a day without treatment ), in your experience of treating RLS, does Gabapentin generally help in more severe cases?
I am seeing a consultant neurologist who is known to treat RLS patients in about seven weeks time. Having tried Sinemet, which I understand to be a dopamine precursor, I am wondering whether trying a dopamine - receptor agonist treatment would be more useful.
Thanks for all the great information and the help you provide.
You should be careful with the narcotic preparations as one can become addicted to this class of medication. Ultram is a good choice to alternate with the narcotics to help avoid tolerance.
Neurontin can be used up to 2700 mg per day, but that is really the exception. Most need between 300 to 1200 per day. If you do not respond to that range, it is much less likely that you will respond to higher doses. Also, side effects, such as drowsiness occur more frequently at higher doses.
The current best drugs of choice are Mirapex and Requip. You should have your doctor prescribe these to see if they will help you.
Sent: Thursday, May 25, 2000 6:37 PM
My symptoms started about 2 years ago while working in a very busy doctors office on my feet all day. Since then I can find little relief from the "jumping out of my skin" sensation that happens just as I doze off to sleep. The only thing that I have found that seems to help about 80% of the time is a VERY hot bath right before bed. Is this a common thing? A warm bath doesn't do it it has to be a scorcher but it does usually do the trick. Any other suggestions for this problem that are not drug related I am a nursing mother.
Hot baths, massages, stretching have helped a lot of mild RLS sufferers. These are very common remedies. For other non-drug treatments, see our RLS Treatment Page.
Sent: Sunday, May 28, 2000 7:39 PM
WOW! I think I just found a name for my weirdo legs! I was just looking up another sight and came across this one. I am probably one of the lucky ones. I am always tired so I never have problems falling asleep. But...when my legs start feeling fidgety, it's hard to relax. I never told anyone about it. I thought they would think I was crazy.
I do get those jerky movements when I sleep and sometimes when I'm about to sleep (I think that part is normal). Those regular 2 or 3 hour car rides were hell when I was a kid! I just told my Mom and to my surprise, she wasn't surprised at all. She has it too! And was told about it years ago!
Thanks, I guess I'm not a crazy - just my legs are!
You can feel better now that you know that 5-8% of the population sufferers from this RLS problem. You are certainly not alone!
Sent: Monday, May 29, 2000 10:43 AM
Subject: Restless Leg Syndrome
I have been on Mirapex since it came out in 1997. It completely controls my RLS, but it gives me insomnia. Lots of help! I have increased my Mirapex to .375 twice a day along with 40 mg of Baclofen. That is an improvement, but not much. I am considering early retirement because of RLS. I did try 10 mg of Ambien at bed, but I think it gave me a bad taste and made me feel "weird". Thank you for any help you can give me.
Barbara, age 61,
Mirapex is a very good drug for RLS, but if you are having side effects, it might be worth a trial of another medication. Requip is very similar to Mirapex, but the side effect profile can be a little different. It is likely that it would help your RLS in a similar fashion to Mirapex, but not cause any insomnia. Requip .25 mg (smallest size pill) is equal to Mirapex .125 mg, so just have your doctor substitute accordingly.
If you need anything more for sleep and are concerned with feeling weird with Ambien, then have your doctor give you a trial of Sonata or even low dose (.25 to .5 mg) of Xanax at bedtime instead.
Baclofen is a muscle relaxant used for MS and it has a very limited role in RLS. You may want to go off this medication to see whether it may be responsible for some of the side effects that you have been experiencing.
Sent: Tuesday, May 30, 2000 1:06 PM
Subject: Questions from RLS sufferer
I am 65 year old female. I am so thankful for your website and the RLS foundation. When I described my leg sensations to military doctors over the years, I was not given a name for my condition. So since my legs bothered me at night only and not every night, I just endured it. Now, I am equipped with knowledge and am going to request relief.
My RLS became severe in Feb 2000. I became so tired and lacking in energy that my physician in internal medicine ordered lab work. I was found to have severe anemia. My lab results read as of Feb 10, 2000
FERRITIN... 4.0 (15-150
FE SAT%.....3 (20-50)
What is the difference between iron and ferritin? I was placed on iron supple ments and my RLS symptoms went away. I was delighted, but now in May they are back. Thanks for any comments and clarification about iron and ferritin.
It can get complicated so I will explain what all the numbers mean. The iron level represents the total amount of iron available for use in the plasma (the liquid and protein part of the blood). The TIBC is the Total Iron Binding Capacity, which is the total protein in the plasma that binds (holds onto) the iron. If the TIBC is low (such as people who have low protein due to poor nutrition), then the plasma cannot hold much iron, even if a lot of iron is taken in the diet. In iron deficiency, the TIBC goes up to try to compensate for decreased iron, by giving more capacity to bind it.
Therefore, we also measure the Fe Sat %, which is the percent of the TIBC that is being used for holding iron. When that is percentage is low, it means that there is enough capacity to bind iron, but not enough iron to fill up the binding protein.
Ferritin is a protein that binds the excess iron, which is normal people (who are not iron deficient) should always be present at levels over 50. Since the ferritin binds the excess iron, it is an earlier, more sensitive maker of iron deficiency than are the above tests. The ferritin can be low long before the iron, TIBC and Fe Sat % are low.
Sent: Wednesday, May 31, 2000 9:03 AM
Subject: Trigger of RLS
I have read and written to your wonderfully informative web site previously. I just read the letter from MaryAnn C., April 18. She is taking Mirapex and dreaming of coldness in her knees and when she wakes up the feeling won't leave.
After taking lithium for three weeks (about 11 years ago), I had a similar experience in my lower leg bones. When I stopped the medication, the cold sensation went away but followed by a month of intense RLS which then stopped. I gradually started having minor episodes of RLS after that and now have RLS every night. I believe that lithium started my RLS.
There seem to many possible triggers of RLS, and once the RLS occurs, it does not remit even after the trigger is gone. There are very few consistent triggers of RLS other than trauma to the body, especially to the spine.
Sent: Wednesday, May 31, 2000 6:31 PM
Subject: RLS, what helped me.
I am 40, have had RLS for over 10 years. I have found 3 different treatments which have helped me over the years:
1. SILENT NIGHT from Nature's Way.
2. ICY HOT APPLIED TO MY LOWER BACK JUST BEFORE BEDTIME.
3. Sleeping on the floor with a 1" foam pad, sleeping on my side with my back against a wall, with a pillow between my legs, and under my arm. SLEEP ON THE FLOOR:
For about 8 years, sleeping on the floor was not to let my wife sleep. Just for some reason, sleeping on the floor with the pressure on my back, and pillows gave almost immediate relief. It works 4 out of 5 times I try it. However, all of a sudden it stopped working and I didn't sleep for several months.
SILENT NIGHT (GNC Store):
This over the counter herb was a tremendous relief. I took it before bed, and when I laid down, for the first time I could feel a "signal" go down my back to my tail bone. But then the signal did not go any further and I slept for the first time in 8 months. I went through the whole bottle and slept like a baby every night. When I ran out, I got cheap and bought some other brand with similar ingredients...for whatever reason, this never worked for me again. I have had email from several others who have had tremendous success with this product. ICY HOT:
When the silent night stopped to work, I reverted to the floor...but was enamoured with the "signal" I felt with silent night. Recently, I became aware of ICY HOT which produces a burning/cold sensation to the skin. I decided it was worth a shot to see if it could stop the signal. So far, so good. I have used it for 3 weeks, and it has worked all but 1 night when I don't think I put enough on. I get a LARGE (2" diameter or so) band aid, put about a 1/2 to 1 teaspoon of ICY hot on it and place it just above my tail bone. Just about the time my legs go restless, the ICY HOT kicks in and "numbs" it out. The HOT will burn(my wife and kid say it is painful), but if you can tolerate it, it may help.
Let me know if it helps anyone else!
We will post your letter and see if others get benefit from your suggestions.
Sent: Thursday, June 01, 2000 4:22 AM
Subject: RLS and vitamins
Gosh, I have had restless leg syndrome for many years......I am "into " nutrition and do not take any pharmaceuticals.........I have found that if I don't drink coffee or tea ( the tannic acid blocks the absorption of iron), and take an iron supplement everyday.........I don't have any trouble at all. I do believe it is and anemia thing and if you are anemic you can also be depressed and have other things like anxiety and panic attacks. I think it is purely physical and has to do entirely with absorption of iron, folic acid and perhaps B12.
The thing that I believe would be absolutely phenomenal would be to have a biochemist study absorption.....not blood levels.......because it is my theory that blood levels can be fine but it is the actual absorption that is not working.....foods like calves liver and spinach and believe it or not, instant grits are very good sources of iron..start looking on the labels and start eating iron-rich foods and see if your legs don't stop..........do not use coffee or tea, chocolate or high dairy ( I have also heard this interferes with absorption of iron), alcohol (depletes B vitamins and your crazy legs and arms will go away!!!!!!!!!)
Good luck and if anyone out there knows a real good biochemist....this is where we need to start!!!!!
It is true that deficiencies of iron, Bas or folic acid may be associated or a cause of RLS. However, absorption of these substances is only important as reflected by their blood levels. The blood level of a mineral or vitamin is what is available to the body for use and is what counts for its clinical effect. There are many factors that can affect blood levels, including intake, absorption, transport, binding by proteins, etc., but in the final analysis, it is the blood level that counts.
A Reply from Sue B.
Sent: Thursday, June 01, 2000 9:42 AM
Subject: RLS and vitamins
thank you, I am confused though, when my blood is tested it comes back within the normal range..........I, on my own, take additional sources of iron, folic acid and B12 and within a short time , the restless leg thing disappears......is is similar to the daily allowances????? Perhaps they are low and there are body chemistries that require more??? I don't know, I don't have the education to know that, but I do know how my body reacts and I have lived with restless leg syndrome for most of my life.....I am like a guinea pig...I always try things on myself after I read nutritional information that seems to open the lock, so to speak.
For example, my doctor is very kind and will "go with me" on things, my blood levels were fine, but I was having a terrible bout of RLS...I asked for prescription folic acid tablets...I would take them and feel my legs melt into tranquility...it worked.....no question...so what's up with that and what you said???. I also eat calves liver when this starts and it clears up rather quickly...the deal is this.........I don't want to use pharmaceuticals when I can use something with no harmful side effects ...doesn't that make sense???
I also would love to find an orthomolecular physician who would work with this I know there is a connection.
If your blood tests normal, then you do not have a deficiency of iron, B12 or folic acid. Taking higher than the recommended daily allowances has not been proven to have any benefit unless a deficiency is first demonstrated. It is impossible to say why your RLS gets better with extra folic acid. Many RLS patients find vitamins, minerals, herbs, etc. that seem to help only them or possibly a very small percentage them. We cannot explain this phenomenon.
A Reply from Sue B.
Sent: Friday, June 02, 2000 4:28 AM
Subject: Orthomolecular treatment and doctors.
Please be open-minded, really open-minded about this......it is truly a different way of looking at illness or any loss of balance in the body..... I know it goes against what doctors basically believe in terms of treatment...they generally look outside the human body toward pharmaceuticals as the first answer to everything.
I say to you, the human body is totally equipped. Comes that way generally...something happens over the years to cause an imbalance is generally an imbalance of some sort. Perfect balance is the essence of good health. I also believe and know there is evidence to support this belief, that nutrition plays a paramount role in this balance. paramount!!! Why would RLS be most intense during pregnancy???/ Isn't it logical that at that time a woman's body is is need of additional nutritional support? Why is that such a difficult angle to look at this problem from?
You know the most basic knowledge is generally the most overlooked at times. Do you know of or work with any orthomolecular physicians? That's the of the future......in twenty years....we will all be looking at the human body totally differently. Vitamin and mineral deficiencies will be the basis for most treatment and cure. I studied in my early youth to be a C.O.T.A., and plan to continue my education in another year in the field of nutrition.....and the thing that after 27 years still stands out in my brain is that every medical lecture I attended, they would say etiology:unknown. Well, drugs have their place in medicine, but something is wrong here.
I was barely in my twenties and I knew this wasn't the right way to look at healing and the human body. For example: Why not consider that the heart is being affected because the host is deficient in Vitamin E? Perhaps his genealogy lends itself toward a deficiency because of region and food sources through the generations........what about homocysteine in the blood being the true culprit for heart attack and stroke? Why do bypass, which doesn't fix the cause....just changes the terrain for a brief period...the cause was never addressed so it is bound to happen again. Doesn't it make more sense to do chelation? Try B12, B6 and Folic Acid to control the homocysteine? Maybe you have a ton of B12 flowing through your blood stream and so have many generations before you, hereditarily, but suppose George over here, has a genealogy line of people with very high homocysteine levels, always has - always will unless the B12, B6, Folic Acid levels are increased? Or does a bypass sound more logical?? Treat the symptoms.....not the cause! When medicine starts looking at the human body's most important asset as it's nutritional composition..it will proceed in leaps and bounds!
Doctor's totally overlook the paramount importance of nutrition and human health. I mean megadoses of certain nutrients and the effect they have on the human body. Look at the work of Dr. Linus Pauling, Nobel Prize Winner for his research with Vitamin C....sodium L-ascorbate. Do you know that most people today are woefully short of vitamin C? Do you know the long reaching effects of this nutrient alone??
I know you are the educated one, I respect that. I aspire to that. But I believe that medicine has a great shortcomings in it's reluctance to accept this way of thinking. Remember the medical schools are funded by the pharmaceutical companies........makes sense that this would greatly influence the curriculum.
There is something to what I am telling you in regard to my RLS and that of everyone who has it. If you are in the position to experiment....you are in a great position to look in a different direction and listen to someone who actually has the problem..
I can put you in touch with Dr. Alfred Libby, he was a friend of Dr. Linus Pauling's. He quite old but a genius and a orthomolecular physician out in California. He won prestigious LHD Degree in 1978 along with Irwin Stone, D.Sc., Frederick Klenner, MD., Ph.D., Albert Svent-Gyorgi, MD., Ph.D., Nobel Laureate. These men are all very educated healers who believe in the orthomolecular approach to healing......
Were you counting on this type of reply???? Probably not. Hope I have not offended you or upset you, not my intention. I am so committed to this way of thinking and believe in this approach to health that anytime I get the opportunity to expound, I go!! I hope I have at least made you think even if for just a second...it's a beginning!
My warmest regards,
I never take offense at suggestions or ideas about what may cause good or bad health. There is no question that nutrition is important and may affect our body and disease processes greatly. The problem is that there is still an incredible amount that we (doctors and scientists) do not know about the interaction of our diet and its affect on our bodily functions. It would be ideal if we knew what the "perfect balance" was and could recommend it to all of our patients.
There are many reasons why medical doctors do not recommend of the non-approved therapies (nutritional, vitamin, holistic, etc.), but the main reason is that they have never been properly proven. Every drug prescribed by medical doctors must go through rigorous testing to prove that they work. Only then do they get FDA approval and can be given to patients.
I am not saying that all the different non-approved therapies do not work, I am only saying that we have no idea whether they do work and that they are safe. The fact that many of these therapies seem to have helped many people, does not mean it actually works. Valid medical studies always contain a placebo (sugar pill) group and it is only after a treatment shows that it works better than placebo is the treatment deemed effective. It is not unusual for the placebo treatment to have a 20- 30 % of subjects improve and this sugar pill has even completely cured patients of various hard to treat diseases. So, when you have anecdotal evidence that many people you know improved with certain vitamins, nutrition, herbs, etc, unless you have a double blinded study (both subjects and researchers do not know who has which treatment) and a proper placebo group, it is impossible to say whether the treatment has a real effect, or merely a good placebo type response.
As a physician, I certainly to not want to without any beneficial therapy for my patients. However, I cannot advocate any therapy that has not been tested for effectiveness (compared to placebo) and for side effects. If you question any of the sellers of the non-approved remedies, they cannot show you any proper (or more often, no study at all, good or bad) to prove that their remedy works. They always offer anecdotal cases or testimonials which may be true, but may very possibly be due to the placebo effect. If their therapy is really good, it should be very easy to prove it in a valid scientific manner. Otherwise they have no authority to recommend any treatment, and may even be doing more harm than good.
Your point about Linus Pauling is a typical example of what I mean. He definitely was a brilliant scientist in his day, but his Nobel prize in 1954 was for chemistry (research into the nature in which atoms are linked) and he received the Nobel Peace prize in 1962. He never published any research on vitamin C. Dr. Pauling's conclusions were based on a single placebo-controlled trial on schoolchildren in a skiing camp in the Swiss Alps, in which a significant decrease in common cold incidence and duration in the group administered 1 g/day of vitamin C was found. He than generalized this finding to the population as a whole.
His promotion of vitamin C in mega doses also made "logical sense". If a little of a substance is good for you, then a lot sounds like it should be even better for you. He never did any of his own studies on vitamin to show that it helped the common cold. Despite this, thousands (likely even millions, including many doctors that I know) took mega doses of vitamin C and many even felt much better doing so. Because of Dr. Pauling's prominence, several studies were done comparing vitamin C to placebo, and in every study the sugar pill group did as well as the vitamin C group. In addition, a recent study found that people who took vitamin C in mega doses had increased coronary artery disease. This is a very clear example that every therapy needs to be tested and proven effective compared to placebo before it can be recommended.
There are several studies going on right now looking at new treatments for RLS. These studies are looking at the more promising therapies that may be able to treat the majority of RLS sufferers. There are dozens of different therapies listed on our web site alone, that have yielded cures or significant relief of RLS symptoms for our readers, however most of these just help a very small minority of RLS patients. Whether they are just placebo treatments for the people who write in to tell us about them, or whether there are many types of different RLS types, each requiring different treatment is not known. Doing a study on each possible treatment would be impossible and would like likely direct efforts and money away from more promising therapies.
Anyone can claim success for their particular treatment. That is easy to do and will often sell well to the public. It is also easy to find people who have benefited from virtually any type of therapy, but as I have stated above, but that does not mean that it is a valid therapy (remember, I am not saying that all non-proven therapies are not valid, I am just saying that they need to be proven before they should be accepted).
I do not know any orthomolecular doctors (doctors who treat with nutrients or megadoses of vitamins), but there is a significant amount of research going on to try to prove or disprove that these therapies work. For example, a few studies have demonstrated a mild, but consistent antidepressant effect with over the counter St. John's Wort. Even though this was a non-approved medication, several different medical researchers were able to demonstrate benefit over placebo. A recent study appeared in the Australian Journal of Psychiatry, titled "Megavitamin and dietary treatment in schizophrenia: a randomized, controlled trial". It found no benefit for orthomolecular type of therapy.
The future may indeed be in orthomolecular medicine. But until these doctors perform double blinded, placebo controlled studies to prove that their therapy works, we cannot recommend this type of treatment.
Sent: Thursday, June 01, 2000 5:06 AM
Subject: Drug holiday for Permax?
I was diagnosed with RLS and PLMD by a sleep study almost 9 years ago. I was on Sinemet for 4 years, and I want to reiterate your caution on augmentation. No one wants to go through the agony I went through before we finally got over the hump and found a new medication that worked - after trying everything from Halcion to Vicodan.
I am currently on Permax and am having excellent results. I use Xanax as a back-up on nights that I am wound up. My question has to do with the letters on drug holidays. I take the Permax everyday. Do I need a drug holiday?
Only about 10-15% of RLS sufferers get tolerant of Permax, so most will not need a drug holiday. The drug holiday for Permax is different, in that a month or longer seems better. I often have my patients alternate every 1-4 months between Permax and Mirapex, and that usually works great when necessary.
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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