If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Monday, September 03, 2001 12:06 PM
Subject: symptoms for "restless legs"
I suffered off and on with this "restless legs" syndrome since I was a child. I am not 45 years old. Two months ago, I started eating according to my blood type (O) as recommended in the book: Eating Right 4 Your Blood Type by Peter D'Adamo and noticed that after I cut out all corn and potato based products that my twitchy, jumpy, restless legs STOPPED!
Of course, I have had to refine the type O diet to exclude gluten products because of skin sensitivity to these products but I have never felt healthier, am taking off excess weight s-l-o-w-l-y, but felt I should pass my wonderful news on. Eating correctly beats having to take drugs any time!!!!
My 13-year-old son also suffered from the same "restless legs" syndrome and his twitching has also stopped!!!
Regards, Naomi C.
There are a lot of RLS sufferers who find that what they eat does affect their RLS symptoms. This varies considerably amongst RLS patients. It is interesting that the blood type diet has helped you. It is likely that this diet has eliminated a food which may have been bothering your RLS.
Sent: Monday, September 03, 2001 9:37 PM
Subject: Restless Legs/Methamphetamine addiction
I am a community health nurse working in the field of addiction. Mostly methamphetamine addiction. Recently when I conducted a health class at a treatment facility all the women said they had RLS and it was interfering with their sleep.
Some of the women had been on SSRI's but not all of them. Most of the mental health prescribers in my area prescribe SSRI's for the depression that these women have from their damaged dopamine neurons, however SSRI's decrease dopamine even more and make these women feel worse. I've seen many relapse after going on SSRI's despite being "clean" for a long. It would only make sense to try them on a dopamine agonist for their RLS. Most practitioners are not even asking them if they are suffering from RLS and most of these addicts who are trying to recover don't realize it is something that can be treated.
I read the comments from another RLS sufferer who has increased symptoms after eating sugar. My RLS symptoms are worse after eating sugar or a lot of carbohydrates. That could be because sugar and carbohydrates increase serotonin. Serotonin generally has an inhibitory effect on dopamine. Dopamine seems to help RLS.
The SSRI class of antidepressant medications can have quite varied effects on RLS. While most patients experience worsening of their RLS symptoms with these drugs, a significant minority (20% or more) actually improve. It is very difficult to sort this out.
Although sugar and carbohydrates do worsen some RLS sufferers, the majority do not seem to have this problem. Again, it is very difficult to sort out the relationship of most things to RLS (including dopamine and serotonin).
Sent: Tuesday, September 04, 2001 5:30 PM
At as recent meeting of our Portland RLS Support group, the speaker, a neurologist, included the comment that Symmetrel was showing promise as a treatment for RLS. I see that you have it listed at the end of the Parkinson's' drugs. Is there anything new on this medication since you did the write-up?
Does it join the trio of Permax Mirapex, and Requip in terms of rotation? Is it likely to be effective for PLMD also?
Symmetrel should work reasonably well for RLS. Most RLS specialists (myself included) have so much success from Mirapex/Requip that we rarely, if ever, have to resort to Symmetrel. I am aware of very little experience with this drug for RLS.
Sent: Thursday, September 06, 2001 11:00 AM
I have a question regarding PLMD. I have noticed that it seems that most PLMD sufferers do not wake up from the twitching or jerks during the evening. However some wake up immediately when they fall asleep, and thus have situations where they are up the entire night. Is it a more serious condition for those who wake up immediately? I also wonder how a sleep study will diagnose PLMD for the person who wakes up immediately upon falling asleep during the study, if they never are really sleeping for more than seconds at a time?
Lastly, what is the success rate for treatment for PLMD for the persons whose PLMD does not let them sleep through the night, and they have repeated, immediate awakenings?
Most people with PLMD do not know that they have the problem unless it is pointed out to them by their bed partner. It often does not even interrupt sleep or cause any sleep disturbance other than to the bed partner.
For those who are affected by PLMD, the most common problem are micro-arousals that prevent deep sleep so that the result is that these patients sleep for normal or long periods of time but end up sleepy and tired during the day. These patients generally have severe PLMD so that they quickly become sleep deprived and fall back asleep after the micro-arousals from their PLM's.
The patients who arouse early in the night from PLM's then can't get back to sleep generally have a much milder form of PLMD, but are more similar to chronic insomnia patients who do not sleep well at night. These patients are very tired in the daytime but have trouble sleeping during the daytime despite being sleep deprived.
Treatment should be easy for the PLMD patients who arouse early in the night. A combination of Mirapex and a sleeping pill (Ambien) should take care of the problem.
A Reply from Kevin O.
Sent: Friday, September 07, 2001 12:09 PM
Subject: Re: PLMD
Thank you very much for your informed and timely response. I just have some follow up questions. In terms of diagnosing the PLMD where the person is waking up immediately upon falling asleep, how does the sleep study aid in diagnosis if the person doesn't go to sleep? I have been taking Klonopin (I am going to talk to my doctor regarding switching to Ambien) for just over a week and I get to sleep and stay asleep with no problems (my wife tells me I don't twitch or move at all once I fall asleep).
Would I take the sleep test while I am on the Klonopin?
It is more likely that a jerk that wakes someone up just as they are falling asleep is a hypnic jerk, rather than PLMD. Hypnic jerks occur during the transition from wake to stage 1 sleep. They are whole body jerks that often arouse the sleeper as stage 1 sleep is very light sleep and takes very little to change to wake.
PLMD are series of limb jerks occurring more in stage 2 sleep which is deeper sleep and arousals do not occur as often. A sleep study can easily differentiate between hypnic jerks and PLMD. Sleep tests are sometimes done with the patient on Klonopin or other sedative as these do not usually abolish all the PLM's, but rather decrease the micro-arousals from the PLMD.
Sent: Thursday, September 06, 2001 9:36 PM
Subject: RLS related to muscle fasciculation?
I am a 32 y.o male with restless legs syndrome. I have also been diagnosed with benign fasciculation syndrome. My legs twitch constantly, but symptoms seem to worsen at night. Do you know of any connection between these two disorders. Also, I have found that Ben-gay helps to mask the sensations a little bit.
There is no known connection or relationship between these two disorders.
Sent: Saturday, September 08, 2001 8:55 AM
Subject: Seems pretty hopeless
I just had to send a quick note because I feel for so many people that suffer from this condition. I am a 47 year old male who has had some symptoms of RLS since I was a teenager. Of course, then I had no idea what it was.
I'm not going to launch into a long story about what it feels like and everything I've tried to relieve it because there is great variety in how people are affected and in what seems to work for different people. I believe each person has to try to find what works for them. I will say I've tried almost everything at one time or another and only one thing has ever worked so far. And I do have a concern about that. Only one thing other than getting up and moving around that is, but moving around doesn't exactly promote sleep!
What I learned was that I was sleep deprived because of my RLS. The specialist said to stop smoking and reduce stress in my life and it might go away. I did both, but it didn't go away. By that time I had learned about some medications that seemed to help some people. I was reluctant to go that route and since my RLS seemed to come and go, I was coping. After a couple of years, it wouldn't go away anymore and I decided that the affects of sleep deprivation were not bearable.
I was very lucky in the sense that the first medication I tried, bromocriptine (Parlodel), worked well. After taking it every day for about 3 years, I again became concerned about taking constant medication. I also found that it didn't always work anymore. My doctor said let's try something else. He gave me a strong muscle relaxant which resulted in the most tortuous night of my life. I walked around the house all night long without being able to totally wake up.
I'm back on the bromocriptine. I've had to raise the dosage a couple of times for it to continue working. In the last couple of months, I've developed low blood pressure to the point that I will often black out when going from a sitting to a standing position. I read that low blood pressure is a side effect of this drug.
I should add that except for the RLS, I am in very good health. I am also in very good shape. I work out faithfully with weight training and aerobic activities. I eat healthfully. So..... do I try a different drug? Do I continue with something that works and hope I don't have to continue raising the dosage? Do I not worry about the low blood pressure and other possible adverse effects of long term medication?
One thing I know from experience is that there isn't much more debilitating than serious sleep deprivation. I'd like to know how close we are to finding out what causes this condition so we can do better than hit and miss treatments. What's so frustrating is that I'm so healthy and fit in every other way that this seems minor. But those many thousands of you who suffer from it, even in its milder forms, know it can be anything but minor. I feel like I'm doing everything right and yet, from everything I've read or heard, it's just likely to get worse.
There, I've vented. I was moved after reading so many letters,
Gordon from Canada
Parlodel (bromocriptine) does work for RLS, but not as well as the new Parkinson's disease medications. You seem to be at a level of Parlodel that is clearly limited by side effects to properly treat your RLS.
A change to Mirapex or Requip should relieve your RLS with minimal if any significant side effects.
Sent: Sunday, September 09, 2001 2:49 AM
Subject: Restless leg and hip
I am a 49 year old female and I suffer from RLS and do I suffer! I can't remember the last time I slept through a night. It usually starts up as soon as I get into bed and get relaxed. It makes me feel like I'm going to loose my mind. The other night I told my husband I think I would rather have my leg and hip cut off then live with this horror any longer. He said then it would just move somewhere else. I agreed.
I just don't know how much more I can take. My doctor won't prescribe anything for me as I am on three different blood pressure medications now and an antidepressant called Serzone 400 mg a day. He does not want to add anything else. I feel like screaming at him cause I am in desperate need of sleep. I've cut out caffeine , chocolate, I've exercised, taken hot baths which will take it away for a while. I'm in the tub but as soon as I get into bed it starts up again.
If your doctor will not prescribe RLS medication (Mirapex/Requip) for you, then you need to find another doctor who will help you. You can either find another primary care doctor or go to (get a referral if necessary) a specialist (sleep specialist or neurologist) to get the medication that you need.
There is no reason to suffer as you have been doing when relief is available. There is little concern about interactions with your blood pressure medication and the RLS medication. The Serzone has a significant possibility of worsening your RLS (you should be able to tell how your RLS responded to the medication after it was started.
Good luck and don't put up with anything less then complete relief of your RLS symptoms.
Sent: Sunday, September 09, 2001 8:35 PM
Subject: Oxyflow for rls
For any suffers out there of rls, I have found a cure for myself. I bought one of those oxyflow machines from home shopping ( I understand they have discontinued selling them due to a lawsuit by the Chi Machine which is the same product)
I hadn't been able to sleep for months staying up until 2 or 3 A.M., now i use the oxyflow for 10 minutes, and I have no symptoms and fall right asleep. I know the Chi Machine has a free 14 day trial. Maybe someone would like to check it out....hope this helps
We will pass this information on to our readers and see if any others benefit from your treatment.
Sent: Wednesday, September 12, 2001 1:58 AM
I have had RLS for many years and experienced increased discomfort after Knee surgery several years ago. Before the surgery I was able to treat it with topical creams that were made of a pepper seed derivative. As the symptoms worsened I sought medical treatment and was given Klonopin, then later Neurontin. Both of these work with the Klonopin being the most effective.
I also have mild ADD and take some doses of Adderall in the morning. Am I getting myself into a bad habit by taking "uppers" in the morning, followed by "downers" in the evening?
The ADD may have been due to poor sleep from RLS (+/- PLMD). This problem should be better with the correct RLS medication. Klonopin is a "downer" and can cause daytime sleepiness in a large percentage of patients who take it. Changing to Ambien might enable you to do better and possibly not even need Adderall or any daytime stimulant.
Sent: Sunday, September 16, 2001 12:26 PM
Subject: RLS and Ultram/Paxil
I have recently been put on Paxil 10 mg. and Ultram 50 mg (my doc gave me samples to try). My RLS has gotten worse. I've read the Paxil can do that? The Ultram I have only taken a couple of times and it appears to make me nervous and have no other effect. I was very disappointed because I had heard Ultram had helped a lot of RLS folks. Any suggestions would be appreciated.
Paxil and other SSRI type antidepressant medications can make RLS worse. If you really need to take the Paxil, then Mirapex or Requip to treat your RLS may be necessary.
Ultram does help a lot of RLS sufferers, but you seem to have side effects that preclude its use.
Sent: Sunday, September 16, 2001 7:16 PM
Subject: Neurontin for RLS?
Thanks for replying to my message. I did have a question about a medication I think was in Group 4, if I recall, called Neurontin (anti-spastics or spasmodic drugs) that they said they were having some really good results from. Is there any information on the dosage required to achieve results?
I ask because my fiancée is taking Neurontin 400 mg. three times a day for other reasons. She gave me a few and I tried a single 400 mg capsule for 2 or 3 nights but still had RLS pretty bad. Is a higher dosage required?
Neurontin is an anti-seizure drug that is helpful in many RLS patients. The dose that is effective can vary considerably from patient to patient. Most doctors start at 100 mg and work up to higher doses.
Some patients have required doses as high as 3000 mg per day (in divided doses), but the higher doses tend to cause side effects (sleepiness, etc.) which limits its use.
Sent: Monday, September 17, 2001 6:58 PM
Subject: RLS vs. PLMD
It's been a while since I have written, but I still enjoy keeping up with this site and the valuable information you and other letter writters provide.
More and more I wonder if I suffer more from PLMD than RLS. That restless feeling in my legs is really sporadic-maybe once or twice every week or so, and my fatigue levels don't really always correspond only with when I have experienced RLS. HOWEVER, my husband has noted that I do frequently move my legs at night (though I am not aware unless he says something out loud-which instantly wakes me up). Is this one of the differentiating criteria?
Would it be helpful to have a sleep study done? In a way, I would like to have my suspicions confirmed, but I am not sure it would make any difference treatment wise. (As far as other possible causes of fatigue, I have regular checkups and lab work, and no new problems have surfaced.) Currently I take Ambien 2.5 in the middle of each night(and frequently Tylenol at bedtime). I am always trying to scale back on any medication to monitor the need/response.
I dislike the dependence on a medication to "fall asleep", and usually can fall asleep without a problem due to fatigue, so I wait to take it until I wake up (cause unknown) an hour or so after I fall asleep. That way I sleep the usual 4-5 and half hours after the Ambien until time to get up. (If I take Ambien right at bedtime, I always wake up 4-5 hours later anyhow, and have to take 2.5 mg again, and by that time I only have 2-3 hours until time to get up, which leaves me a bit hung over.
Just for the record, I have already tried Mirapex, but the side effect of insomnia made it not helpful to me, although I was not using Ambien at that time. (The Mirapex had been preceded by trials of Darvocet and Sinemet recommended by my neurologist.) Also, we have moved this summer, and now I will need to find a new doctor to follow me...would another neurologist be a good choice...or might it be profitable if a GP order the sleep study first? Also, is there any research being done on these disorders, and where could I read such (if it exists).
Thank you again for your help!
Most PLMD sufferers are not aware of their nocturnal leg kicking unless they are informed about their problem by their bed partner. Some PLMD patients have lots of leg kicks, but few arousals from these kicks (the bed partner is much more affected than the kicker).
Other PLMD patients have lots of arousals (most of these are micro-arousals lasting 1-3 seconds) from their kicks and are not even aware of the sleep disruption that is occurring (other than having excessive daytime sleepiness from their poor sleep). A sleep study is necessary to document the amount of arousals occurring from the PLM's to help guide therapy.
Even though Mirapex caused insomnia, there are other medications such as Requip and Permax that may resolve the problem without side effects. Neurontin may also be helpful. Sedatives such as Ambien do not always eliminate the PLM's but rather may decrease the amount of arousals from the PLM's.
A GP, neurologist or sleep specialist can order your sleep study as long as they take your problem seriously. There is research being done on these disorders, but nothing very practical that would help you at this point.
Sent: Tuesday, September 18, 2001 2:44 PM
Subject: RLS and fibromyalgia treatment
I have had multiple lumbar back surgeries and am having another in November. I am saying this because I never had any symptoms of RLS until the back problems. I also have fibromyalgia and never had that before the back problems. I think there is a correlation to all of these problems. I just have not figured them out yet, unfortunately.
I have gotten a lot of relief. I have been trying different medications for 10 years. I take Tegretol and 25 mg of Elavil every night. These medications together have helped me more than anything else. I did not see anybody else mention Tegretol and I was wondering if anybody has tried it. I forget what the dosage is but they prescribed for me to take two at bedtime and one in the morning. Well, I only take the two at bedtime with the Elavil and it seems to do the trick.
I know that Elavil will make a lot of people sleepy but it does not take very long to get used to it. It made me really sleepy at first and now I have been taking it for 1 year and I promise you I am doing much much better! Sleeping a lot better which in turn helps my back problems because our bodies heal themselves during the deep sleep stage. Most fibromyalgia and RLS patients do not ever get to the deep sleep stage. I know these meds may not work for everybody, but at least it is worth a shot.
Also, I was wondering if anybody else out there experiences any itching. The only times that I do not sleep anymore is when I am itching all over. I mean it is awful - you cannot sleep because you cannot stop scratching yourself. It happens in the day too but much worse at night. I tell myself not to scratch because that will just make it worse, but I cannot do it. I have tried everything including Benadryl, Atarax, hydrocortisone creams, etc. Nothing seems to work.
Back problems and especially back surgery are common triggers for RLS and this likely explains the timing of your RLS troubles.
Elavil is a medication commonly used for fibromyalgia. It more often makes RLS worse, although a very small minority of patients will get better with Elavil. Tegretol has been used with some small success in RLS (it is discussed on our RLS Treatment Page).
Itching is not generally part of RLS or fibromyalgia and may be a separate problem. Try to stay away from the antihistamines (Atarax, Benadryl, etc.) as they almost always worsen RLS.
Sent: Tuesday, September 18, 2001 11:14 PM
Subject: RLS worsened by Zoloft?
I have suffered a mild case of RLS for the last couple of years. I would only be bothered about four times a year and the episodes would last about four days (actually nights). In late January my Ob/Gyn put me on 50 mg of Zoloft to treat PMS and this didn't seem to affect my RLS. Unfortunately, for the last two months, July and August, I have been bothered with RLS almost nightly. It is driving me crazy and I am losing a lot of sleep over it.
Could the Zoloft have anything to do with it? I consume no caffeine, exercise for 45 minutes only three times a week. I can't think of a single thing that has changed in my life to cause the RLS to become so constant except maybe the addition of Zoloft. Any suggestions???
It is possible that the Zoloft is the cause of your RLS worsening. The reason for the delay in onset of the exacerbation your RLS is hard to explain, but we do see this happen. The way to prove that Zoloft is the culprit would be to stop the Zoloft for about 1-2 weeks and see if the RLS decreases. If there is no improvement then consider going on Mirapex or Requip.
Sent: Wednesday, September 19, 2001 1:41 AM
Subject: IV iron
I'm trying to find out if IV iron is being tried for RLS? Can you tell me at what hospital, and the success rate of this treatment?
IV iron therapy is only being done on an experimental basis by Dr. Allen. Their data was presented in a poster session at the recent sleep meetings (June in Chicago) and seemed somewhat promising. There is a concern that IV iron therapy can recent in bad reactions (including sudden death).
Sent: Wednesday, September 19, 2001 11:31 PM
Subject: I found a cure for my RLS
For the past two years Ive suffered horribly from restless leg syndrome. I know from research that there isnt really an answer and Ive tried all the suggested solutions. But I have good news! I recently came up with something that fixed mine and I want to pass it on.
First, some background: The past few months I've been doing a lot of methodical plotting against this thing. It had gotten so bad I was up several times a night and, at times, it seemed as if my whole body was engulfed in that awful creepy sensation. I thought there could be many reasons: dehydration, vitamin deficiency, lack of exercise, being overweight, and sitting too long in chairs that constrict blood flow. I experimented in all these areas, deleting one after another, except for being overweight.
Then, in the middle of the night recently after a serious attack, I pondered the whole thing and added to my list referred pain from the sciatic nerve. That night I realized that awful feeling wasn't just in my legs but that nerve in my hip also seemed to be hurting. Not much, just a twinge.
The past two weeks, every time one of my legs started to do their thing in the middle of the night I used my knuckles to massage the sciatic nerve in a circular motion. After just a minute of massaging, it all goes away and I sleep the night away. In fact, I have gone several nights without any symptoms, which is a miracle because it had been going on nightly for at least two years. I feel like I am finally getting caught up on my sleep. I feel like there is hope.
I do know, from losing that 40 pounds a couple of years ago, that my symptoms went away when I was more in the weight range I am supposed to be. It would be interesting to note how many sufferers are overweight. Actually, being overweight could go along with my sciatic nerve theory. For those who dont know, referred pain is pain that is in one place but felt in another. One common instance is the jaw/shoulder ache of a heart attack.
I am interested to know if what I am doing works for anyone else.
There is no known relationship between being overweight and RLS. In my experience (with a lot of RLS patients) I have found a normal distribution of weight in my RLS patients.
There is also no known link with sciatic problems and RLS. Some RLS patients do have neurological problems, but they are generally more subtle and harder to diagnose. Treating the neurological problem has generally been unsuccessful to help either the RLS or the neurological problem.
We will put your letter on our site and see if others have had similar experiences or benefit from yours.
Sent: Friday, September 21, 2001 8:38 AM
Subject: Guaifenesin and RLS?
I have been taking Robitussin expectorant with guaifenesin (nothing else in it except fructose)) for a cold. My restless legs (severe) are much better and I've been sleeping very well, all night!! I've heard that guaifenesin helps fibromyalgia. Have you heard of using it for restless legs? I am so surprised that it is helping my legs to such a degree.
There is no known relationship of guaifenesin (helping or bothering RLS) and RLS.
Sent: Sunday, September 23, 2001 7:02 AM
Subject: Restless legs Syndrome & Magnetic Bands
I tried Xanax, Ibuprofen, Aspirin, Leg-a-Trin, Cold Packs and nothing worked. Then I tried the Futuro Magnetic Bands that I got from the drugstore. I wore one on each leg just above the ankle and I left it moderately loose so that I didn't interfere with the normal blood flow.
I don't mind saying that I was very apprehensive when first lying down to sleep. I waited for the usual dull ache to start and it didn't come. After about an hour I just went to sleep. When I woke up in the morning my legs actually felt energized. I don't know why the magnets worked and I don't much care. I'm just happy to be able to sleep normally again. I don't know if it will work for you, but I felt it was important to share my experience.
Thanks for sharing your experience from Magnetic Bands for you RLS. We will see if others can benefit from your treatment for RLS.
Sent: Sunday, September 23, 2001 6:35 PM
Subject: RLS and Post-Surgical problems
What is best to be given following a heart catheterization during the 8 hours when you can't move your legs. I had one in Oct 99 which resulted in angioplasty and two stents. I have another scheduled for next Wednesday. I think the pain medicationss helped some before but I still had problems. Do you know anything else that might help?
Pain medications (narcotics), if given in strong enough doses, should be able to take care of any RLS post operatively. This is why RLS patients do not complain until their post operative pain medication is reduced or eliminated at which time they are hopefully able to ambulate and move their legs.
Sent: Monday, September 24, 2001 10:48 PM
I am pretty sure that I suffer from RLS. I can be so tired that I have trouble staying awake at the computer but go to bed and that antsy feeling in my legs drives me to distraction. Sleep deprivation is my worse symptom but a debilitating one.
Have you ever heard of RLS being a symptom of Lupus? Also, I took Flexeril for something and it seemed to help me sleep through the night. I didn't see it listed. Is there any harm in taking that for the long term?
There is no known link between SLE (Lupus) and RLS, but there has been some indications of a possible relationship with Rheumatoid Arthritis ( a close connective tissue cousin of SLE).
Flexeril may help as this muscle relaxant's major action is to cause sedation which may help put you to sleep (in which case it may seem to help your RLS). There does not seem to be significant long term effects from Flexeril.
Sent: Tuesday, September 25, 2001 9:58 AM
Subject: Narcotic treatment for RLS
I would again really appreciate a bit of advice from you. I have tried all the recommended Parkinson's treatments (and some that weren't recommended) and have had no joy with them whatsoever.
Until last week I was very stable on 30mg of methadone and 20ml of Oramorph solution at night (this being the 10mg morphine per 5ml solution variety), and had reduced this from 65mg methadone and 30ml Oramorph in the space of 3 months without any loss of relief from the RLS.
However, I have now been changed over onto 70 mg per day of MS Contin tablets (kind of slow release I think) and have been experiencing bad withdrawal symptoms, including pain, as well as a resumption in the RLS at night. I haven't now slept for 3 days and nights.
Please could you advise if you think that this conversion is correct or not.
Thanks again for your help,
Methadone seems to be an excellent narcotic for RLS. In fact, it may be the best one available. Although morphine is certainly a potent narcotic, it may not work as well by the oral route (MS Contin) as it does by injection (for RLS). I would suggest staying on the Methadone and not using the morphine at all.
Most RLS patients need between 15-30 mg of methadone per day. As you have already noted, you were able to reduce your very high dose or methadone to a more reasonable range without much problem.
You can also consider adding Neurontin and seeing if that reduces your need for methadone/narcotics.
A Reply from Joe F.
Sent: Wednesday, September 26, 2001 1:35 AM
Subject: Re: Methadone and RLS
Thanks again for your prompt reply. Initially I was placed solely on methadone but found that the RLS was still breaking through at night so badly that I still couldn't get any more than 2 hours sleep per night ( normally none). This is why my doctor agreed to replace a portion of the methadone with Oramorph just for the nighttime dose, and this almost completely resolved the RLS and I slept better than I had done in many years.
The idea behind trying the MS Contin was that we thought it was the morphine working better than the methadone (also that my doctor was not happy about mixing opiates in the long term), however, I am now beginning to believe that it was just that a fast acting opiate was required to get control over things at night. I am seeing my doctor this morning and shall discuss this with him, hoping that I'll be placed back on the methadone/Oramorph treatment in light of what you have said.
Unfortunately I tried Neurontin well over a year ago now for about 3 months and had no success at all. Finally, there has been talk of me doing a full detox from the opiates and then trying Permax to see if this helps. I am very worried about this as I have tried every other Parkinson's drug recommended for RLS (often at high doses) and had no relief of symptoms at all, in fact it just made me feel dreadful. If things like Requip, Cabaser, and Levadopa did nothing for me do you think it is worth going through the trauma of a detox to be 95% sure of being back at square one at the end of it all?
For some reason my neurologist recommended that I should be on the equivalent of 10 mg per day of methadone before the Permax could be introduced, is there anything in this, or am I just being pushed into coming off opiates because certain doctors don't like to use them?
Thanks for your time.
The odds of Permax working when all the other Parkinson's disease medications have failed is very small. The only other Parkinson's disease medication that might have a chance (still quite small) would be Mirapex.
Even if Permax would be helpful, there is no need to decrease your methadone/Oramorph first. You can start the Permax and if tolerated, you can then slowly try to decrease your narcotics while possibly increasing the Permax. That is the way I generally do it with significant success (and lots of experience doing so).
Sent: Wednesday, September 26, 2001 6:39 AM
Subject: Hypnic Jerks
I have been diagnosed with hypnic jerks. At the onset of my sleep I get jerks in my body that repeatedly wake me up. My neurologist said that they are a benign condition, and other than the fact that they interfere with sleep, are harmless. He said that Klonopin was the best drug for this condition and I have been taking 1mg at night before bed which allows me to sleep.
Despite what I have read on this forum regarding Klonopin, the doctor said tolerance/addiction was not a problem for Klonopin being used for hypnic jerks. I am still a little concerned about this. Lastly, I wonder, do the Parkinson's drugs work for hypnic jerks to actually stop the twitches and jerks like they do for the movements in PLMD?
Tolerance and addiction are a problem with Klonopin when taken for almost any condition. A very significant percentage of patients will experience problems sooner or later. In addition, Klonopin is a very long acting medication and when taken daily will cause daytime sedation (often this will be difficult for the patient to notice as it occurs gradually).
Shorter acting sleeping pills such as Ambien are far preferred. Regular drug holidays may also assure that no tolerance/addiction occurs (at least a week long drug holiday is needed for a long acting drug such as Klonopin compared with 2 days for the shorter acting ones).
There is no known role for the Parkinson's disease drugs for hypnic jerks.
A Reply from Kevin O.
Sent: Wednesday, September 26, 2001 8:15 AM
Subject: Re: Hypnic Jerks
I am extremely concerned about my options with hypnic jerks. On the one hand it seems like it is a less serious condition than PLMD, yet on the other hand unless the sleeping pills work I really have no other options to treat it. I am only 32 and feel like I may have to deal with this for many years to come. It seems like there are a lot of people with RLS and PLMD who can relate to one another, however I don't ever hear of people with these severe hypnic jerks. Is this more rare? Have you had a lot of patients with it?
What has been your success in treating it with Ambien? Does it ever simply go away?
Hypnic jerks are almost always a normal thing that happens to most people but on a very minimal basis. Your case is distinctly unusual in that I have almost never heard of anyone having that much trouble from hypnic jerks. I have never seen a patient with hypnic jerks that needed treatment.
It may be of benefit to have a sleep study to prove that you do not have some other problem.
Sent: Wednesday, September 26, 2001 5:38 PM
Is your experience still that Ambien is not addictive? In the process of rotating off Mirapex to Requip I am having trouble getting a dosage sufficient to stop the jumping legs. My doctor has agreed to my taking 1/2 of a 5mg pill at bedtime, but only 3 times a week. I got this word indirectly (via his nurse in response to my inquiry). I am guessing that he fears addiction if I take even this much EVERY night (a least until the Requip starts working more effectively) and I am looking for your advice before arguing the point with him.
Newt in Oregon
There is no literature as of now that has indicated that Ambien is addictive. I have vast experience with the drug and have not yet seen a single case of tolerance/addiction which occurs readily with the benzodiazepines (Halcion, Valium, etc.).
The usual dose of Ambien is 5-10 mg with most RLS patients needing the higher dose of 10 mg. It is still always the best idea to take the lowest dose of a medication needed and if you can get by with intermittent use of a sleeping pill, it will always be safer. Ambien is one of the safest sleeping pills available, but caution is a good thing to use with any medication.
Sent: Thursday, September 27, 2001 2:39 PM
Subject: RLS & Pregnancy
I am 31 weeks pregnant and about 2 months ago I noticed that I was getting twitchy legs.The symptoms are reasonably mild, my legs get slightly twitchy in the evening, but it is something that I do not have any control over. Is it likely to get worse? Is this caused by being pregnant and will it go away when I have had my baby? I have never suffered from these symptoms before in any of my other pregnancies.
I would appreciate any information that you could tell me about this problem.
Generally, the RLS that occurs during the latter half of pregnancy will resolve shortly after delivery. It may or may not (but usually does) return with future pregnancies. A few RLS sufferers may have persistence of the RLS symptoms even after delivery.
Sent: Saturday, October 06, 2001 10:04 AM
Subject: Melatonin and RLS
I just found your web site after doing a search for "Restless Leg Syndrome." I wanted to share my situation, and was wondering if anyone else had heard of a similar experience.
I am 24 years old, and for as long as I can remember, two things have always been true
1) I have never had a regular sleep/wake pattern.
2) I have never been able to sit still. Years ago, an aunt had told me that she was diagnosed with RLS. She brought it up after watching me move my leg repeatedly while trying to sit still. I identified with some of the symptoms, but didn't think much of it at the time.
After years of trying to "fix" my sleep patterns on my own, I recently went to a doctor who specialized in sleep disorders. Having diagnosed me with Delayed Sleep Phase Syndrome, he suggested using a small dose of melatonin supplement in the evening to try to get my circadian rhythms back on track. I followed his instructions, but the same night that I tried the melatonin, I began to feel an ache in my knees, calves, and feet, along with a terrible urge to move my legs when trying to sleep. Only vigorous motion of my legs eased the ache.
Although I have always been a fidgety person, I can not remember having such strong RLS symptoms. I tried going off the melatonin, and the RLS symptoms almost vanished. I was still fidgety, sometimes more often at night, but did not have such strong achy feelings in my legs at night. As an experiment, I tried going back on the melatonin for one night, and sure enough, the RLS symptoms were back.
After doing some research on the internet, I saw that some researchers believe there to be a circadian link to RLS. I was wondering if anyone else had these symptoms triggered by a melatonin supplement like I did.
Thank you for a very informational and useful web site,
Eric J. S.
There is a definite circadian (24 hour) rhythm to RLS. We are not yet sure of which of the many hormones released on a circadian basis may affect RLS. Your report is the first that I have heard of Melatonin affecting RLS and we will see after posting this letter if others have noted this problem.
Sent: Monday, October 08, 2001 11:48 AM
Subject: Prilosec and RLS?
I am a 59 year old female and I began having symptoms about eight months ago. I was sitting and reading the newspaper and suddenly I felt the skin on my legs start to move and ripple. It freaked me out. This seems to have started about a month after I was prescribed Prilosec for acid reflux. Now that I have read the letters, I realize it started maybe a year ago when I would have the urge to stretch the calves of my legs after going to bed. As of three days ago, it has progressed to the point that I am having severe pain in my legs & thighs and I am taking six aspirin a day.
I decided I would look on the internet for restless leg syndrome, since I had heard of it and it seems to me it is the problem. I described my symptoms to my doctor and he said I was a strange case because he had never heard of anything like it before, and that was that. I asked him if the Prilosec could be causing my (strange case) and he got his book out and said "no, but people react differently." I can't imagine the pain I have been experiencing the last three days getting any worse.
Since I have been into exercising & a healthy lifestyle for the past 30 years, I am going to try the calcium remedy someone mentioned in one of the letters. Knowing about calcium and its role in a number of ailments, I believe it just might work for me. I also have the tingling and rippling feeling in my arms, torso, neck & face.
Prilosec has not been implicated for worsening RLS, but anything is possible. Consider having your doctor prescribe Mirapex or Requip for your RLS if you do not get better with your current treatment.
Sent: Monday, October 08, 2001 6:53 PM
Subject: RLS and Permax
I too have restless leg syndrome. Looking back, I believe I've had it ever since I was a kid. It seems to be getting progressively worse as I age (I am now 64). I have tried Klonopin (helped a little), Sinemet (seemed to make it worse), and now I am taking Permax. I take .05 mg around 7 PM and .05 mg around 11 PM, just before going to bed. So far it seems to be relieving the constant movement better than anything else I've tried. I only hope it keeps working for me. I've had nights where I only got an hour or two of sleep. Hope this helps someone out there.
Permax is a good medication for RLS but the newer medications Mirapex and Requip (all of which are dopamine agonists) work even better. With proper RLS medication, you should have almost no problems sleeping.
Sent: Wednesday, October 10, 2001 1:32 AM
Subject: RLS/PLMD - need HELP!
I developed RLS in 1986 at age 48, finally got a diagnosis in '89 from Scripps' Clinic/La Jolla which diagnosed RLS and apnea and treated Sinemet - a help but not a cure.
I then found an MD/PHD who, when I told her about having coffee at 2 a.m. as a sleep aid, hunched on ADD and did a full workup - confirming it. The first time I took Ritalin was a revelation: the world was organized, and I understood it and could even concentrate on it and on solving problems - while sitting still!
I understand each person's unique reaction to drugs - but commonly those with ADD calm down on stimulants. Unfortunately for some, the same stimulants worsen RLS. For me, they usually helped quiet RLS. As to pain meds: Percocet is like taking placebos, Aspirin and Advil work fairly normally if I take 3 or 4 aspirin or 2 Advil. Tylenol w/ or w/out codeine is useless. A pre-surgical infusion of Valium and Demerol is happy time with no RLS. Aleve gives me a slightly off-center feeling and gets rid of all small pain leaving me free to notice the big one I was trying to get rid of. Pain meds seem to not affect my sleep.
All of the anti-depressants I've tried had little to no effect. Some hypnogogic medications and tranquilizers worked great for one night, not so well the next night and were just munchies by night three. Some just made the RLS worse. For the ADD I took Ritalin and/or Dexedrine for office work (i.e. 2 or 3x /wk) for about 8 years until I developed tardive dyskinesia. Now I go with coffee and fake it. I understand some have had luck with Provigil during the day - but it causes me bruxism.
Having burned through Sinemet (6 years) Permax (5 years) and Mirapex (5 years to 1.5 mg currently), I'm now close to maxing out on Mirapex and am ready to try anything else for a drug holiday. If I hit rebound and/or augmentation with Mirapex, I'm out of luck. Clonazepam has never helped for sleep, nor did Selegiline which I tried using to improve my sleep architecture which is described as 'lousy'. Ultram didn't help the RLS, nor does Dilantin.
With the RLS, which no longer seems to be the major problem, I now have violent limb movements while trying to fall asleep. Mirapex seems to make these worse for an hour or so, then better. Once asleep, I'm up in an hour or two and then up and down till 4 or 5 a.m. when I'm through 'sleeping' for the night. Needless to say, I'm beat - exhausted. And at my wits end as to what to try. I did a Circadian reset which worked better as long as I stayed on 27-hour days, but did not work when I tried to revert to standard 24-hour days. Several sleep studies re-confirm RLS, apnea and the limb movements. I use CPAP but with little noticeable effect.
Lar by night
It is hard to make suggestions due to the complexity of your case. It might help to take the Mirapex earlier, so that the more positive effects "kick in" when you go to sleep. One medication that might be helpful (although with your strange reactions to medications, who can tell?) and worth trying is Neurontin.
When riding in a car for a short distance I could hardly sit still. I sat on the edge of the seat and prayed all the way home. I did not want to say anything to my family because I thought it was all in my head. I would pound on my legs. I begin to stay up all night crying and pounding, doing exercises, eating, putting my legs in hot and cold water, anything I could think of to try to get relief. I realized that if I got to bed before I got really tired that I would be okay. I stopped going out to eat, or accepting invitations.
When I finally told my doctor he gave me Prozac. He says that it is my nerves. Recently, out of frustration I told a friend. He said that it sounded like RLS. I cried when he described the same symptoms that I had. All this time I was convinced that I was crazy. I still do not sleep well. I am so tired I can hardly make it through the day.
take Vicodin for migraines and have realized that this has helped my legs. I am scared to take it often for fear of becoming addicted. I am also confused with this recent test of the ANA. My joints hurt and I am not sure that it may not be something totally different from the RLS. My husband says that I cry out during the night and say my legs are hurting.
Do you have any advice???
If your discomfort in your legs occurs at rest, is associated with an almost irresistible urge to move the affected limbs and movement helps relieve the symptoms, then you have RLS.
We have not heard of Vitamin C in small or large doses helping RLS, but anything is possible with RLS. Carbamazepine has been used with some success in RLS and if your symptoms worsen off of it, you can ask your doctor to restart it.
I did not want to say anything to my family because I thought it was all in my head. I would pound on my legs. I began to stay up all night crying and pounding, doing exercises, eating, putting my legs in hot and cold water, anything I could think of to try to get relief. I realized that if I got to bed before I got really tired that I would be okay. I stopped going out to eat, or accepting invitations.
When I finally told my doctor he gave me Prozac. He says that it is my nerves. Recently, out of frustration I told a friend. He said that it sounded like RLS. I cried when he described the same symptoms that I had. All this time I was convinced that I was crazy.
I still do not sleep well. I am so tired I can hardly make it through the day. I take Vicodin for migraines and have realized that this has helped my legs. I am scared to take it often for fear of becoming addicted. I am also confused with this recent test of the ANA. My joints hurt and I am not sure that it may not be something totally different from the RLS. My husband says that I cry out during the night and say my legs are hurting.
Do you have any advice???
Should I take both pills at the same time? If I take them early in the evening, I am awake at 3:00 or 4:00 AM with RLS!
Most RLS sufferers find that taking their dose of Requip about 30-120 minutes before symptoms occur (in your case at bedtime) works best. You have to see how fast the Requip onsets.
Are these common symptoms of Zopiclone use? Is it time for me to move on to a Parkinson relief medication? I value your web site and appreciate your reply.
Bill in Calgary
Reply from Barbara
In recent months, there seems to be a common perception that one can develop a tolerance with Mirapex (and perhaps Permax and Requip?), with the answer being to rotate between Mirapex and one of the others, etc. But, when I E-mailed you the question of your own experience in this matter, you came back with the fact that you do not believe that tolerance has (ever?) occurred with your many patients. In our support group we have a few members who say that they have had to increase the dosage of Mirapex after a period of time, with the assumption that this says "tolerance". Several of our speakers have also agreed with the tolerance and rotation principles.
The thought suddenly came to my mind last night that there may in fact not be a disagreement here -- perhaps just a misuse of terms. Starting from the beginning, is it not true that there is as yet no known cure for RLS/PLMD, and that one can expect it to become worse as time goes by? Is that not due to the fact that the body gradually produces less and less dopamine? If both are true then does it not follow that you need to increase the added dopamine or dopamine agonists to compensate for that natural reduction? That would say that what is happening is not a tolerance problem but merely a case of playing catch-up. True?
My personal experience has been that, finding that I was needing more of my already fairly heavy dose of Mirapex (1.0mg in total including 0.5 at night) I decided to rotate to Permax and, when that dosage turned out to be close to what you describe as an upper limit (rather than an "equivalent" quantity), I gave up and switched to Requip. When taking 8 per day of the 0.25mg and only getting 2-3 hours sleep at night, I again gave up and went back to the original dose of Mirapex -- taken a little later and adding a single bedtime dose of either Ambien or Sinemet to jump start my night until the Mirapex kicks in. This seems to have worked quite well, leaving me only with the future question of whether I dare increase the Mirapex (for fear of developing a tendency for sleep attacks).
In summary, and discounting my own high dosage, is it then true that one should accept the need for increasing Mirapex over the years, and just not call that a tolerance buildup? And, if that is true, do people really need to resort to rotating if their only problem is with the need to increase the Mirapex? If this is so, then we can avoid much of the chasing of the tail that we are now prone to do. What do you think?
Portland RLS Support Group
Tolerance definitely does occur with Mirapex. It is hard to estimate the percentage of patients that get this, but it is likely somewhere in the order of 15% or less. This tolerance is different than that seen with other medications, as it is often relieved by increasing the dose (which can be counter productive with other drugs, such as Sinemet).
I started two weeks ago with 1 mg 3 times a day. I have a very severe case of RLS. It is not enough BUT I really hesitate taking more. I am up already at 3:00 a.m. walking. I take my pills at noon, 5:00 and 10:00 p.m., 1 each time BUT I have had to add at least one of the .125 Mirapex to keep me sane.
Can you also get back to me about the side effects of Requip. AND should I go back to Mirapex. I was hoping that Requip would help my dryness but so far haven't noticed any changes. Should I continue longer to really give it a chance. There are lots of questions here BUT I really need help.
Thanks so much.
My mother who is 83 has been taking Mirapex for about a year now and it does seem to help with her RLS. But can you help me I am trying to find a sinus medication that does not say if you are taking a medication for Parkinson's disease that you should not take. She suffers from frequent headaches from sinus pressure.
Thanks so much,
Since I also have rheumatoid arthritis it is very difficult to walk to alleviate the symptoms of RLS which do not let up for a minute the entire night and nothing seems to help. Therefore I am trying to find known drugs that can cause it.
Thanks for your help,
I tried Mirapex and Ambien but both made me very nauseous, gave me insomnia and made me very jittery. I tried Sinemet which worked OK for a few days but then made my RLS worse. For the last year I have had great success with Permax and Requip which I rotate. I thought I had found the answer to my prayers!
Imagine my sorrow when I recently began getting bad side effects with Permax - extreme nausea. Requip still works, but I need more of it and would like to take a drug that I could rotate with it. Darvocet works somewhat, but too much of it or any other opioid make me sick and jittery.
What would you recommend I take when I go on drug holidays form Requip? I would really appreciate an answer. I cannot sleep at all without an effective medication for RLS.
You have helped me before, for which I thank you. I wish ask you another question. I am 82 years old and have RLS all of my life, and severely since I was about 70. I am taking two .125 Mirapex at 8 AM, and 2 at 8 PM, with moderate success. I have a terrible time sleeping, though I don't think it is necessarily the RLS that is causing it now, so I take Roxicet occasionally.
A dear young friend who is pregnant was suffering so badly with the RLS and could not take a lot of the medications like Mirapex until the pregnancy and nursing ends. A doctor told her that she should take Ferrous fumarate, and it was available behind the counter without a Rx. She says it has definitely eased her RLS symptoms, though not erasing them completely.
My question is, do you think it might help ease my RLS? I will give you my counts so you will see my condition. Ferritin was 90 in 1998, 219 in 2000, and 187 in July of 2001. My iron count shows: 103 in 1997, 83 in 1998, 108 in Dec 2000, and 94 in July 2001. My RBC was 4.75 in 2000, 4.55 in Jan 2001, and 4.82 in July 2001. These counts seem normal to me, but I am wondering if more iron would help. I hesitate to try it without some advice, because I hear of the dangers of iron poisoning.
Your advice will be appreciate.
Lynne G., Medical Reply
The Creepy Crawlies I'm a 41 year old female and, after reading some of the sad stories of suicidal tendencies and leg pounding, I guess I have what is a rather mild case of the "creepy crawlies" in my legs. I usually just rhythmically wiggle my feet and legs till I fall asleep. The worst part for me is frequent night time "Charlie horses" in my calves and arch of foot. At least three or four nights a week I'm pacing the floor trying to walk off the sudden onset of pain.
At this point, the RLS is manageable without narcotics since it is not waking me. Would it be possible that there is an over the counter vitamin or mineral regime that might possibly help? This all started for me while I losing 70 lbs on a strict low carbohydrate diet that I still loosely follow.
Thank you!!! Medical Reply
I will see my doctor in a week but RLS is kind of new to him but he is willing to work with me. Mine usually start late afternoon and am going to have to up the dose of Requip. I have been taking to 3 of the 0.5 mg and 1 of the 0.25 mg tablets late afternoon an at bed time and it is has started not stopping the RLS.
Thank you very much,
Thank you for listening. I guess it's something to look into.
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.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Click to go to the RLS Homepage, RLS Treatment Page