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Sent: Tuesday, April 10, 2001 12:55 PM
Subject: RLS or benign fasciculations?
How can you tell if you suffer from RLS or from benign fasciculations in the calves? Do cramps, besides muscle twitches, occur in benign fasciculations? Is an EMG of any help in the diagnosis of benign fasciculations?
Thank you in advance for your answer,
Saskia from the Netherlands
Benign fasciculations are not generally associated with any pain and are quite different than RLS. With fasciculations, the muscle in the calf (or elsewhere) simply twitches. If cramps occur, they are independent of the fasciculations.
Only RLS is relieved by movement and is associated with the irresistible urge to move the affected limb. RLS and fasciculations are both clinical diagnosis and EMG's have no role in either of these problems.
Sent: Tuesday, April 10, 2001 1:49 PM
Subject: Tolerant to Ultram?
You may recall that in early March I took a 10 day drug holiday from Ultram and replaced it with Vicodin. When I went back to Ultram it worked again very well for about 2 weeks. However, in early April, I started getting pain in my legs (mostly at night) which worsened considerably in recent days. Also I seem to have had a reaction to the Ultram with tingling sensations in my legs and head as well as some anxiety.
Yesterday it got so bad that I stopped taking the Ultram and have gone back on a drug holiday, taking Vicodin in place of the Ultram. The pain and other symptoms have gone and I am doing ok on the Vicodin, Mirapex and Alprazolam. For your ease of reference following is the dosage of the various medications I have been taking:
Ultram: 25mg three times each day
Mirapex: .125 mg at 8am .125 mg at 3pm and .5mg at bedtime
Alprazolam: 1mg at bedtime
Vicodin (Hydrocodone/apap 5/500): 3 tablets spread throughout the day
As you can imagine I am rather anxious about my condition. I have an appointment to see my doctor in Denver on April 20th and do not want to go back on Ultram before I see him again. My thinking is that I should stay off the Ultram for the time being and stay on Vicodin for about another 10days at least. I seem to have developed a tolerance to Ultram that I have been on since 1997. Please let me have your thoughts as to where I go from here.
Thank you so much,
Leon K .
The way RLS interacts with different drugs at different times (the reactions can be totally opposite to each other at times without any apparent explanation) can be very perplexing.
My advice is to stay on Vicodin for now. After a month or so, it might be worth trying Ultram again, but in a different fashion. I have several patients who alternate Vicodin and Ultram during the week. Generally, one drug is taken for 3 days and the other for 4 days. This dosing scheme seems to work well for many patients.
Let me know if you have not done this type of alternating (Ultram and Vicodin) before and how it works if you do try it.
A Reply from Leon K.
Sent: Tuesday, April 10, 2001 8:09 PM
Subject: Ultram tolerance.
Thank you so much for your prompt response. I have not tried the dosing scheme that you suggested but will talk to my doctor about it and let you know.
Again, I can't begin to tell you how much I appreciate your counsel and your "being there" when things are not going well. It is truly a comfort to know that "somno@earthlink" will respond to the SOS messages.
(In case you or your readers don't know, SOS was the Morse Code distress call which was used by people all over the world to signal their need for help-- the SOS standing for "save our souls")
Sent: Tuesday, April 03, 2001 12:50 AM
My doctor wants me to try Neurontin again. There no side effects (nothing listed in your treatment area). I would appreciated knowing what the side effects are because I remember having weird side effects.
Thank you for any help you can give me,
We have noted that few side effects are noted with Neurontin when given for RLS. The most common side effects when given for RLS (in my experience) are sleepiness and dizziness). Most of the information available (listed below from the PDR) comes from the addition of Neurontin to other anti-seizure drugs which may increase its adverse reactions.
The most commonly observed adverse events associated with the use of Neurontin® in combination with other antiepileptic drugs, not seen at an equivalent frequency among placebo-treated patients, were somnolence, dizziness, ataxia, fatigue, and nystagmus.
Approximately 7% of the 2074 individuals who received Neurontin® in premarketing clinical trials discontinued treatment because of an adverse event. The adverse events most commonly associated with withdrawal were somnolence (1.2%), ataxia (0.8%), fatigue (0.6%), nausea and/or vomiting (0.6%), and dizziness (0.6%).
Sent: Wednesday, April 11, 2001 4:39 PM
Subject: Treat RLS with weight loss and exercise?
I'm sorry to take up your time, but I found your website so very informative. My problem is not as severe as has been described, but I believe it is the same problem. I've described it to my husband and doctor as feeling like there is no blood circulating in my legs. I toss and turn and shake my legs to get comfortable and eventually fall asleep. In the morning when I wake up, I'm so tired, but I also have a hard time getting out of my bed because my legs feel good.
To top it off my husband snores very loudly and since I can't go to sleep right away I have to listen to it and that only adds to the sleeplessness. My doctor and husband both say that it's because I'm overweight and if I would just exercise it would go away.
Thanks for listening,
Your problem has nothing to do with your weight or with your exercise level. RLS does get better transiently with movement, but comes right back as soon as you do not move. Proper treatment should relieve your RLS symptoms and let you sleep as well as anyone else without RLS.
I do not know any RLS doctors in your area (there are not too many of us around yet). If it is not too far for you, you can come and see me at my office in Downey (about 20 to 30 miles from you). If that works for you call my office at 562-904-8200 to make an appointment.
Sent: Thursday, April 12, 2001 12:36
PM Subject: RLS
It was both interesting and fun to read many of the letters on your website. As a lifelong RLS victim I can relate to many of the feelings and actions described by the letter writers. There is one way in which my symptoms differ from the majority and that is that I suffered from them during waking hours but rarely had trouble falling asleep. In fact I would got to bed and sleep because I couldn't sit and read or watch television but could find relief by lying down on my left side which put pressure on my left leg which was usually the limb most affected.
Being a passenger in a car was always difficult and travelling by plane was literally torture.I have been taking Mirapex (or Miracle as I like to call it) for almost a year and a half and words cannot describe how much my life has improved since taking this wonderful medication. I can attend classical music concerts without fear ,arrive home from my daily commute without contemplating driving the car over a cliff, and can spend the evening reading or just relaxing without discomfort. Best of all I can happily look forward to a month long road trip to the Yukon, knowing that long hours in the truck are now feasible.
I urge anyone visiting this website who needs help to run,don't walk to their doctor and get a prescription for Mirapex. My doctor had never heard of RLS until I talked to her about it and gave her some information from the 'Net. She had also no knowledge of Mirapex . I got the dosage information from a co-worker who was under the care of a neurologist for RLS and other problems and my doctor used that info to write my prescription. If your doctor won't help find one who will. Only those who have suffered from this awful syndrome can fully understand the horror of it and the stress it causes.
Your website is excellent,well organized and very informative. It is such a comfort for RLS sufferers to find they are not alone, not crazy and that there is, if not a cure, a least a remedy.
I read a name for RLS in an ad for an over the counter medication for the Syndrome. The ad was in a British women's magazine back in the late '60s or early 70s when I was a teenager in Ireland. As far as I can recall the ad was put out by the company that manufactured Milk of Magnesia , a very British medicine for upset stomachs. The headline of the ad ran, Do you suffer from Itchy Blood? and I knew immediately what the ad was referring to even though at the time my symptoms weren't severe. I never forgot that line and as the effects of the RLS became more severe over the years it was remembering that ad that permitted me to validate those effects and not think I was crazy.
British Columbia, Canada. .
Your experiences are very similar to many RLS sufferers and your advice on how to get a doctor to write the correct prescriptions for RLS echo what I state over and over in my replies to the letters. If your doctor can't help you get a referral to one who will or find another doctor. It often helps to bring in information from the internet of otherwise to help prod your doctor into helping you.
I have seen a few patients who have no trouble falling asleep, but rather have trouble at different times of the day. Some only suffer if they wake up in the middle of the night while others only in the early evening. RLS can take many different forms in some patients.
Sent: Friday, April 13, 2001 9:22 PM
Subject: Neurontin dose?
Thank you for the information on side effects of Neurontin. my next question is: what is the recommended dose for this medication. I seem to remember only taking it at bedtime the first time I tried it. My other specialist seems to think it should be 3 times per day. Your advice is greatly appreciated.
Thank you for any information you can give me,
Here is the info from our website:
The dose of Neurontin varies from 300-2000 mg per day, with the average dose being 800-900 mg. Neurontin should be started one 300 mg capsule at bedtime. Another 300 mg capsule can be added as needed every few days. The usual bedtime dose is between 300-800 mg. For severe RLS, a morning and afternoon dose can be added. Neurontin comes in 100 mg, 300 mg and 400 mg capsules.
Neurontin (or any other RLS drug) should only be taken at the time that you need it (that is the time when the RLS is active). If you have nighttime/bedtime RLS, only take it before bed. If you have daytime RLS in addition, then take it up to 3 times a day as needed.
Sent: Saturday, April 14, 2001 4:18 PM
Subject: Fatigue or lethargy
I have been taking Levo-Dromoran (1-2 mg at noon, 5 p.m. and bed) for RLS since Dec. because nothing else works or else I cannot tolerate the other usual medicines. I am also taking iron to bring up my ferritin level and an occasional Ambien when I cannot sleep. My problem is constant fatigue or lethargy in the daytime. Could this be due to the Levo-Dromoran?
I have never noticed this reaction with any other narcotic. If it is from the Levo-Dromoran, do you have any suggestions for what I might do? My RLS is too severe to give up the only medication that works but I am questioning early retirement because of the fatigue.
You are on a fairly high dose of Levo-Dromoran and at that dose it is likely that the fatigue and lethargy can be related to this drug. It is hard to suggest a replacement narcotic as they should all cause similar problem at equally effective doses. The other narcotics may not have caused the same problems as they may have been less potent and likely less effective for RLS.
I assume that you have already tried Requip and Mirapex.
A Reply from Barbara
Thank you so much for your quick reply. I am trying to cut back on the Levo-Dromoran in hopes that I will feel better. However, it has made for a miserable weekend. Yes, I have tried Requip and Mirapex.
Sent: Saturday, April 14, 2001 2:34 PM
Subject: Reaction to Klonopin?
Recently I had to see a new neurologist, one closer to home, so that I might get my perspiration for Mirapex renewed. I have been on Mirapex for almost a year and a half, .125 mg about two or three hours before bed. It works very well, except that in the last two or three months, not quite as well, with an occasional "bad" night. I try not to take another dose, but occasionally do, although that doesn't seem to help.
This new doctor prescribed Klonopin, to be taken alternately with the Mirapex, 3 nights on one, 3 or 4 nights on the other. She wanted to prescribe methadone, but I did not want that, an d truthful.y was a little upset that she had suggested that, knowing how bad it was for the liver. Last night I took the Klonopin, but it had the opposite effect, and actually made my RLS much worse, even affecting the rest of my body, and no sleep.
Can you advise me about this? Is there something else I could take to alternate with Mirapex. Is this reaction one you have heard of before? Also, I live in the mountains. at 8200 feet. Might that be a factor or RLS?
Thank you for you help,
Most doctors (including most neurologists and even many sleep specialists) do not have much experience treating RLS and using the drugs correctly for RLS. Except for websites like ours, there are few if any resources readily available for doctors to learn how to use the various RLS correctly for RLS. This is because all the drugs used are "off label" for RLS (they are FDA approved for other indications and not officially indicated for RLS) and no instructions on how to use them for RLS exist in the usual resources (such as the PDR) which physicians can consult.
The dose of Mirapex that you are taking (.125 mg) is extremely small, even for most RLS sufferers. Most need 2-5 tablets per day. With such a small dose of Mirapex, it is not unusual to need more with time or with periods of stress, etc. We do not get concerned about tolerance to Mirapex until you need to increase to very high doses (over 6-10 tablets) to get some relief. Except for when this tolerance occurs (in less than 15% of patients with RLS), there is no reason to alternate or discontinue Mirapex.
In your case, a small increase (to 11/2 to 2 tablets) would likely resolve the problem. Also, taking closer to bedtime (30-60 minutes before bed, unless you are trying to treat evening RLS) would likely be better. Also, Mirapex works better when taken before RLS. When you add another tablet once the RLS is present (as when you take a second tablet), it often will not work as well. Taking the 2 tablets before your symptoms occur will work better.
Klonopin is a sedative/sleeping medication that just helps RLS sufferers get to sleep. It does not otherwise affect RLS. Your worsening of RLS was most likely due to not taking your Mirapex, not to taking the Klonopin. If a sleeping pill is needed (not in your case) then a shorter acting sedative such as Ambien is much better as it does not cause daytime sleepiness like Klonopin.
Methadone does not cause liver problems, but it is a very potent narcotic which should be reserved for the most severe RLS cases which do not respond to almost all the other RLS medications. There is no role for this drug for your RLS at this time.
A Reply from Gyana P.
Thank you for your suggestion about increasing the Mirapex to alleviate my RLS symptoms. I have been taking 1and a half .125 mg. nightly and it works like a charm! I thank you so much for this column, it is so great to be able to have the most up to date information.Its too bad more doctors don't have this information, especially those dealing with RLS , like neurologists.
Gyana P. in New Mexico
Sent: Sunday, April 15, 2001 8:06 AM
Subject: Antidepressants and RLS
I need an antidepressant. What is the best one you have found to use with RLS? Is there one that doesn't leave one groggy the next day?
Most antidepressant medication cause worsening of RLS, but some RLS sufferers (less than about 25%) seem to get better with them. In general, the 3 antidepressants that seem bother RLS the least are Wellbutrin, Remeron and Serzone. These medications do not generally cause sedation (like the older antidepressants) but reactions way vary considerable from patient to patient.
Sent: Sunday, April 15, 2001 5:37 PM
Subject: Severe RLS,what to do?
I am a 58 year old woman. I now know I have had RLS most of my life, but only occasionally and not very bad. About a year ago, I started having RLS episodes more often and lasting longer. About five months ago, the RLS started lasting longer and longer into the night until I was not getting to sleep until 9:00 or 10:00 in the morning. I would be so very, very sleepy, but my legs would not let me sleep!!
I finally spoke with my doctor about it and he put me on Sinemet. That let me sleep about three hours, but I have had vertigo the whole time I was taking it. I took it for over two months, hoping the vertigo would go away, but it did not. The main thing is, I now have RLS for 24 hours a day! It is so bad, sometimes I think life is not worth living.
When I read that caffeine and antidepressants can make RLS worse, I gradually got off both. I have never been able to take any kind of sleeping pill, antihistamine, or nerve pills because they make the RLS worse. I convinced my doctor to put me on Darvocet-N 100, as that has helped years ago, but is not helping now. Is it because the RLS is so much worse now, or could it be that I still have Sinemet in my system?
What can I do for my around the clock RLS?!!? HELP!!!!!
Sinemet is not a good drug for severe RLS (and probably should not be used for mild RLS either) as it can cause rebound and augmentation. The Sinemet gets "out of your system" in a few days. For severe RLS, Mirapex or Requip are the drugs of choice for severe RLS. They still have to be started at low doses (see our RLS Treatment Page) and increased gradually.
While waiting to titrate Mirapex or Requip to the correct dose, a strong narcotic (Vicodin, Percocet, etc.) may be helpful.
Sent: Monday, April 16, 2001 10:12 PM
Well I should be in bed asleep! Yeah ok, not when the legs and arms and even the stomach muscles want to jerk this way and that way. So there is no time for sleep. I have this problem during the day too, but not as bad as when it is bed time. My husband got a good laugh the other night while laying in bed I was trying to carry on a conversation with him and I started jerking so my voice was jerking along with it. I of course didn't find it very funny, but I guess I had to laugh with him.
I once had a doctor prescribe quinine sulfate which seemed to help. I've since tried to get the prescription again but no one seems to want to write one. I take Benadryl 50 mg at night before I go to bed for hives and pressure hives. There are times when I have to get up to find another Benadryl so that I'll be so sleepy that I'll just pass out and not know I'm having the jerks. This RLS is a pain. I hate the feeling of being able to feel your nerves just crawling all around inside of you until finally the jerk does its trick.
I have noticed that mine do worsen if I try to exercise, gee I can't sit around and do nothing but gain weight that isn't healthy either. Sometimes I really get to my wits end. I'm only a 39 years old female of course. My hives started back in 1989 as well as the leg jerks. As far as I know this isn't running in my family. Gee, between snoring and the RLS and taking Benadryl, boy do I struggle to stay awake the next day. Maybe I'll try some iron or some type of vitamin since I don't do either. Maybe that will help. Cross your fingers for me.
Thanks for the time,
It sounds as if you do have RLS, especially if you have an almost irresistible urge to move the affected limb to relieve your RLS symptoms. Benadryl is one of the worst antihistamines for worsening RLS, so this may explain why your RLS started being a problem at the same time as your hives starting occurring.
Check with your doctor as there are other treatments for urticaria (hives) that do not involve antihistamines (such as Singulair, for example). In addition, if you do need treatment for your RLS after you are off antihistamines, then Mirapex or Requip would be good choices. Quinine sulfate generally does not help RLS, but does help common leg muscle cramps.
Sent: Wednesday, April 18, 2001 2:27 AM
Please would you be kind enough to provide dosage details for the above and advice on the best time of the day to take it. My mother-in-law has tried Requip (not bad) and is now trying Mirapex 0.125 mg (better) but would like to see if Dostinex is any better.
Is there any problem with suddenly stopping Mirapex and replacing it with Dostinex?
Many thanks and best regards,
If Mirapex .125 mg is helping but your mother-in-law feels that her RLS needs better treatment then she should increase the Mirapex by 1/2 or one tablet every 5-7 days (under the supervision of her doctor) until her RLS symptoms are gone. She is on an extremely small dose of Mirapex, so going higher should not be a problem.
We have very little experience with Dostinex here in the USA (for RLS) and it is very expensive. It should be reserved for cases that either do not respond to reasonable doses of Mirapex/Requip or when those drugs cause unwanted side effects which precludes their use.
It is hard to know the equivalent dose of Dostinex to replace Mirapex, so that would be difficult to figure out and know how to transition from one to the other.
Sent: Wednesday, April 18, 2001 8:25 AM
Subject: Weaning off Drugs
I have PLMD only and have worked my way up to 3 mg of Klonopin and 1200 mg of Neurontin at bedtime by my doctor's orders. I had tried Mirapex but could only sleep 20 minutes at a time. I am in the process of weaning off these medications because I felt they weren't effective anymore and didn't want to be on so much if the benefits were so small.
I asked to be put on Ambien while doing this. Nothing less than 10mg helped. I would wake up after 2 hours if I took only 5 mg and if I took another 5 at that time I would only sleep about a half hour more. When I first started and was down to 2 mg of Klonopin, 1200 mg of Neurontin, and 10mgs of Ambien, everything was tolerable. Now, I am down to 1 mg of Klonopin and 900 mg of Neurontin, 10 mg of Ambien and I am miserable. I fall asleep but wake a few hours later.
I am so tired. I was wondering if this is caused by the withdrawal of the drugs or maybe the drugs were working although sometimes I sleep not at all when on them. I am so confused. I don't know what else to do. I have read that melatonin helps PLMD and was wondering if I should try that in conjunction with all of this but am leery because of the Ambien.
The problem that you are having is tolerance to sleeping pills due to being on the very high doses of Klonopin. Even though the Klonopin lost some of its effectiveness at the high dose, you have become dependant upon it and withdrawing it (even down to the more usual doses) will result in insomnia (often not relieved by even Ambien).
There may not be a better solution to your problems and misery while tapering off of Klonopin (one of the main reasons why I do not like to use this drug at all). Once off the drug, things should get better.
Melatonin works well for people travelling through time zones but not as well when taken at your usual bedtime. This is because when travelling, you are taking the Melatonin at a time when your own Melatonin levels are low (and therefore adding some may help) rather than when they are naturally high (at your usual bedtime).
Even though Mirapex did not work (you did not say what dose you were on, some may need higher doses), often Requip may help in its place.
A Reply from June H.
Sent: Thursday, April 19, 2001 4:52 AM
Subject: Re: Weaning off Drugs
I was on .125mg of Mirapex and was told to take .125 if I could not get to sleep. I had to take the extra .125 but like I said, I did not sleep long.
I may have to go back on the Klonopin. I can not survive another month and a half of this. It is worse than misery. I can not even eat.
There are other schemes for taking people off of Klonopin. Some of them use shorter acting benzodiazepines, such as Xanax. You may need to see a specialist who is used to doing this.
Your dose of Mirapex is quite low. Before giving up on this drug you can go much higher (slowly as per our protocol of increasing by one tablet every 5-7 days under the supervision of your doctor) until your RLS symptoms are resolved. It works better to take the Mirapex before RLS symptoms occur than waiting for the symptoms to occur then trying to get rid of them by taking more Mirapex.
Sent: Wednesday, April 18, 2001 11:29 AM
Subject: RLS in pregnancy
I am at the end of my first trimester (first child) and haven't been able to sleep through the night for about three weeks now. Usually I'm awake, stretching my legs, until 5 a.m., at which point I finally drift off--just in time to get up at 6 for work.
I'm taking prenatal vitamins and calcium supplements, and my doctors say my iron is unusually high, so I don't think I have any of the deficiencies that usually cause RLS (of course my doctors claim they've never heard of RLS--I hate feeling as though I have a psychosomatic illness!). Nothing helps--every once in a while I sleep all right, but when I try to duplicate my successful bedtime behavior the next night, I'm up and stretching again.
I read somewhere that "zincum metallicum" is a homeopathic remedy for RLS. Can anybody tell me what this is? Is it the same zinc that you can use for colds? If not, where could I get it? Most importantly, is it safe during pregnancy? Obviously, most drug remedies are out of the question for me.
Thanks in advance for any help,
There is no evidence that zinc in any form is helpful for RLS and I would certainly not try anything like that while pregnant. All doctors should have heard of RLS and at least have a vague idea about it. RLS is much more common during pregnancy (although usually the last 2 trimesters are more common), so your obstetrician should be somewhat familiar the disorder.
Sent: Thursday, April 19, 2001 7:13 PM
Subject: Help With Medication
I have had RLS for 18 years and have been on all kinds of medicine. However, I have been on Elavil for a long time. I am currently taking: 50 mg Elavil, .125 mg Mirapex and 1/2 of a 5 mg Ambien. I want to come off the Elavil...I have a severe craving for sweets constantly & dry mouth to name a few. However, the Elavil has a sedating effect on me.
I am one of the few who has had antidepressants help. My neurologist says its rare but as long as it works. I go to see him in May and would like to have some suggestions. I have tried other medicines but always seem to go back to the Elavil. The weight gain and cravings bother me now because it leads me to an unhealthy diet.
Any suggestions would be appreciated!!!
Elavil does cause a dry mouth but I have not heard of problems with craving sweets or weight gain (although any side effect can occur with most medications).
If you are using Elavil for RLS, it might be easy to get of it by simply slowly increasing your Mirapex slowly until you do not need Elavil. You can also increase your Ambien to 7.5 mg to 10 mg if you need further sedation at bedtime when off Elavil.
Sent: Friday, April 20, 2001 3:54 AM
Subject: drug metabolism?
Congratulations on a great and very informative website! I have had PLMD for years and have tried many different drugs (trazadone, Remeron, Sinemet, Risperdal, Neurontin) My doctor was always reluctant to prescribe a benzodiazepine. After trying all the above he agreed to give me Klonopin which was a little effective.
He finally agreed to give me Restoril (30mg) which works well. It gives me 4 hours of sleep after which I get up. For my drug holidays, I take Ambien which also puts me to sleep fast but gives me no more than 2 hours of sleep. Do you think I'm a fast metabolizer? Should I take a somewhat longer acting benzodiazepine? Finally, is there a benzodiazepine which doesn't impact memory negatively?
Thank you very much,
Everyone metabolizes drugs at different rates (the rates quoted in the medical literature are always average ones) and the range can be quite wide. It could be that you are a "fast metabolizer" or that you need a higher level of drug to get the same effect. Using a longer acting drug will likely only cause accumulation of the drug and lead to daytime sedation after several doses (the drugs can accumulate and often have active metabolites that can cause sedation).
All the benzodiazepines can cause memory problems.
Sent: Friday, April 20, 2001 6:05 PM
Subject: Sinemet & PLMD
I just got a script for Sinemet for PLMD. My sleep study (on 10mg Ambien) showed 4.5 PLM with arousal per hour, 45 per hour (arousal & non-arousal) during REM, and it seems to have gotten worse since I started CPAP for mild obstructive sleep apnea. I do not have RLS. It's just 1 to 2 tablets of Sinemet CR 25/100 at bedtime. The doctor (supposedly a leading sleep doctor) said if that wasn't enough I should see him again.
Reading your site about Sinemet has me a bit worried about taking it. Do you think I should call him and ask to use Mirapex or Requip instead, right away?
The problems with Sinemet (rebound and augmentation) only occur with RLS, so that should not be a problem.
Sent: Friday, April 20, 2001 10:24 PM
Subject: Sleepless Nights!
I have not had a good nights sleep for nearly two years, not from my own problem but my husband's! The unfortunate thing, for me, is that he is not aware of his problem, apart from when I tell him. Sometimes, his whole body jumps! Mostly, he seems to lift his legs high in the air and then drop them, causing the whole bed, king size, to shake. It seems worse when he is going into a deep sleep but can continue all night. Sometimes, if he is lying on his side he lifts the top arm and leg in the arm and then drop them.
I had moved into the guest room but prefer my own bed! He refuses to go to the Doctor because he says that he does not have a problem. Reading the letters on this site I don't think he has RLS because these sufferers seem to be aware of their problem. Can you offer any advice? I have suggested twin beds but that wasn't appreciated!
Your husband does not have RLS, but he may have PLMD. If he does not have a lot of arousals from the PLMD (if he is not sleepy or tired in the daytime then the PLMD is not bothering his sleep), then he should not be aware of this problem and there is no need to treat it.
The simplest way to take care of your problem is to get rid of your king size bed and replace it with 2 twin beds (should take the same space/width). Keep the beds together except when you go to sleep, then move them a few inches apart. You will no longer feel any of your husbands movements but will still be able to be near him and in your own bed.
Replacing your bed may seem like an expensive idea but in the long run it may be much cheaper, improve your health and sleep and save your marriage.
Sent: Saturday, April 21, 2001 8:56 PM
My mother-in-law has been suffering from RLS for years, During the past year it has gotten much worse. She is seeing a neurologist who has prescribed Klonopin and has had her try 3 or 4 different anti-Parkinson's drugs. Nothing has helped. At this point she is extremely sleep deprived and is considering suicide.
Do you have any suggestions? Or can you direct me to another place for help. We are desperate to find something to help her. At this point we think she needs to be on a strong narcotic just to put her to sleep at night but we are having a difficult time getting any physician to understand the severity of the situation.
Your mother-in-law definitely needs to see a doctor who is well versed in treating RLS. The best way to find one is to check with your local RLS support group (you can find the nearest one by logging in at the RLS Foundation's web site) and asking them for a doctor who knows RLS.
She may need narcotics and most who treat will not withhold them (in the correct doses) if needed. There are other drugs such as Neurontin and the dose of the newer Parkinson's disease drugs may not have been adequate, so please try to get her to someone who has more expertise and confidence to treat her severe RLS.
Sent: Monday, April 23, 2001 8:50 AM
Subject: Muscle fasciculations
I am a 34 year old woman and have been diagnosed with restless leg syndrome. I have all of the classic symptoms. Lately though, I have noticed occasional leg twitches (small movements) of my calf muscles. Could this be a result of the RLS or should I talk to my doctor? They don't bother me but I'm concerned they could be the result of something more serious?
Muscle fasciculation is a common problem and is not related to RLS. It generally needs no treatment.
Sent: Monday, April 23, 2001 2:23 PM
Subject: RLS success with Permax
This is just a brief note to thank you for your website and for providing a concise summary of medications being used for RLS today. My deceased mother was and I am an RLS and PLMD sufferer. I have been taking both short-acting and sustained release Sinemet for the past 8-9 years but with decreasing effectiveness. The medication was prescribed by a neurologist following sleep studies to confirm my problem. I was having increasing difficulty falling asleep at night and was waking early in the morning. I was unable to nap during the day for more than a few minutes and was generally uncomfortable when watching TV or movies.
After reading your summary of medications, I did some further reading about Permax, made copies of the articles and took them to a new neurologist here in Florida where we are now living. He was unfamiliar with its use in RLS, but did some reading of his own and agreed to put me on it.
Since the first dose of 0.25 mg Permax at bedtime about a month ago, I have been entirely free of signs and symptoms of both RLS and PLMD! It has been a remarkable turnaround. I've emailed Elan Pharmaceuticals to tell them of the experience and to encourage them to seek assurance of effectiveness and obtain clearance for this indication along with that for Parkinson's Disease.
Richard F. W., DVM, PhD
You are lucky not to have had problems when starting Permax at such a high dose. We (and most other RLS specialists) recommend starting Permax at .05 mg (1/5 of your dose) then increasing the dose every 5 days if necessary by one .05 mg tablet. Side effects tend to occur if this regimen is not followed.
At this point you do not know if a smaller dose of Permax would be effective and we do not like to use more medication than is necessary to take care of the RLS symptoms.
A Reply from Richard F. W.
Sent: Wednesday, April 25, 2001 7:14 AM
Subject: Re: RLS Success
Thanks for your reply and I sincerely appreciate your pointing out the dosage problem. Of course there is a real shortage of "RLS specialists" in the world. The young, bright neurologist I found here in Florida was about to add a narcotic to my Sinemet regimen when I found the information on your website and passed it on to him. I have a friend with RLS whose physicians continues to suggest she change mattresses!
I'm sure you know all the problems associated with the diagnosis and treatment of RLS. In my case, is there any reason I could not back off from the 0.25 mg daily dose (with concurrence from my physician) to see if a lower dose will also be effective?
Richard F. W., DVM, PhD
There is no reason not to back off slowly from your current dose of Permax. Have your doctor prescribe the .05 mg tablets and drop to 4 tablets as one dose. If your RLS is still perfectly controlled, go to the 3 tablets after one week. You can repeat the process one week later if still doing well and so on until you are on the right (and lowest dose) that controls your RLS.
Sent: Tuesday, April 24, 2001 6:34 PM
Subject: RLS and fibromyalgia
I am A 41 year young woman who has a severe problem with both restless legs and fibromyalgia. It seems that the medicines that help with one disorder make the other one worse. I am usually left to decide which one is bothering me the most at the time and treat it, leaving the other one to suffer. The restless legs usually win, as they make me a crazy person. But the sometimes severe pain from fibromyalgia makes my life and my family's life very difficult.
My wonderful husband, my delightful 10 year old daughter and I recently went on vacation to Florida from Kentucky. We drove. Need I say more? I was pretty much useless as a companion most of the time. I slept a lot. We spent a few days at Disney World where I stayed mostly in our room because I either felt too badly or I was simply too tired.
I was hoping to chat with some others out there who suffer, and I do mean suffer, with both of these problems. We may not be able to help each other, but I would love the support.
Connie from Kentucky
You do not say which medications you are taking. Most of the RLS medications do not worsen fibromyalgia, so I am not sure exactly what you mean. Proper RLS medication should let you go for long car trips and not worsen other conditions.
If you wish to have on line conversations with other RLS patients, then log on to the RLS Cyberspace Support Group web page.
Sent: Wednesday, April 25, 2001 9:40 AM
Subject: Lorcet ?
I have been taking Lorcet for rib pain due to a car accident. I've been taking one a day for the last month. I've noticed that on days that I don't take it, I get the RLS symptoms and also have to move my arms and sometimes I have to jerk my entire body to get the feeling to go away, which comes back almost immediately. It keeps me up most of the night until I take a Lorcet and then I get to sleep.
I've experienced these symptoms randomly since childhood. Am I going through withdrawal or has stopping the medicine triggering an RLS type attack?
Trauma to the body (your car accident) is a very common trigger of RLS. It sounds like you have had very mild, intermittent RLS in the past and the car accident set it in high gear. The narcotics are a very potent treatment for RLS and not taking it just reveals your underlying RLS which has now been brought out by your car accident (you are not going through withdrawal).
My advice would be to have your doctor start you on Mirapex or Requip for your RLS problems then you will not need the narcotics.
Sent: Thursday, April 26, 2001 11:27 AM
Subject: Cure for RLS
I had problems with RLS for the past 10 years. I tried everything from Klonopin, Ambien, Sonata, Sinemet and others. I had pretty much given up hope of ever beating this "frustrating" twitching at night. At that time, I read a letter from an individual suggesting a good multivitamin (everyday) and not drinking milk in the evening. I tried this for several weeks and was able to gradually wean myself from my medication. I now have no RLS symptoms and take no medicine. (Getting off the medication was not easy but I was able to do it).
Sent: Monday, April 30, 2001 6:52 AM
Subject: Requip and relief finally
I've had RLS most my life and didn't realize it had a name until 18 months ago. When I was a kid, I was told it was growing pains but as a adult it continued. I also have a mild case of CMT which wasn't diagnosed until 1989 so I just thought this was part of it. As the RLS and PLMD increase a few years ago I began to walk the floors all night. When we got the internet I was in the CMT chatroom late at night talking with a women and told her why I was up wandering she told me about RLS and gave me websites to look it up.
All these years I thought I was just weird. I had never explained this to the Drs. before and when I made a appt with my neurologist. he knew immediately what I was saying and wanted to know why I had told him about it. The first year I was on Sinemet and about December it stopped working even when he continued to increase the dosage. I was having it 24 hours a day couldn't sit in meeting or even sit. The more I took the worse it got.
I finally got a referral in March to go see him again and he put me on Requip with a month to gradually increase. My question is when I went back to him I had been on a dosage of .50 mg twice a day and .75 mg at night. I work on my feet all day sometimes long hours. I still have early evening crawlies and in the night when really tired. My doctor did tell me to go to 1.0 mg if need to on a gradual climb but I'm afraid it might react like the Sinemet did and have the problem all day long as well.
Right now I'm better than I have been for years and the Requip doesn't have any side effects. Should I stay on the dosage so I don't have rebound like Sinemet? My husband says I'm sleeping calmer than I ever have in our 27 years of marriage.
There is rarely, if ever, any rebound with Requip or Mirapex. These drugs are different than Sinemet, so that should not be your concern. I would still suggest to stay on the lowest dose of Requip that enables you to tolerate your RLS problems and live life as you wish.
Sent: Monday, April 30, 2001 8:38 AM
Subject: discovering your website
I was thrilled to discover your website on Saturday night. I suffer from RLS and it was amazing to read how many other people have the same problem and experiences. Mine started in my thirties, intermittently, and tended to happen at night while I was trying to get to sleep. Now however, in my late forties it has got much worse, but it occurs as soon as I sit down in the evening for any length of time. It's always exacerbated by the fact that although ultimately walking around is the only real cure, it's always when you are too tired to get up at the end of the day anyway, and, when you eventually do, having done all the gyrations,kicking , stretching, rubbing etc. with your leg or legs ( sometimes its just one sometimes both), you find that walking is only a short-term solution, because as soon as you sit down again it starts up.
Anyway I don't need to tell all you fellow sufferers, you already know. I haven't got any remedies, I'm afraid, but was interested to learn of the latest treatments. My own doctor when I mentioned it to him said that usually quinine is what's offered, but I see now that he's obviously confusing it with leg cramps.There is such ignorance about what now seems to me quite a widespread problem. I have tended to think of it as being associated with hormonal imbalances, but reading that so many men get it too surprised me and I see it's not really connected at all. I also assumed it was a problem to do with circulation, but I see that's probably not it either.
Aside from everything I would truthfully say that it has caused me a lot of suffering and discomfort in my life to date but reading the website is probably the single most 'relief' I have ever experienced in connection with this dreadful 'condition'. I agree with someone who suggested that it's very name or names don't lead people to take it very seriously, if it had some kind of Latin sounding name it might be.
Also I was absolutely fascinated to read a couple of people who said that at times they felt like they wished they could 'chop off their legs' as these EXACT same thoughts have come into my mind on several occasions.Not that I would in reality ever go that far but the wish to get rid of these horrible alien like things that you have no control over can be quite overwhelming. As for the reader who suggested not giving in and moving your legs as a form of control, I have tried that on several occasions, however, it is like the need to go to the toilet, you can hold on for so long, but then it becomes a biological imperative!
Thanks to everyone who wrote in with their experiences, and thanks too for the treatment page which I shall be studying in more detail later.
Get your doctor to prescribe Mirapex or Requip (according to the guidelines on our RLS Treatment Page) and your days of suffering from RLS will be over.
Sent: Monday, April 30, 2001 11:26 AM
I've had RLS since childhood and considered it normal since I never knew anything else and two of my siblings have the same jumpy limbs. Last summer I developed severe PLMD in all four limbs that finally led to diagnosis. I have had fibromyalgia like symptoms for ten years, which my new neurologist says was due to sleep deprivation from the RLS/PLMD. A low dose of Neurontin has helped tremendously, especially with nerve pain.
The last three months I've experienced more PLMD, but at least without the pain. I don't want to increase the Neurontin or the day-time fatigue gets too severe, but I'm afraid of the nerve pain if I switch to another drug. Can I stay on Neurontin and add Permax or Mirapex to it?
Adding Mirapex or Requip (as they work better than Permax for most) is an excellent idea. They should get rid of your PLMD and should not cause any side effects as long as you keep them at low dose (start at the lowest dose and increase very slowly as per our RLS Treatment Page).
Sent: Monday, April 30, 2001 4:16 PM
Subject: Jumpy Eye, Sinemet and depression
I've been taking Sinemet for RLS for the past several months. I developed a jumpy eyelid that drove me crazy. I read on one website about Sinemet possibly causing this problem. I stopped taking it 5 days ago, and the problem has gone away. I tried to tell my doctor about it, but she said that the dose that she was giving me couldn't have caused this problem. She had a name for it that started with a B but I can't remember it.
I don't have RLS every night, but with Sinemet, you have to take it an hour before going to bed, so I had to take it whether or not I needed it. I have had RLS for years (I'm 48), but didn't know what it was until I researched it on the web. I have done things like massage, wearing pressure bandages, walking and just enduring it. I also found out my cousin, mother and several other relatives have it. They told me that they take Klonopin. I asked my doctor for it, (after borrowing a few, which worked well) but she said it is too addictive. That's when she gave me the Sinemet. I used it only when I was having symptoms.
I went two months ago to ask about my hand tremors and she told me to take it every night. Since then I started taking it every night and developed the eye problem. Is Klonopin, taken only a few times a week addictive, and what is the eye twitching that Sinemet causes? I'm afraid my RLS is going to drive me crazy. I also take 225 mg of Effexor for depression daily, which is what I thought was causing the hand tremors. While taking the Sinemet regularly, my depression increased also.
The medical name for the eyelid twitching is blepharospasm. This does occur with Sinemet when the drug is taken in very high doses (this is a sign of excessive dosage), so unless you were given a very high dose (which should not be done with Sinemet for RLS) it might mean that you are very sensitive to Sinemet.
Mirapex is a much better choice for RLS in general as it is more effective and has less side effects than Sinemet. In addition, blepharospasm is not a side effect of Mirapex.
Klonopin is not one of our favorite drugs for RLS. It simply helps you get to sleep so the RLS does not bother you. It often causes daytime sleepiness, so we would rather prescribe a shorter acting sleeping pill such as Ambien would be a better idea.
Effexor can worsen RLS so you may want to consider how necessary this drug is for your depression. If you need it, then just take the necessary RLS medication.
A Reply from Cathy L.
Thank you so much. I will contact my doctor and ask for Mirapex. I truly need the Effexor as I have been on different anti-depressants and so far, this one works the best. I appreciate your prompt response and feel validated about the eye-twitching. Again, thank you for your help.
Sent: Monday, April 02, 2001 5:01 PM
Subject: RLS relief!!!
I have been suffering with RLS for over 25 years. I first noticed it when I was 15 years old and sitting in a movie theatre seeing "Born Free". It re-surfaced in my late 20's and has been ruining my life ever since. Many nights I have wanted to die. I actually fantasized about having my legs amputated, except my biggest fear would be phantom restless legs.
I finally found relief after trying every kind of pill made. I now take a time released pain pill called Oxycontin. Yes, they are addictive and cause constipation (which I control with Milk of Magnesia) It's a small price to pay to have my life back. Try it....it works!!!
Ocycontin is a great drug for RLS but should only be used after other drugs have been tried and were unsuccessful. It is addictive and may cause you to get tolerant to narcotics (which means that they will not help you) if taken incorrectly.
It is much better to take a drug like Mirapex or Requip which may alleviate all your RLS symptoms without the need for any narcotics.
Sent: Tuesday, May 01, 2001 6:31 AM Subject: Wean off Sinemet with Mirapex?
First, I would like to thank all of you for the excellent information on display here - it is probably the best single source of information about this terribly debilitating condition I have found anywhere!!
I would like to ask the following questions - then I will provide the background and details:
1. When one begins to take Mirapex, how does one know when to take it if there are
symptoms throughout the day?
2. Is there an accepted schedule of when and how to reduce the Sinemet?
Background: My wife was diagnosed with severe RLS in 1993 via sleep study (we already knew, the doctor wanted confirmation). The problem is primarily in her left leg (only occasionally in her right one) and her "jerks" are terribly violent (I have tried to duplicate them and I cannot even come close!) These violent jerks are also terribly painful as well. Since being diagnosed, my wife has been prescribed a number of RLS medications but she always returned to Sinemet as nothing else (including Permax, which, in addition to providing no relief, has left her with permanent, serious, and constant pain), provided any relief whatsoever. Now she has been on Sinemet for about five years straight and we think it is time to try Mirapex. Here is the Sinemet dosing schedule we have worked out over the years:
1200 - 10/100
1715 - 10/100
1945 - 10/100
2215 - 10/100 + 25/100
0300 - 25/100
However, if we miss one of these times by even a few minutes, she pays for it dearly for the rest of that day! And often it seems that even if the dose is taken on time, it will set off her leg!
When she was diagnosed, I was in the US Air Force, and many of the doctors she has seen have been military doctors; now, I have retired and we are living in the United Kingdom and we are hoping that her National Health Service (NHS) General Practitioner will agree to allow her to use Mirapex. However, before we ask him, we would like to have as much information as we can get.
Based on the information you so kindly provide on your site, we have proposed to begin with 0.125 mg per day just before bedtime (continuing her Sinemet as above) with an increase of 0.125 mg every five days. However, we would like to know when and how to know the Mirapex is or isn't working and if it is working, how to taper off from the Sinemet.
Thank you very much for all of your wonderful information and we will be eagerly awaiting your comments (on these questions as well as any others you may have). I hope this will also help others out there with the same questions about this dreadful affliction.
Louis M. A.,
Valerie F. A.
For all day RLS, Mirapex is generally taken 3 times (sometimes even 4 times) a day. It is taken 30 to 60 minutes before the symptoms onset (so start as soon as you get up if the RLS is there when you wake up) and lasts about 4-8 hours. This usually affords relief for the entire day when taken 3 times, but some need it 4 times per day for very severe RLS.
Tapering off of Sinemet can be difficult and there is no set formula. You are correct about starting Mirapex at low dose (.125 mg about 3 times per day in your case) and increasing the dose about every 5-7 days. Your wife's case may be more difficult as the best way to tell if she needs a higher dose of Mirapex is to see if she can drop a dose of her Sinemet (and this may cause her problems). If she cannot drop a dose of Sinemet, then keep increasing the Mirapex.
Hopefully, she can slowly decrease the amount of Sinemet pills until she is not taking any. She should increase the Mirapex until she is on the minimum dose necessary to eliminate all her Sinemet. If necessary she can add a narcotic from time to time or even Neurontin.
Sent: Tuesday, May 01, 2001 3:01 PM
Subject: Treatment for substance abuse RLS sufferer
I probably have one of the more extreme cases of RLS. I'm currently 28 years old and have likely suffered from RLS since early childhood. It effects me at a variety of times throughout the day, but as stated so many times before me, mainly at night when I try to sit still. At age 4 I started "rocking" myself to sleep rather violently to the point of keeping my older siblings awake the floor below me. I still do this to this day either purposely(to help fall asleep) or unintentional(when I am asleep). Needless to say I spend many days half awake and physically exhausted, and I have a bed partner that is sick of choosing either the sofa or black and blue limbs.
Just recently I started to get actual help for RLS. It was not easy. I'm chemically dependant and when you walk into a doctor's office asking for some help sleeping...all I got for an answer was "drink warm milk, no caffeine, and quit smoking." This happened 5 times with 5 different doctors until I found a psychiatrist that realized 1) I can be treated without the use of abusable chemicals and 2) I have been "medicating myself" for many years with alcohol and other mood altering substances in order to "sleep well". I did believe that a hang-over was better than trying to function on 1-3 hours of sleep. Now we are starting to run out of options(my doctor doesn't have much experience with RLS).
So far I've tried antidepressants, Neurontin, and trazadone. None which work to my satisfaction. Any ideas(non-abusive) would be appreciated. Take into consideration that many drugs work "backwards" on me(intensifying the RLS symptoms).
Thank you for a VERY informative website.
A very high percentage of RLS patients (even tough ones) get dramatic relief from Mirapex or Requip. They are not addictive or sedative drugs and should be great for patients worrying about previous substance abuse.
The major problem you will have is finding a doctor who will feel comfortable prescribing this new drug that most are not experienced at using (most neurologists will at least be familiar with using the drug for Parkinson's disease, but bring in our RLS Treatment Page so that they will know who to use it for RLS).
Sent: Tuesday, May 01, 2001 6:08 PM
Subject: RLS and Lyme disease
Is there any association between RLS and Lyme....I have both and since I got the Lyme, my RLS has been awful? Lyme doc says he see a lot of RLS. Also because a low grade erlichosis and babeosis sometimes co-infect and both cause anemia, one might be left to wonder about the possibility that RLS is more prevalent in Lyme. Just a thought.
I have had a few patients suggest that their RLS got worse with Lyme disease, but the vast majority of RLS sufferers do not have Lyme disease, so who knows what the correlation is (if any)?
Sent: Wednesday, May 02, 2001 2:33 AM
Subject: Do I have RLS?
RLS seems to be the closest description for an irritating situation I encounter quite often. I would like to describe to the best of my ability my symptoms and thoughts to see if you might have insight (if in fact it does sound like RLS to you). I'm a 36 year old male. I get the sensation most often in the calf area of my legs, though I've also experienced it in my forearms. Most often it is in one limb at a time though I have had it in two simultaneously, either both legs or an arm and a leg.
My first instinct was a blood circulation problem, before I learned of RLS. The feeling comes at night as I relax before bed or more often just as I lay down to bed. The twitch is recurring usually 10-20 seconds apart. The sensation I would describe as the calf (or forearm) muscle tightening and releasing in the matter of a tenth of a second (very quick), and a numbing feeling following the twitch starting strong and slowly dissipating until the next twitch. It's hard to determine the overall duration of the twitching, though often I can remember it lasting for over an hour.
As described on your site, my first instincts were to get up and exercise and/or massage the limb effected, though I don't ever recall this being effective. My reasoning for thinking it may be related to circulation is that I don't remember these symptoms the 12 years I was in the Military, where I exercised regularly and was very active. I've been out of the Military now 7 years though my memory only recalls these symptoms for the last 4 years (the farther I've gotten away from regular exercise). The numbing feeling accompanying the twitch to me in many ways resembles the feeling I would have if I put a tight rubberband around my wrist to stop circulation to my hand though maybe not as severe. Not a pleasant feeling so I don't really want to try it.
I have spoken with my doctor about this and other problems regarding insomnia. I've tried prescription medications (Remeron and Trazadone) and several over-the-counter sleep aids as well - nothing seems to lessen or help with the twitching or my insomnia.
I'm not positive the problem I'm having is RLS though as I read the info on your site, it sure sounds like it. I would greatly appreciate any insight or info you may offer. I would love to volunteer myself for research to help find a cure for this as this is a very irritating feeling, though not painful.
Well it's 4:30 am here, going to go try to sleep again. About the time I'll get to sleep my family will be waking. Please offer any insight to anything you've seen in my letter, I would like to learn more about this.
It does sound like you have RLS (the numbness/discomfort feeling that you describe) and PLMD (the muscle twitching). If you do feel an almost irresistible urge to move the affected limb when the numbness occurs (but not necessarily with the twitching) and movement makes the discomfort go away temporarily, then you most definitely have RLS.
Have your doctor prescribe Mirapex or Requip and you should get relief from your symptoms, resolve your insomnia and get your life back to normal.
Sent: Thursday, May 03, 2001 1:30 AM
Subject: Miserable with RLS
I am 63 years old and have been suffering with RLS for approximately 20 years. I used to walk the floor almost every night while kicking my legs and feet. It has been an absolute nightmare. I am now getting relief most of the time. I am taking approximately 2 hours before bedtime (1) 300 mg Neurontin, (2) .25 Mirapex, (1) #3 Tylenol w/codeine for my RLS. I am also a headache sufferer and take 30 mg of Elavil at bedtime. There are times like tonight that nothing is helping. I took another Mirapex and 1 more of the Tylenol w/codeine and I still cannot even sit down and I am absolutely miserable. My RLS affects my legs, arms, and I can feel it almost through my whole body.
I am also bothered by RLS throughout the day. I just suffer through it during the week because I am standing and moving all day and I can deal with it. The problem is on the weekend when we go someplace. I can hardly go 2 miles without starting to suffer. I get so miserable that I am almost like a raving maniac until I can get out of the car. I am so miserable that I can barely stand it. To me, it is worse than pain. My husband deals with a lot. Do you have any suggestions as to what I can take during those periods?
I found out that RLS is really in my father's family and my mother suffered with it for about 5 years when she was in her thirties. She still remembers it as one of the worse things she ever went through. This is something very interesting -- my mother had a nervous breakdown when she was 40 and was given shock treatment in a mental hospital. She was given shock treatment 3 different times. She never suffered with restless legs again. This information may be important in the study of RLS.
The shock treatment is interesting and may in fact be a novel "cure" for RLS. I doubt that there is anything in the medical literature about this. Your RLS does sound very severe. Once RLS symptoms occur, they are much harder to get rid of compared with taking medication before they occur.
You may be able to get better relief by increasing your Mirapex dose and taking it before (usually 30-60 minutes before) your RLS symptoms generally occur. You can also take the same dose before car rides. Try that (with the supervision of your own doctor) and let us know how it works.
Also, Elavil can cause significant worsening of RLS, so that could be part of your problem.
Sent: Thursday, May 03, 2001 9:24 PM
Subject: Need help with medication dose
I have severe RLS. It starts with my legs, but if I do not have medication it will affect my arms and even other parts of my body. I can almost never sit down for more than a few minutes unless I have taken medication an hour or so before. I have always tried to suffer through a lot of it as to not take too much medication. I never get to sit down and relax. I walk around and even stand and move while watching television. After pacing for about 3 hours I take my medication and wait until I can go to bed. Sometimes it takes from 2 to 3 hours for the medication to work. I finally get to sleep about 1am or 2 am.
I am afraid of taking too much medication because I have a hard time getting it from the doctor. He doesn't know anything about RLS and is reluctant to give it to me (Kaiser Foundation Doctor). If I could get enough medication would it be safe for me to take it before I leave work so that I can sit down and enjoy my evening and also take it before bed? I now take 2 to 3 tablets of Mirapex .25.
I will appreciate any help or suggestion you can give me.
Mirapex should usually become active in about 30-60 minutes (some do take longer), so it is likely that you dose may be somewhat low. It is quite usual in severe RLS for patients to take doses a few times per day (up to 3-4 times per day, spread out evenly).
If your Kaiser doctor is not comfortable treating your RLS with correct doses of Mirapex (or with the addition of other helpful medications), then you have the right to demand a referral to a doctor (sleep specialist or neurologist) who understands RLS and can help you. Kaiser has the duty to find a doctor who can treat your RLS.
Almost every RLS patient can get close to complete relief with proper treatment (even in my experience with many of the toughest RLS cases). You should not suffer in silence when relief is definitely at hand.
Sent: Friday, May 04, 2001 12:37 PM
Subject: Very Low Ferritin
I wrote to you about a year ago regarding my severe anemia being diagnosed in February, 2000. At that time my RLS was the worst it had ever been. My iron was 17 and my ferritin was 4. Then I began a year of 325 mg ferrous sulfate 3x/day with 500mg of vitamin C for absorption, as ordered by my doctor. My ferritin did climb to 10, and iron 29.1 by September of 2000. RLS all but disappeared even with that modest climb.
Then my new doctor put me on Niferex (iron supplement) due to tummy upset in March, 2001. A recent lab test in April of 2001 showed my iron was 26 and my ferritin was 4! I am very discouraged, trying to get my ferritin level to climb at least to the desired 50.
I have had an colonoscopy and endoscopy - all clear. I had even asked that during the endoscopy, they pay attention to the possibility of celiac sprue, which I have learned can interfere with nutrient absorption. None found. No internal bleeding can be found. I eat iron rich foods. I do have type II diabetes. Both my weight and blood sugar control is praised by my doctor. I have not been in the hospital in the last 5 years, nor have I donated blood.
I CAN FEEL SUDDEN EXHAUSTION. Sorry, this is such a long post, but needed to set up my question. My RLS is back and can be described as (moderate). My medications are Glipizide, Metformin, and Lotensin and my iron supplement. I take no other medications.
1. Is there a test for iron absorption abnormality? What is it called?
2. IV iron has been mentioned. Do you have any experience with that?
3. Do you have any other suggestions for me regarding my ferritin increase?
Barbara A., age 66
Some people do have trouble absorbing iron and may not be able to adequately replace iron orally. However, most of these patients are actively loosing blood (GI loss which has been ruled out in your case or menstrual which also does not apply to you). It is quite perplexing why you are still low on iron and I would strongly recommend a hematology consult to find the cause.
To best absorb iron, it should be taken at least 1 hour before eating (on a completely empty stomach). If this irritates your stomach, then you are out of luck for using the oral route. Iron can be given IM (intramuscular) and the IV (intravenous). Iron given my the IM route is very effective, but can cause local irritation at the injection site. About 20% of the patients getting iron by the IV route will have adverse reactions, so this route should be used only when necessary.
There is not test (that I know of) for iron absorption other than seeing the rise in serum ferritin and iron.
Sent: Friday, May 04, 2001 2:32 PM
Subject: Periodic Limb Movement
I have always been a restless sleeper and needed a lot of rest. For a long time my wife has complained that my twitching and snoring disturbs her rest. Last December my doctor prescribed Mirapex 0.25 mg which stopped my nightly twitching cold. He also suggested a nasal strip to alleviate my snoring, but I now have a Noseworks nasal insert which is more convenient and amazingly effective. I also wear a bite plate at night to control my bruxism and often have trouble accidentally biting my lip, cheek, or tongue when I eat.
Could these be movement disorders related to my twitching? Because I was having difficulty with long periods awake at night, my Mirapex was increased to 0.5 mg. I now sleep through the night, awaking briefly once or twice, but I am often very tired when I wake up despite 7+ hours of sleep. Do I need more Mirapex to further quiet the twitching which may be interrupting my sleep, or is it a side effect of the drug making me sleepy?
It is very difficult to say what is making you sleepy as there are several possibilities. I do not start Mirapex for PLMD without getting a sleep study first to see the amount of PLM related arousals. That is the test that needs to be done to see if your need more Mirapex, less Mirapex or even a totally different treatment (such as nasal CPAP for sleep apnea).
Sent: Monday, May 07, 2001 8:51 AM
Subject: Weight gain with Neurontin?
I'd like to know the "normal" weight gain that can be expected with Neurontin? Is this mostly "water weight"? Does it vary by dosage taken? Does Mirapex cause the same problem.?
Karen M. U.
Weight gain is not a common problem with either Neurontin or Mirapex. In studies done with Mirapex some patients gained a little more weight compared to those on placebo, but some lost weight.
Sent: Monday, May 07, 2001 3:09 PM
Subject: Timing of Mirapex for RLS
My mother-in-law is taking 1 Mirapex 0.125 mg in the morning and the same at night. She has reasonable relief with some good days and some not so good. However an increase in dose does not seem to improve matters (two at night and 1 in the morning). Is this likely, or should persevere with an increase in dose (how would you spread this through the day)
You have raised the query in the past (when we found that increased doses of Requip did not help) that maybe she has been misdiagnosed but as far as I can see the symptoms are typical RLS.
As the symptoms had not completely gone, she has recently gone to have a session of acupuncture pins in her finger and foot. About a week after the session she is complaining of severe throbbing in that foot and for the first time in the hand/arm that was pricked. Have you come across cases where acupuncture has triggered RLS?
Many thanks & best regards,
Acupuncture has been known to help RLS in selected cases, but this likely helps only a small minority of RLS sufferers. Most get no benefit and I have heard of only a few cases of worsening RLS with acupuncture.
The timing of Mirapex depends on when the symptoms occur. Generally, Mirapex should be taken 30-60 minutes before the RLS symptoms worsen. If her RLS worsens in bed, then take the extra dose 30-60 before bed. If it worsens earlier in the day, then the dose should obviously be taken earlier.
Sent: Tuesday, May 08, 2001 6:05 PM
Subject: How much Mirapex can I take?
I am 53 and have had RLS since I was in high school. It never did keep me awake until about the last 5 years. About 2 years ago, my great Doctor allowed me to try Mirapex which I actually suggested after reading about it. I started with 1/2 of a .0125 pill but shortly had to go to one, then two and now 3 of the .0125 pills. Occasionally I now have to take 4 of the .0125 pills.
My question is, am I developing a tolerance to Mirapex or is my RLS getting worse? Will the RLS eventually stop getting worse so I can take enough Mirapex to take care of it? How much Mirapex can I take? Except for an occasional strange dream, the Mirapex works wonders. I wake up very rested. Are there any dangerous side affects, long or short term?
Thanks for the great information,
It is possible that your RLS is worsening over the past 2 years and that most likely accounts for your increased need for Mirapex. You started at a very low dose and are still on a relatively low dose, so there is no need for concern. The average RLS patient need between 2-6 of the .125 mg Mirapex tablets per day.
Tolerance can occur with Mirapex, but this generally occurs at much higher doses (8-15 or more tablets per day) so it is unlikely that you are developing tolerance to the drug. At low dose there are few side effects (and if you feel well you have certainly not experienced any) and as far as we know, no long term side effects.
Sent: Wednesday, May 09, 2001 5:02 AM
Subject: My ongoing RLS (Canadian Sufferer)
I am age 64, female and have suffered with RLS most of my life with moderate symptoms as a younger person but gradually worsening after I turned 50. I am grateful that I do not experience much daytime RLS but in the evenings it is getting tougher and tougher. For the past 12 years I have been taking moderate doses of the benzodiazepine nitrazepam (Mogadon) which is only available in Canada, usually 5 mg or sometimes 10 mg before bed. This has provided me with significant relief over the years but the next morning "hangover" and depression, are getting worse. Also, I have discovered (through recent total knee replacement surgery) whilst inadvertently taking a holiday from nitrazapam - I soon discovered that I was (am) very dependant on this drug.
My husband and I have been members of the RLS support group for some years now and some of the recent breakthroughs are encouraging. Also we have recently found a Physician here in small town Ontario who is starting to tune in to the available RLS articles suggested treatment etc.
I should mention that I am a lifelong asthmatic (under control) take levothyroxin for my thyroid and have recently discovered my ferritin level was low (10) and have begun iron supplement medication with some limited improvement.
I keep reading about the recent success of Mirapex and Ultram etc. and would like to wean off of nitrazepam. What would you recommend? Also if I try a new course of medication could you give us some guidelines for the tapering off my benzodiazepine dependency.
Looking forward to hearing from you,
Gratefully, Pat K
All benzodiazepines can be addicting and tough to wean down. The best strategy is to slowly decrease the dose (you can cut the pill into quarters, if possible) over 2-3 weeks. If insomnia gets severe, a non-benzodiazepine sedative can be used on an intermittent basis. In Canada, you have Imovane, which is similar to our Ambien (see our RLS Treatment Page for more information on this drug).
Mirapex is the best drug for RLS and should eliminate your need for any other drugs. You probably will not need Ultram, but if you do, it is best used on an intermittent basis. It is a good idea to start the Mirapex first so that you can eliminate your RLS symptoms which should help decrease your need for Mogadon.
Sent: Thursday, May 10, 2001 12:48 PM
Subject: Treatment for RLS
I had this problems years ago and I went to a regular foot doctor. He asked me if I wore a lot of tennis shoes that had rubber type inner soles. I told him I had a pair to match all my shorts and other sport clothes and he said that is my problem, that your feet should never be near rubber type material.
I took his advice and I'm completely cured. Thought you would like to know this because because it might be some of your problem. Try it and see if it helps your problem. He also told me rubber is for tires and not feet.
Sent: Saturday, May 12, 2001 8:26 PM
Subject: Great Report
Just flipped through all your wonderful information. There is so much and so well organized. My compliments to all involved in setting this up. I am a fellow sufferer from Stowe, Vermont. Have subscribed to the NightWalkers news letter almost since its inception. Was very interested in the news on Mirapex, my medication now for 2 years. It is great and was so happy to read more about it and how it effects a person.
Also happy to know I can increase my dosage a tiny bit to try to get a little more relief. I take only one 0.25 each day about 4:00pm and it get me through till about 10:00pm and then I start getting jumpy. Maybe a 1/2 dose about 8 or 9 would help out as I like to stay up till midnight so that I can usually sleep a good 6 hours but not much more.
Yes, I also have nor RLS when on the computer or playing my musical instrument. I cannot bear to read the evening newspaper after dinner, it aggravates the hell out of me even with the meds. I'm sure you have heard all this but it is nice to talk about it with people who know what we all go through. Thank you, I will be going to this site quite often. I would like to read some of the personal letters.
An extra 1/2 pill would likely help the 10 p.m. RLS problems. If you wish to read or do other things in the evening that aggravate your RLS then an additional 1/2 pill about one hour before would also be helpful (check with your personal doctor before taking any extra Mirapex pills).
Sent: Saturday, February 24, 2001 8:31 AM
Subject: Neurontin and Permax use for Restless Leg Syndrome
I have suffered many years with this problem. I have tried all sorts of solutions. I finally found a doctor who knows about this problem. He recommended Neurontin and Permax. I am afraid of any prescribed medicines that will cloud my brain thinking capacity such as Elavil did, which I stopped when I realized that this was happening. Do I have to take both of these medications together? I have been taking only Neurontin for the past two weeks and have been getting very good rest.
Should I continue this or should I also take the Permax? I want to take only that one or two that will allow me to think clearly. Will you please advise me since you know my brain ability is very important for me. I am 70 years old and active. I am a professional artist painter with much creativity undiscovered.
Mrs. John H.
Either Permax or Neurontin are good choices for treating RLS. Normally they should be used alone and if they work well, no other drug need be added. If a high dose of one of these 2 medications are needed, then an additional one should be added.
Neurontin may cause sedation in some patients, but many have no side effects that affect the brain. If you feel that you are doing well on this drug, it would be best to continue it and not increase it or add another one.
Sent: Sunday, May 13, 2001 8:35 PM
Subject: Attacks of Restless Leg Syndrome?
I've had RLS for about 20 years. I've tried Sinemet, Requip, and Klonopin. Nothing helps. I have RLS "day and night". I just got over a 2 day attack leaving me weak in the legs, shaky legs, and pains in body of my hips,across the pelvis, and lower back.
I go to a neurologist for Epilepsy and RLS. She is baffled that when I get the attacks it is all day, all night. Can you help me?
It is somewhat unusual to have "attacks" of RLS that last for 2 days or so then leave you with pain in your body and shaky limbs. I would question whether the diagnosis is correct.
If all your problems are really from RLS there may be aggravating factors such as drugs (especially antihistamines in cold remedies) that you may be taking that could cause this problem.
A Reply from Joyce
Sent: Monday, May 14, 2001 7:13 PM Subject: Re: Restless Leg Syndrome
Thank you for your reply. I do not take antihistamines. I forgot to tell you I am 56 years old. Today Monday 5-15-01 I've had pain in my hips, legs, and shakiness like you would'nt believe. I went to work feeling like I was in a cloud. My all day all night RLS really did a number one me. If this is not RLS, what neurological condition could it be? Besides epilepsy, I've had Bells Palsey for 14 years. Thursday I go for an MRI with the dye and Friday I go for an MRA with the dye. Will that tell anything about RLS?
There is no test for RLS as all the tests are normal in this disease (except for low serum ferritin levels which occur in some patients). It is only diagnosed by the clinical symptoms as follows:
Unpleasant sensations in your limbs which occur at rest and cause an almost irresistible urge to move the affected limb and the symptoms are temporarily relieved by moving the limb. The RLS is generally worse in the evenings and better in the early morning.
If the above fits, then you likely have RLS.
Sent: Sunday, May 13, 2001 7:56 PM
Subject: New to RLS?
I have been taking 0.25 mg of Mirapex after dinner and again at bedtime since 03/2001. It is now 05/2001 and I am getting some much needed relief. RLS is a very new subject for me as I was just diagnosed. I previously thought I was just crazy. I would like to know if weight gain is a common side effect? I feel much better than I used to but it seems like some days I just cannot get enough to eat. My stomach "rumbles" and '"growls" with an hour after I eat a meal sometimes.
I am also having a problem with depression. I am 30 years old and usually a very happy person but lately I find my self very down and out. It has been so bad this week that I have stated smoking again. I was smoke free for 5 years. Are there any side effects with smoking besides the fact smoking is bad for you? I would really appreciate any response.
Corpus Christi, TX
Weight gain is not a common side effect of Mirapex, but anything is possible. You might want to change to Requip, which is similar but may have a different side effect profile.
Smoking, which of course is not good for, has no interaction with RLS or any of the RLS medications.
Sent: Monday, May 14, 2001 9:46 AM
Subject: Caffeine worsening RLS?
I am sleeping better than ever. What was killing me was coffee. I quit drinking it 4 weeks ago and I am able to sleep only using Sinemet. No more of the other prescription drugs that I have needed until recently.
I could not believe coffee could affect me this much. I am feeling like my old self again.
Caffeine, is many patients, can be a very potent drug. We often forget about it because of it ubiquitous nature and thinking of it as a natural part of our diet rather than a drug that can affect our nervous and cardiovascular systems.
Privacy in this day and age of electronic records may quickly become a big problem for doctors and patients.
Sent: Monday, May 14, 2001 3:02 PM
Subject: RLS victim better with calcium
It was so nice to find your site on RLS! I am a 40 year old female that has a mild case of RLS but I can still relate to all of the feelings that have been written in by others (standing in the back of the theater, in the aisles of the airplane, up numerous times at night, stopping the car to walk, etc., etc.). I experience probably my worse episodes in the car, traveling with my family. My husband mentioned just yesterday that I should go on-line to see what else I can do. I am taking 1200 mg of calcium a day, which was recommended by my chiropractor. I think this is helping. I still have episodes, probably only a couple a week, though.
Annette B: you are the only other person that mentioned calcium on the entire web site! I think I'm going to try to add the magnesium, too. My dad has RLS and he tries to stay away from caffeine and artificial sweeteners, too. We call it the "heebie-jeebies". I also have been diagnosed with hypothyroidism - which I found mentioned as a possible related illness. It seems that many of the things I enjoy or consume (chocolate, sugar, coffee, alcohol, equal) are mentioned through out the different notes from people. I hate to think of giving those things up, but if adding the magnesium doesn't help I guess I'll start trying those!
Thanks to everyone for sharing,
Julie O in South Dakota.
Good luck with trying magnesium. It is possible that it could help, but most patients do not benefit from mineral or vitamin therapy. Diet changes may have a better chance of helping (trial and error is needed to figure out what helps and what hinders).
Sent: Wednesday, May 16, 2001 5:43 PM
Subject: Full body RLS?
Have you ever heard of full body RLS that causes actual small fiber nerve loss in epidermal on skin punch biopsies? My physician says this could be RLS? The neurologists call it "pain syndrome"...in other words no one know through differential diagnosis what's going on. However, I have never heard of RLS causing full body dysesthesia and acute allodynia 24 hours a day and effecting small fiber nerves everywhere (biopsies were done distally and on upper body showing small fiber nerve loss in the epidermal but not dermal...
Any input sincerely appreciated. I personally never heard of RLS effecting the entire body have you?
There is no known biopsy correlation with RLS. The problem is that we do not have an association with any abnormal pathology to help diagnose RLS. Therefore, it is simply speculation on the part of your doctor to say that the nerve fiber loss on the punch biopsies could be from RLS.
RLS may affect many different muscle groups at the same time but does not affect the whole body at once.
Sent: Friday, May 18, 2001 11:35 PM
Subject: ethnicity link?
Great website. I have a quick question. Does RLS occur more often in a specific ethnic group? I am thinking possibly of those with English/Irish descent?
There is no racial/ethnic link but the disorder clearly is genetic and passed on in families.
Sent: Saturday, May 19, 2001 2:35 PM
Subject: Restless leg
What dosage of Requip should I take? I'm having a problem finding another doctor. The one I had originally dismissed me to my primary doctor who won't prescribe the Requip I was on. That's a HMO for you!!! I'm taking Requip 0.25 in the afternoon with Vicodin, and two tablets at night with Vicodin. I try to keep the Vicodin down to 3 a day and Ultram to two times, although the Ultram doesn't help much.
I have RLS symptoms during the day but especially around 8 pm it gets worse. How much Requip should I take? I also wake at night around 3 or 4am and sometimes take another Vicodin just to sleep. Sleeping pills make me to drowsy during the day so I won't take them. The other meds are enough. I also take a beta-blocker for a heart irregularity, so am afraid to take to many drugs that slow the heartbeat and also a degenerative disc disease in the back and take Naprosyn which also causes drowsiness.
I hope I haven't sounded to muddled in my questions but would really appreciate some help in sorting out all these drugs.
Your dose of Requip is still on the low side, so there is room to increase it (only under the supervision of your own doctor). I generally have patients increase the each dose by 1/2 or one tablet every week until RLS symptoms are under control. If you need more than 10-12 tablets per day then Requip may not be the correct drug.
Sent: Sunday, May 20, 2001 12:12 AM
Subject: Follow up of quinine for RLS.
Thank you, and continue to keep up the work spreading the news about quinine, easily obtained in tonic water. Even if only 5% of us are finding relief, then it is still 5%.
I last wrote you June 5, 2000, and you said to check back with you periodically to tell you if quinine was still working. Ninety-five percent of the time, it is working great! Much better than most drugs I've tried.
Please believe me when I say there is 100% surety I have RLS. I very, very seldom have leg cramps (twice in past 4-5 years I would say). For my RLS, six to 8 ounces of tonic water at 7:30 p.m., and a few more ounces at bedtime at 9:30 or 10:00 pm USUALLY prevent all RLS symptoms. If RLS has just began, 20 minutes after drinking the tonic water the RLS drains away, at times so significantly it literally can only be described as like water draining from a pipe.
The times tonic water won't work is when the RLS comes on when I've forgotten to drink the water at or right around 7:30, and/or if the RLS comes suddenly and heavily. Then it's pace the floor, play solitaire as fast and hard as I can, and take very pill I can find. And, as tonight, check your website for what's new.
Thanks so very much for all you all do,
Thanks for the follow up letter. In general, less than 5% of RLS sufferers will be helped by quinine, but as you say, it would be certainly worth it for the ones that respond to use it.
Sent: Monday, May 21, 2001 8:29 AM
Subject: Need some advice
I am a 54 year old college professor who has suffered from RLS for approximately 12 years. The condition has worsened markedly over the past three years. My doctor originally prescribed Klonopin for me, but the drug made me feel woozy the following day. While taking Vicodin ES for pain control following surgery to have a birthmark removed from my face three years ago, I found that I experienced complete relief of all RLS symptoms on those nights when I took 1.5 Vicodin ES tablets. This relief was consistent for 3-4 nights immediately after my surgery, at which point I quit taking Vicodin altogether. This dosage of hydrocodone is about 12-13 mg.
I explained the situation to my doctor and he was willing to prescribe Vicodin ES to control my RLS at a dosage of 1 tablet per day (7.5 mg of hydrocodone). As a result, I receive a prescription for 30 tablets per month. Because I require 1.5 tablets at night to suppress the RLS sensations, I have enough medication for 20 nights per month; the other 10 nights I suffer. I have not had the courage to explain the need for the higher hydrocodone dosage to my doctor for fear he will discontinue the Vicodin altogether. I don't want to risk giving up 20 nights per month of reliable relief and a good night's sleep. However, I live in constant anxiety each month as the 10 nights of suffering draw closer.
I am convinced from reading the stories and medical replies on this site that I may be able to find consistent relief throughout the month if I take one Vicodin ES in combination with a low dose of Requip (maybe .25-.50 mg each night). My doctor has been reluctant in the past to consider drugs typically prescribed for Parkinson's Disease. I have suggested Mirapex and Permax in the past, and he has indicated he prefers that I control the problem with Vicodin.
I have not developed a need for increased dosages of Vicodin, but there is no doubt that 12 to 13 mg of hydrocodone at night is the threshold dosage for me to obtain relief. That is a lot of Tylenol, and I am worried about the long-term impact on my liver. The bottom line is this: I am confused as to what to do at this point, and I am fearful of losing my ability to effectively perform my job. Ten nights per month of 2 hours sleep per night is bad enough; add in the anxiety of waiting for those nights to arrive and the situation is very disruptive to my personal and professional life.
Can you offer me any advice? Thank you for your consideration.
The answer is very simple. Mirapex or Requip are much better choices for RLS. They are non-addictive drugs and safer than Vicodin. With either of those two drugs, you will likely eliminate the need for any narcotic medication. If your present doctor will not prescribe these drugs for you (out of ignorance, which is definitely not a valid reason), then he should refer you to a doctor who can prescribe them for you. If not, you should find a doctor who will.
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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