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Those with FMS who used an eye mask and ear plugs to block out all light and all sound found that their RLS stopped. Before bedtime they go to the bathroom, chew a few TUMS to lower body acidity, drink a little water and put on the eye mask and ear plugs. Almost to the person they report that they drop to deep, restorative sleep in about 3 minutes and stay there all night. If they wake in the night, they just repeat the process, then go right back to sleep.
I have been reading your website and found it helpful (as I was starting to think that I was either going mad or being very sick). I would like to ask a question and see if this is common. About a year ago I started having twitches in many different muscles of my body, which stated after I had something that looked like a flu type infection.
The neurologist said I have benign fasciculations. But a few months ago I started having a felling of buzzing, or energy inside my legs and sometimes when stronger also in my arms and even in the whole body. The doctor said it could be RLS and that I could try drinking tonic water (because the quinine can help), but this doesn't seem effective.
Another thing is that my husband actually has also been having twitching.. but the neurologist said this is probably a coincidence. We are both only 30 and have had no other problems previously, and this has started about the same time for both of us. Is it common for RLS to develop after or with twitching/fasciculations? should I insist to check that it isn't something else?
I'm worried, I'm only 30 and the doctor was surprised because of my age.
I read this message board in it's entirety and am completely amazed that the idea of possible parasitic activity as the causative factor for RLS has never been suggested. I began having twitching in my legs 12 years ago, followed by the "crawling" sensation in my muscles described by many of the patients, as well as heavy 'thumping" type twitching.
After 3 years and 36 "specialists" I was diagnosed with 3 types of parasites. They have actually encysted and calcified in the tissue. The constellation of symptoms for parasitic disease is mind boggling yet most "traditional" doctors don't understand the significance of how epidemic they are, nor how damaging they can be.
I lived in Arizona at the time and parasites are endemic there. The delusion that parasitic disease is limited to third world countries, or only where sanitation is compromised is medieval.
I would like to know if it is advisable to take one (1) 0.25 Mirapex at 2:00 p.m. and one .25 mg Requip at 10:00 p.m. Is it safe to mix two different medications? I'm beginning to have moderate rebound with the Mirapex alone.
Beverly Hills, FL
Sent: Sunday, June 26, 2005 9:51 PM
My husband (53) has RLS and was taking levodopa for over a year. It worked fine for a while. Incidentally, he also takes small dosages of antidepressants (Desipramine 25mg and Effexor 75mg) & also Klonopin 25 mg for anxiety). Additionally, he also takes kestrel 20 mg for high blood pressure. I know this is a lot of stuff, but all vital for him to function well as there is a family history and genetics that clearing define the need.
Now for the problem. About 3 months ago, the levodopa for his RLS started to become ineffective. He added a natural supplement to boost the level without increasing his prescription. During this time, approximately a week or two, he started to get severe nerve pain in his shoulders and arms weakening his arm muscles. He suspected the levodopa as the cause because when he stopped or started the levodopa, the nerve pain would also stop or start. He stopped the levodopa completely and his doctor prescribed Mirapex as an alternative.
both of these drugs act in similar ways, he's concerned he will still have the
same problems. He is currently on .25 of Mirapex and although he sometimes
sleeps well, once again he experiencing nerve damage to his arms losing
strength. He believes that if he continues taking the RLS meds, he will create
progressive nerve damage to his body.
I have done so much research and haven't found any side effect of nerve damage or weakening of arm muscles or severe pain in shoulder muscles as a result of taking any RLS meds. I am not sure what drug or drug interaction could be causing this.
I am at my wits end trying to find a solution or some kind of answer of what is causing this side effect and what to do about getting his life back on tract. Right now his choices seem to be stay on Mirapex get some sleep and accept nerve damage to arms and shoulders with fear of it worsening - or - stop the drug and not sleep. Not much of a choice.
Is it possible that taking too little a dosage of Mirapex .25mg or taking too much levodopa could actually cause a deterioration of his muscles?? I was thinking that perhaps the right titration or correct dosage of Mirapex was the problem. (meaning that he is on too low a dosage) My husbands tends to want to stay on small dosages of everything because he has to take so many meds to begin with. Is it also possible that the other meds or combination thereof is causing his muscle deterioration and or RLS??
Unfortunately he doesn't inspire a lot of
confidence in having to take meds of any kind and I wish alternative medicine
could be an option for him, but don't believe so. He believes in natural
heeling, etc. and takes vitamins and other minerals. But, he has also eliminated
all of these supplements intermittently, in search of answers to his problem.
It's hard for me to get him to confide in his doctor as he finds them a bit
I do not know of anyone else in his position of having to make a choice between sleeping with nerve damage or not sleeping. Without some kind of help with his RLS, his nights are a nightmare, getting the creepy crawlies and slapping his legs all night. I also understand that RLS is progressive without any meds for treatment and have witnessed that over the last 6 years of this disorder.
Can anyone please give me some solutions or answers to these questions or some kind of insight as to what we can do. I'm sorry this message has become so long, but I wanted to be thorough so that all causes and effects would be clear and nothing overlooked.
I am aware of the new drug Requip, but not sure that changing meds is necessarily the answer, but am open to it.
Thank you for any help,
You are correct in that there is no connection with the RLS medications that
you have mentioned and muscle or nerve damage. If he is getting nerve or muscle
problems then another cause should be investigated.
Levodopa does worsen RLS as it causes augmentation which can dramatically increase RLS symptoms intensity and frequency. Mirapex should work well for RLS but he may need higher doses as .25 mg is still a rather low dose. Although Requip is the only FDA approved RLS drug it is quite similar to Mirapex so unless he does not tolerate Mirapex there is no reason to change to Requip at this point.
The two antidepressant medications that he is taking (Desipramine and Effexor) both tend to cause worsening of RLS and may be part of his problem. If it is reasonable he may do better on Wellbutrin (this drug often helps RLS in addition to treating depression).
I'm at my wits end. I have had RLS my entire life (+30 years). I have been prescribed different medications including Mirapex, Requip, Neurontin, Gabitril, Xanax, Klonopin, Darvocet, and Vicodin. While I get some mild results with some, I have yet to get total relief. It gets so bad that I wake up numerous times at night and have to get up and pace, play video games, browse the Internet until I'm ready to try to go back to bed. Other times, I just constantly flip/flop around on my bed. I typically can't even get to sleep unless I constantly jiggle my feet. I can't think of the last time I got even 6 hours of uninterrupted sleep. I have tried hot showers, yoga, and exercise prior to bedtime as well, yet I'm still not getting relief.
At a recent dinner, the topic of my RLS came up and the problems I have been having. An individual at the table said that she had the same problem, however, her doctor prescribed Marinol and that she has not had a problem since. She is able to sleep straight thru the night and wakes up refreshed AND NO side effects. She suggested that I discuss with my doctor.
After looking over your site, I see other mentions of Marinol that might back up what she is stating. However, I'm afraid to bring this topic up with my doctor due to the stigma of the medication. I also haven't seen any updated information on your site regarding Marinol and RLS/PLMD or whether any studies have been done to confirm it.
Can you provide any comments on this and/or how best to approach my doctor with this question? I'm afraid my doctor will think that I'm just looking for a legal way to get high. With all the other medications I've taken, I would think that Marinol would be safer than some of these and/or other opoids. Plus if it works....I could finally get some decent nights sleep!
thanks for providing such a wonderful site!
The effect of taking oral Marinol capsules is quite different from smoking marijuana. After oral administration, Marinol has an onset of action of approximately 0.5 to 1 hours and peak effect at 2 to 4 hours with a duration of action for psychoactive effects of 4 to 6 hours and does not cause the so called "high feeling". Marijuana, when smoked will onset within seconds to a few minutes with very high peak blood levels compared to the lower steady levels that onset slowly with Marinol.
Patients find that Marinol does not work
as dramatically as smoking marijuana. Based on anecdotal clinical patient
reports it appears that a minority of RLS sufferers may experience a modest
benefit for their RLS symptoms with Marinol. This drug comes in 2.5, 5 and 10
mg tablets that can be taken up to 2-3 times per day with a maximum daily dose
of 20 mg.
You may want to consider methadone for treatment of your refractory RLS symptoms.
I am trying to find out reasons and remedies for muscle twitches which keep me awake at night. They can happen anywhere in the body (arms and legs mainly). It is more like involuntary muscle jerks that happen just as you are relaxing to go to sleep. A leg can twitch, an arm can twitch, even muscles in my neck and head can twitch.
I am currently taking amitriptyline on a regular basis for anxiety and as this has not stopped the muscle twitches I am coming off this to see how I am. I also suffer from fibromyalgia and have associated low DHEA levels. The only thing I have found that stops the twitching is clonazepam. But I have to almost force my doctor to give me this (addiction issues etc). I have been to a naturopath and he has suggested that it is a nerve problem.
A psychiatrist I had to see also said it was a nerve malfunction. I take magnesium and calcium and this has made no difference. I am not sure what to think as I never know when it is going to happen and most nights get bad sleep. I feel that alcohol definitely makes the problem worse. I do suspect that my nervous system has a big part to play in this problem.
Anyway, I am trying to find solutions to problems that I may not be able to get answers for in the short term.
Medical ReplyYou may just have sleep onset hypnic jerks which do not respond very well to treatment although benzodiazepines like clonazepam may be helpful. They may also be PLM's which respond poorly to clonazepam but much better to low dose dopamine agonists such as Requip or Mirapex. You would need a sleep study to differentiate the two possible conditions causing your jerks.
here is a name for this sudden loss of hearing but I don't remember it. The ENT specialists have no idea why this happens but its not uncommon. Could this be related to the Mirapex?
I've also heard that Mirapex is related to various compulsive disorders. Anything to this?
I have been diagnosed with PLMS, mostly occurring at night. For the past 3 years I have been taking 1mg of Cabaser before bed and have had restorative sleep, until the last month or so.
I am now having difficulty falling asleep, staying asleep, restlessness, and limb movements. I am also noticing period of restless during the day, in my toes, calves and fingers. Is it possible that I have developed a tolerance to Cabaser?
A Reply from Carol
I currently take 1 mg Cabaser before bed, (I was originally prescribed 2 mg and when I was symptom free was advised to lower the dosage and see if the lower does still worked, which it has done up until recently.
I have recently revisited the web site and note that there is now a warning about Cabaser. Should we (my doctor and I ) be considering other medication?
I would like to try Requip, but I'm not sure what dosage I should start with. My symptoms were typically in the early evening until recently but now they begin by 11:00 am. Could you advise me what I should do to switch and the dosage so I could request this of my doctor.
A Reply fromJanis
Now, I am still taking the .25 mg, but I will take one by noon and again around 3:00 pm, another between 6:00 - 8:00 pm, again around 10:00 pm, just when I want to get into bed and sleep and I still wake up many times with my legs bothering me. If I get desperate enough I take a couple more pills. Last night I was wild they were so bad, so I think I took even more than 2 mg total yesterday (then I woke up this morning with a drug headache hangover). All of these times are because my legs are bothering me and it doesn't seem to matter if I take 1, 2, 3, or 4 pills at a time. I get almost no relief!
As for the methadone, I would certainly be willing to try it, but is this something that most doctors are willing to give their patients? I have a very good doctor when it comes to listening to what I have to say about my treatment because he knows I know what I am talking about, but he is becoming more conservative with prescribing so I'm not sure if he will be open to it.
Thank you for your suggestions and I really think the latter is the way I should go as it really seems like the Mirapex has almost stopped working, period.
I am a 48 year old male with RLS. This was diagnosed via a sleep study. At first, approximately 1 year ago, the RLS was VERY mild. In fact, I considered not even taking medication. However, a neurologist at Duke University suggested I take Mirapex to aid in sleep, and advised the drug was "very safe".
I do feel it is safe, however I am experiencing what I consider "severe augmentation". I now have RLS at all times of the day, including occasional bouts in the am, which previously NEVER occurred. The Mirapex does help me get to sleep, but the daytime symptoms are horrible!
I basically have 2 questions. Would a switch to Requip be advisable? If I stop Mirapex, does the augmentation subside and return to only evening bouts? I have never heard this issue addressed.
Thank you so much for your time in responding to all of us sufferers. It really is a debilitating condition, and your input is GREATLY appreciated!
I have been on .75 mg. of Mirapex for 4 years and recently have experienced augmentation and those sensations in the arms during the day. I take one 300 mg. Neurontin at bedtime. Recently I have added one Neurontin around 2:00 p.m. and have noticed a decline in daytime augmentation.
I would like to get off Mirapex and need advice on how to gradually reduce this medication. Also, if I can go completely off Mirapex, should I increase Neurontin and/or add another drug, perhaps an opioid?
I am a senior and have had RLS all my life, actively for the past 20 years. I am healthy and live an active lifestyle, but would like more sleep. I get about 4 to 5 hours sleep a night without RLS but experience insomnia and sleep attacks during the day. I understand that Mirapex can be the cause of this.
I have severe restless legs both day and night that began 11 years ago, shortly after having my thyroid removed. For the past five years I have used Permax fairly successfully, but it no longer seems to work. I was taking one .05 mg in the morning, and another .05 mg Permax about four in the afternoon since my restless legs become quite active early in the evening. Until four months ago I was also taking two .25 mg Permax before bed and getting about 6 hours sleep before RLS awakened me.
All of a sudden it stopped working. My doctor eventually increased the evening dose of Permax to four .25 mg pills, but I got only two or three hours of sleep on that dosage. In the past I have tried Klonopin, Sinemet, Mirapex, and Neurontin, so we decided to try Requip. I have spent many totally sleepless nights the last 10 nights, and have worked myself up to a dosage of 2.5 mg of Requip, but I am still not getting any relief. I don't sleep at night, and my legs are going crazy in the daytime as well.
I have used a little Xanax and/or Ambien to help me sleep while I add sufficient dosage of Requip for my needs, but it's like taking candy. They do nothing to help. At this point, my neurologist feels her RLS experience is too limited to help me and she referred me to another doctor who can see me in three months. I'm desperate.
I am 49 years old. I have had RLS since age 21. Until about five years ago I thought I was the only person with this affliction, which my wife termed “crazy legs”. I went to a sleep clinic and was prescribed Mirapex. It has been wonderful. I take two pills (0.5mg?) every night and the problem is gone. As an added bonus, I feel that Mirapex improves my concentration. I now draw a parallel between my childhood and teen attention deficit disorder (way before this was understood or treated) and eventual RLS.
The problem is this: I have had a problem peeing (suspected prostate) for almost as long as I have been on Mirapex, and it has lately become worse. One side effect of Mirapex is I believe a slight lowering of blood pressure. The drugs prescribed for the “peeing” problem are essentially blood pressure lowering drugs (alpha blockers). I cannot seem to handle the two pills at the same time. I seem to be faced with a difficult choice of discomforts.
I recently found a reference to possible side affects of Mirapex as including troubling urinating. Perhaps the long term use of Mirapex is actually a cause or contributor to my peeing problem???? I'm wondering if any readers are aware of a link between Mirapex and urination. I'm also wondering if there are anyone is aware of any naturally occurring substances that operate in the same manner as dopamine agonists?
Many thanks. Medical Reply
A Reply from Sheldon R.