If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Saturday, August 05, 2000 7:41 PM
Subject: RLS, Sleep Disorders and Questions
I have been reading your web page and I have a few questions. Let me explain, I have a sleep disorder. I would get up and eat at night. I just finished a sleep study and the diagnosis was RLS and slight sleep apnea.
They said I had 25 RLS episodes and 15 sleep apnea episodes per hour. So I was waking up 40 times per hour. Needless to say I did not sleep well.
RLS symptoms have never consciously bothered me during the day. Therefore I was surprised when I was given the diagnosis. Do people have episodes where they are awake their limbs are uncontrollably during the day?
The prescription is Sinemet, Sinemet CR and Codeine/Tylenol No. 3. I am a little worried about taking these meds. Sinemet does not currently bother me. Yet I have read about some side effects that don't sound too good long term. And Codeine/Tylenol No. 3 is it addictive? I take one or two tables at bed time. Do I have anything to worry about?
Any answers would be greatly appreciated,
You do not have RLS, you have PLMD. RLS does not need a sleep study for diagnosis as it is diagnosed by the symptoms of extremely annoying discomfort in your legs which occur at rest (while awake, of course) and get better with exercise. You obviously would know if you had that problem.
PLMD (Periodic Limb Movement Disorder) consists of leg jerking movements mainly while asleep. That is what you probably have. The amount of PLM's is not really important, but rather the amount of PLM arousals. If you do have 25 PLM arousals per hour (rather than 25 PLM's without arousals), then treatment should be helpful.
Sinemet often helps this problem, but Mirapex or Requip probably work better. Sleeping pills such as Ambien or Restoril may decrease the PLM's and more importantly decrease the arousals from these leg movements. Sedatives such as Restoril do have the potential to worsen your mild sleep apnea problem, so that should be considered when using this class of medication.
Tylenol with codeine is quite addictive and is more helpful for RLS rather than for PLMD. It should not be used for PLMD as there are much better non-addicting drugs.
A Reply from Brad S.
Sent: Saturday, August 05, 2000 8:48 PM
Subject: RE: RLS, Sleep Disorders and Questions
Thank you for your quick and informative reply.
My Doc did not seem to think that the codeine in the amounts prescribed 30 mg to 60 mg was addictive however I am always skeptical of anything that is derived from opium. He reassured me that they have over 100 patients are using it without any problems. Myself I would rather take a sleep aid that offers NO CHANCE OF ABUSE. Does Ambien or Restoril have an addictive qualities? Is it as effective as codeine for a sleep aid? It is great to get a good night sleep but addiction's price tag is way to high for me.
I am very excited to get the diagnosis now I want to get the right prescriptions that will not ruin my life.
Thanks again and any response is greatly appreciated.
Codeine at 30-60 mg per day has a small but definite addiction potential. If one stays at that dose, the chances of addiction remain small, but as symptoms may worsen and thus necessitate an increase in the dosage, the addiction potential increases. Again, codeine is not the drug of choice (or recommended) for PLMD without accompanying RLS problems.
Restoril (and all benzodiazepines) have some addictive potential, but if used cautiously, can be very safe. I have my patients take regular drug holidays (at least 2 days off every 2 weeks) from these drugs and have found that to be a very effective means of protecting against tolerance/addiction to these drugs. Ambien is in a new class of sleeping pills that so far claims no addiction problems, but I am still careful in prescribing this drug.
Mirapex and Requip are probably the most effective drugs for PLMD and have no addictive potential. They are not sleeping aids, but simply reduce or abolish the leg jerks.
Sent: Monday, August 07, 2000 1:02 PM
Subject: RLS and Pregnancy
I just happened upon this condition and though never officially diagnosed, feel that I fit the descriptions perfectly. I first noticed RLS after the birth of my oldest son (now 4). Because of a high-risk pregnancy, I was confined to bed for the last three months of my pregnancy and given beclomethasone steroid shots (to speed up lung development in case of early birth), and Brethine (to inhibit contractions). After his birth I developed RLS and attributed it to lack of exercise, leg atrophy etc.
It did finally go away after I got back into my normal routine of exercise. It recurred again during the latter part of my second pregnancy and for several months after his birth. Again, it seemed to go away with the return to my regular exercise. I am currently in the first trimester of my third pregnancy and it has hit again-worse than ever.
I am only 28 and am concerned as I have heard that this get worse as you get older? Have you found any connection between RLS and pregnancy/childbirth?
Pregnancy and RLS are well correlated. It usually gets worse during the latter half of the pregnancy and remits soon after pregnancy (in most cases, but your case was clearly different). The reason for this link between pregnancy and RLS is not known, but is has been speculated that iron, B12, folate or other vitamin deficiencies might be the cause.
RLS generally does get worse with age, but it can have a waxing and waning course and can be quite variable.
Sent: Wednesday, August 09, 2000 10:22 AM
Subject: Twitching with RLS
When people complain of twitching, is this a feeling or can the see their legs and toes twitch. I can and I wonder if that is what they mean and if it is common.
Both. Some just feel the twitching, and others actually have large movements of their limbs. More RLS patients probably feel the twitches than actually see them moving.
Sent: Wednesday, August 09, 2000 1:00 PM
Both Permax and Mirapex are effective in reducing my RLS sensations but make me feel bad...not so much nausea but like I have a mild case of the flu. Starting at very low doses and working up doesn't help and even after taking Mirapex for 2 years (.5mg before bedtime) I still get this effect. So I finally just stopped taking it and substituted Sinemet 25/100 (1.5 tablets) plus Neurontin at 300 mg and get about the same control but without the lousy feelings.
I worry that over time this regimen will have to be increased (I'm not having any appreciative rebound now) and would like to have Mirapex to fall back on. What do you think about using domperidone with the Mirapex? I live in the US but I'm told that it is available through Canadian on line pharmacies.
Domperidone works for nausea, but will probably not rid of your flu-like feeling. You may want to try Requip. Although it is very similar to Mirapex, often small differences in medications may have marked differences in their side effects.
Make sure that you keep the Sinemet under 3 tablets per day.
Sent: Thursday, August 10, 2000 10:51 PM
Subject: Paxil and RLS.
Due to some weight gain, I have been trying to figure out if any of the medications I take could be causing it. My gynecologist switch me from prempro 0.625 mg/5 mg (conjugated estrogens/medroxyprogesteone acetate) to ortho-prefest (1mg estradiol and l mg.estradiol/0.09 mg norgestimate). There was no change in weight. I also take Vioxx 25mg for arthritis.I was on Mirapex 0.25mg and changed to permax0.25 due to sleep problems. There was no change in the sleep problems.
Lastly. I was taking Paxil 20 mg. At a conference, a doctor lecturing on pharmacology stated that Paxil can cause weight gain. Therefore, I discontinued the Paxil. Now the RLS seems to have increased. Whereas I use to only have to take one tablet and occasionally 2 (Permax or Mirapex), I seem to need more. Would the discontinuation of the Paxil increase the RLS and do you think Paxil causes weight gain or increased the RLS? I hope all this makes sense.
I also take chromagen 60 mg. which I started taking in June when I went to my gym and discovered my iron was low.
Many thanks for your help, again.
Paxil, like most SSRI type of antidepressants, often makes RLS worse, but a significant group of RLS sufferers may get better with this class of drugs. The only way to be sure is to do another trial on and off the drug and see if it correlates with changes in your RLS symptoms. Other SSRI type of antidepressants do not have the weight gain problem of Paxil (and even with this problem, it is still quite likely that the Paxil may have not been the cause as weight gain has many different causes).
Low iron levels may cause worsening RLS, and iron therapy may improve it. You should bring your ferritin level above 50.
Sent: Saturday, August 12, 2000 11:55 AM
Subject: Rotating medicines
I am presently taking .125 mg of Mirapex in the evening. At bed I take 20 mg of Oxycontin. I have tried most of the medicines available for RLS. My doctor wants me to rotate medicines once a week, but I cannot find anything else that works. Even the Oxycontin seems to work less well after five or six days.
Is it necessary to rotate or take a drug holiday for Mirapex and Oxycontin? Is the Oxycontin addicting at 20 mg? So far, I have had no problem going off of Oxycontin when I am trying to find some other medicine to use to rotate.
Barbara, age 61,
There should be no need to take drug holidays from Mirapex. There is much more concern about the OxyContin. Your 20 mg dose is already in the moderate (or possibly high) dose range for RLS with this potent narcotic and the fact that after five to six days you notice that it does not work as well, indicates that you may be getting tolerant to the drug. It might help if you could alternate this drug with Ultram (or some other drug that relieved your RLS complaints).
Your dose of Mirapex is very low. Perhaps increasing the Mirapex (slowly, by .125 mg every week) might decrease or eliminate the need for high doses of narcotics.
Sent: Saturday, August 12, 2000 12:30 PM
Subject: My remedy for RLS
I have suffered from RLS all my adult life, 40 years, and never even knew it had a name. Then I read about it somewhere and cried, it was real, and recognized. For the past three months this has been my solution and for me it works 99% of the time.
At about 3 p.m. I put 3 oz. of aloe Vera juice in an 8 oz glass, add 2 tbs. of grape juice concentrate and top it off with half tonic water, and half caffeine free ginger ale, not the diet kind. Then after dinner, I take my calcium and magnesium supplements. I do my walking in the morning, as late afternoons or evenings can bring it on. If it does start, I drink an extra few oz of tonic water. Hope this will help someone as much as it has helped me. I feel like a new person.
Sent: Monday, August 14, 2000 2:29 PM
Subject: Need information about akathisia.
My mother in law was diagnosed with akathisia, is this the same as RLS? if not, where can I find information on akathisia? how can we know if she really has akathisia instead RLS?
Thanks in advance,
León Guanajuato, México
It is very hard to get information about akathisia, even from most medical textbooks. One really has to search the neurology (and RLS) literature to find out much about this disorder. This disorder is totally separate from RLS, although it can easily be confused with RLS by non-experts.
Akathisia generally occurs as a side effect of neuroleptic (mainly the antipsychotic drugs such as Haldol) drugs. It is defined as "a subjective desire to be in constant motion" associated with "an inability to sit or stand still" and "a drive to pace up and down". It is different from RLS in that the restless movements are almost always associated with unpleasant sensations in the affected limb, and the movement is in part present to resolve this unpleasant sensation.
Akathisia is not limited to the limbs (it is a more general feeling of restlessness), is present at all times (compared to the evening/night worsening of RLS) and is most prominent when the patient is standing (as apposed to RLS, which is worse sitting and lying down).
Sent: Tuesday, August 15, 2000 12:11 AM
Subject: The Incredible Itch
I'm very impressed with this site; I just found it this evening. I really do feel bad for all of you in your suffering. Mine is an on again off again situation. I'm 51 now and have had this since I was 34; rather I became aware of it at that time and began to seek help.
I started with Triavil, added Pamelor. Graduated to Klonopin with the Triavil. Then "The Incredible Itch" appeared on the scene 6 years ago. It also comes and goes with out warning. So nowadays I'm on Neurontin 600mg, Doxepin 50mg, and (Clonidine for this itch)
It's past midnight and usually I'm sleeping, but guess The Good Lord has something else in mind for me at this time.
I'm Glad I found you all and sincerely wish you the best.
Thanks for your letter. Beware, that most anti-depressants (such as Triavil, Pamelor, and Doxepin) worsen RLS much more often than they help. These drugs could be part of your problem, rather than the solution to your RLS.
Sent: Tuesday, August 15, 2000 10:19 AM
Subject: RLS and glaucoma
I'm trying to determine if there is a link between individuals who have glaucoma and RLS? I'd like to know if you have any info. regarding this
I have never heard of any association between these two medical problems, but I will post it on our site to see if anyone else may have knowledge of this.
Sent: Tuesday, August 15, 2000 6:52 PM
Subject: New Meds Prescribed (see previous letters, top of this page, August 5, 2000)
My doctor prescribed Klonopin for sleep as I did not sleep through the night with Tylenol #3. I have only taken half of a pill of Klonopin and a Tylenol #3 and I don't sleep through the night. I wake up at about 3:00 am. From there I am in and out of sleep.
I am still sleeping better than I was before the medications. No nocturnal eating for the past 3 weeks. This is great! I plan on taking a full pill Klonopin tonight and not take the Tylenol 3. I am still taking the Sinemet but that only works until about three in the morning.
To tell you the truth I'd like to dump all of them and try Melatonin, could it hurt? I am worried about side effects and addiction. My doc is out of town until the 21st. when he gets back I am going to request Sonata (Zaleplon) for sleep. Does this have less side effects than Klonopin? From what I've read it is not addictive.
Does Sinemet have a rebound affect in some cases? I just asking. Thanks,
Klonopin is used a lot for PLMD, but it causes daytime sleepiness in a majority of patients who use it. It is also reasonably addicting. Sonata is likely non-addicting, but it has a half-life of only one hour, so that it will not keep you asleep and unaffected from your PLMD for long. Ambien has a short half of 3 hours, but it can last much longer throughout the night (compared to Sonata) which is why it is a better choice for you.
Melatonin may help some people fall asleep, but I do not think that it has much of a role in your case.
Sinemet does cause rebound, but that is more important for RLS (as far as we know).
A Reply from Brad S.
Sent: Thursday, August 17, 2000 5:52 AM
Subject: Taking the weekend off.
Is there usually any problem taking the weekend off from Klonopin and Tylenol #3. I've read you can have some problems from stopping Klonopin. I have only taken it three times this week. My plan would be to not take them Friday and Saturday and only take them when I have to work the next day. Does this sound prudent?
After thirty years of this problem not sleeping properly for two nights is nothing compared to of so many years with no sleep.
Thanks for your help,
Klonopin has a very long half-life with lots of active metabolites. Even when you stop it for 2 days, it is still in your system. It would take a week or so to get it out of your body. Therefore, stopping it for 2 days does not really help your situation. This does work much better with the shorter acting benzodiazepines.
For some addicted benzodiazepine users, significant withdrawal problems (including seizures) can occur when this class of drug is discontinued suddenly..
The drug holidays from codeine, however, may be quite helpful.
Sent: Tuesday, August 15, 2000 8:23 PM
Subject: Restless Leg Symptoms
I have not been officially diagnosed with RLS, but I believe I do suffer from this malady. My legs feel like they are vibrating or buzzing on the inside. I suffer with this every night and I have not slept well in about 2 years. I take calcium, magnesium, potassium, and Vitamin C each night before going to bed.. I usually shake my legs constantly until I finally fall asleep.
When I wake in the morning and I start to stretch while I'm still lying in bed , both my arms and legs seem to start with these strange feelings all over again. It seems that when I'm sleeping this vibrating energy is stored in my body and I have to start moving to alleviate these sensations. I was just wondering if anyone else suffers from this weird feeling when they first wake up.
I also suffer with muscle twitches and some pain associated with this syndrome. I have not seem a doctor as of yet because I feel that they would not understand what I am suffering from. I can't even get my family to understand or support me as I continue to suffer night after night and day after day. I am just so very tired everyday and can't get anyone to understand why I feel this way.
I hope I can get up the courage to find a doctor to help me. It sounds promising that I can at least get enough relief to get a good nights sleep. Sleep, doesn't that sound wonderful!!! Thank you for this wonderful site. I feel much better knowing that I'm not the only one suffering. Now, I know that I'm not crazy.
It does sound as if you have RLS. The RLS symptoms are most often worse at night, but as the RLS gets worse, many have the problems starting when they wake up.
Do see a doctor as there are now lots of good treatments for this condition.
Sent: Friday, August 18, 2000 4:46 AM
Subject: RLS and orgasm.
I am a 76 yr. old female and have suffered from RLS as long as I could remember.This is embarrassing but I have found that achieving an orgasm will usually be of some value in a really bad attack.
If you look through our letters, you will see several who have reported similar improvement in their RLS with orgasm. You are certainly not alone with your disease or your novel treatment of it.
Sent: Saturday, August 19, 2000 2:11 PM
Subject: RLS remedy
My doctor recommended I try Calcium, Magnesium & Zinc capsules & it works great! When legs start "drawing up" or at bedtime I take 2 capsules &within 15 minutes they are relaxed. Occasionally I have to take another one around 4 a.m. but not often. Of course there are no side effects. I purchase them at a Natural Food Grocery store & they are a bit more expensive than buying them at Wal-Mart but I feel the quality is superior &less pills to swallow.
Sent: Sunday, August 20, 2000 11:34 AM
Subject: Hypnogogic jerks
I have a tendency to jerk just before I go to sleep or twitch when I sleep. It drives my wife crazy. I seem to have done this all my life (I am 47). Is there anything I can do?
The correct term for your twitches is hypnic jerks and they are more of a curiosity than of any medical concern. As this is a normal and common occurrence, no treatment is available or necessary.
Sent: Monday, August 21, 2000 9:38 AM
Subject: Cabergoline (see letter July 10. 2000)
Just thought I would let you know how the treatment with Cabergoline ( Cabaser ) is going. I decided to start taking half a tablet (0.5 mg) each evening at about 6pm after my main meal. After the first two nights, when I just felt the beginnings of the RLS but it didn't develop any further, I have had no problem at all! It is really amazing, the first time for years that I have been able to sit to read in the day or watch television in the evening without having to walk about. It is even more amazing that I have been able to sleep. My blood pressure has also reduced which is no bad thing as I was borderline hypertensive.
The downside is that I felt quite nauseous for the first two weeks particularly in the morning but this has largely worn off now. I am also feeling more tired especially after exercise which I am not happy about. I returned to my GP last week and have now reduced to 0.25 mg each evening. So far (after a week) this is still working and I am feeling less tired. I just hope it lasts.
Thanks for the update. Let us know how you do over the next few months.
Sent: Monday, August 21, 2000 10:16 PM
Subject: Herbs for RLS?
I am 36 years of age and for as long as I can remember I have troubles sleeping due to this "dead, heavy feeling in my legs" I don't really get the tingles, but I am compelled to "peddle the bike in the air " as fast as I can. It is the only way I can sleep. My legs have kept me awake and restless for hours at a time. Sometimes the vigorous exercise helps.
I have noticed lately that I cant sit for long periods of time without this aggressive thought that I have to move. Does anyone know if this is progressive. What can I do to treat this with herbs?
Cris A., Los Angeles
It does sound as if you have RLS. This disease does tend to get worse as you get older. The natural, herbal remedies help a very small minority of patients (see our web site for more details), so we recommend prescription medication if the problem get bad enough to warrant better therapy.
Sent: Wednesday, August 23, 2000 3:05 AM
Subject: Are hot legs/feet RLS?
I have a problem that is quite similar to restless leg syndrome. At some point in time I thought that I had read that my symptoms were also related to RLS but saw no evidence of it from this website. If anyone has any information, I would appreciate hearing from you.
When I go to lay down at night, my feet and legs get very, very hot. I am constantly moving them around to try to cool them but within seconds, they are hot again. I sleep with a fan blowing on them but it doesn't seem to help. I've gone to such extremes as to put cold cloths on my legs and running out into the snow bare foot in the middle of the night. Crazy, huh? This has been going on for years and started in my late twenties.
I did get a huge relief at one point in my life when I was taking Prozac. It completely took care of my problems.
Anyway, anyone else out there?? Please email me with any comments.
As the discomfort of RLS is very difficult to describe, you may in fact, be experiencing RLS. If moving your legs gives you relief (even very temporary relief), then RLS is a good possibility. If you get a similar burning when you sit in the evening, then it is even more likely that you have RLS.
Sent: Wednesday, August 23, 2000 9:32 AM
Subject:Physical therapy or muscle stimulation for RLS?
My doctor is checking on the Mirapex but wants to try a muscle stimulator or physical therapy in the interim. I don't feel that physical therapy will do any good but I was wondering about the muscle stimulator. Do you know of anyone this has helped?
My pain is mostly in my ankles but in the worst episodes when I have no medication I also have the same pain in my wrists.
Thanks again for taking the time to listen,
Physical therapy and muscle stimulation have no role in treating RLS. These suggestions usually come from doctors who know very little about RLS.
Sent: Wednesday, August 23, 2000 3:37 PM
Subject: PLMD in children?
I am just suspecting that my 11 year old daughter has Periodic Limb Movement Disorder. While falling asleep, and once asleep, she twitches and jerks, at least for 1-2 hours. This is a problem for her falling asleep...it wakes her up and has caused much anxiety for her. This is definitely disrupting her sleep (and mine). I have found lots on the web about PLMD, but not much about treatment for this age child.
We have an appointment with her doctor, but am not optimistic she'll know much.
It is quite possible that your daughter may have PLMD. The only way to prove this and to see if the PLM's cause significant arousals (changes of stage from deep sleep to light sleep, or awake) is to have her undergo an overnight sleep study.
Treatment is available for children after conservative therapy has failed. Drugs such as Sinemet, benzodiazepines, pergolide and clonidine have been studied in children with some success and a low incidence of side effects.
Sent: Wednesday, August 23, 2000 12:16 PM
Subject: RLS Victim
I am a 44 year old female that has had RLS since I was 28. I have tried a variety of medicine. In the beginning, my neurologist put me on Elavil. This worked for 10 years. I have been me on Sinemet, clonzapam, Paxil, Neurontin, Mirapex, Permax and Ambien. Every time I have to go back to Elavil which I am currently taking 50 mg a night along with .125 Mirapex and quite often Ambien. I know that the Elavil is not the normal medication for RLS. My legs just don't jerk they hurt which is why I have to include the Ambien sometimes. Consider how I was years ago, my RLS is much worse. I have no one to talk to to compare my symptoms.
I need a suggestion on any new medications out there that would also help with the hurting. One of my problems is that a lot of the medicine hypes me up instead of calming me. I even cannot take things like Nyquil...up all night. ANY HELP WOULD BE APPRECIATED...
Debbie in Virginia
Although Elavil generally causes very significant worsening of RLS, in some patients this drug seems to help. Since it helps you, there is no reason to stop taking it. Nyquil contains an antihistamine which is the class of drugs which virtually always cause marked worsening of RLS symptoms, so stay away from these drugs.
My first suggestion would be to consider increasing the Mirapex slowly (on a weekly basis, but with your doctor's permission and supervision) by 1/2 or 1 tablet until your RLS complaints are improved (usually to a maximum of about 3-4 tablets). A higher dose of Mirapex may take care of your problem.
If the Mirapex at higher doses does not help, then Ultram or a narcotic (one can even alternate these medications) may give you considerable relief.
Sent: Thursday, August 24, 2000 12:29 PM
Subject: Zanaflex for RLS
I was wondering if you have ever prescribed Zanaflex for either RLS or PLMD. I went to my physician today and talked with him about different medicines and this was the medicine that he wanted me to try. I understand that it is used primarily to arrest involuntary muscle movement. My physician told me that he had prescribed this for 4 of his patients that were quadriplegic.
By the way, my doctor was hesitant about prescribing Mirapex as he apparently was unfamiliar with this medicine. He did give me some Ultram which does help my RLS
I would appreciate some feedback.
Thanks for all that you guys do,
Zanaflex is a muscle relaxant which can reduce increased muscle tone associated with spasticity in conditions such as MS or spinal cord injury. It has not been studied for RLS, but it is unlikely to have any significant benefit for the vast majority of RLS sufferers. Baclofen, a similar muscle relaxant, was initially thought to have some benefit for RLS/PLMD, but in a very recent study in the journal SLEEP, was found to actually worsen RLS/PLMD.
Mirapex and Requip are still the best medications for RLS, and if you current doctor is not comfortable prescribing it for you, then consider finding one who will.
Sent: Thursday, August 24, 2000 8:13 PM
I am a 53 year old woman with a history of sleepless nights. Ranging from trouble falling asleep to trouble staying asleep. I am fairly certain that I have PLMD. While I am not aware of it, my partner describes classic symptoms, rhythmic kicking. It wakes her and keeps her awake but I am not aware of it.
I also have what I have always called "the jimmies." In the evening I often can not sit still, I "need" to put my legs up or I "need" to go to sleep. I don't have any of the other symptoms associated with RLS. My father, 88 is suffering badly with RLS symptoms... He wants to call it neuropathy and can't get a good diagnosis or treatment in his part of the world...
I am sending him material I downloaded off this site. I am taking Elavil. I have been on it for 4 years. During that time my sleep problems disappeared. It was prescribed by a gynecologist to whom I presented peri-menopausal symptoms. I got off it in June of this year, wanting to try hormonal therapy and lose the sweets craving and weight gain and my PLMD seemed to improve somewhat. All of my sleep problems resurfaced, I lost 10 pounds and couldn't hold out until my gynecologiist appointment. in September. I've started back on the Elavil 50mg at night.
So that's my story... I really wish I could help my Dad.
Get your father's doctor to put him on Mirapex and his "neuropathy" may disappear. Even in areas where there is not a lot of specialty expertise, if you can find a family doctor who is willing to read up on RLS (the literature from our web site and the RLS Foundation, not text books which have outdated treatments like Sinemet), then it should be easy for him to get proper treatment.
Sent: Thursday, August 24, 2000 10:43 PM Subject: restless legs syndrome
I just recently had a complete vaginal hysterectomy and the doctor put me on Estratest. since then I have had the restless leg syndrome at night. It drives me crazy! I want to stretch my legs and can't sleep. I am wondering if this is a side effect of the hormone or possibly the medication I took Vicodin plus I had a saddle block with DuraMorph ( a derivative of morphine)
It is possible that the estrogen hormone replacement therapy is causing your RLS to activate. The only way to prove this would be to go off the medication (with your doctor's permission) and see if the RLS goes away.
The medication that you were given for your surgery is the type of medication that we use to treat RLS, so it is unlikely that they would be responsible for worsening it.
Sent: Monday, August 28, 2000 8:12 PM
Subject: mixed diagnoses
I was diagnosed with RLS about four years ago. I have daytime symptoms, the usual legs, and some arm stuff. Thanks to this site and the list group, after some starts and stops with other meds (primarily Klonopin) I have been able to get along with Xanax .5 at bedtime (with lifestyle changes) relatively well.
In the past I have had an MRI (mild radiculopathy C5-6, C6-7). Sleep study, mild apnea/hypopneas, no PLMD. (??) I have mild arthritis. I had a GI bleed when I took Relafen for neck and should pain.
I've really done very well until this spring when I stopped taking PremPro and started having night sweats again. It sounds crazy but once I started waking up from having hot flashes again, then everything seemed to get worse, including the arthritis and RLS. My doctor is nice but not very knowledge, he didn't even know what Miriprex was. He does agree that we have to be careful of the snoring apnea problem, which got worse with many of the meds we tried early on.
Because of what I have read and the fact I already have daytime symptoms (which I am able to ignore) I have no desire to try Sinemet. It is my feeling that many of the non-Parkinson's drug options (sleepers, pain pills, Neurontin) could aggravate the apnea. Are there any options other than moving to something like Mirapex? I've been afraid to increase the Xanax, could that be an interim step?
I'm chugging along, taking my drug holiday with Xanax, and hoping that when the hot flashes ease I can get back to the stable state I was in before.
Ultram and Neurontin do not affect sleep apnea, but the narcotic pain killers and sedatives may worsen sleep apnea. Increasing Xanax does run a definite risk of exacerbating your sleep apnea. Ambien seems to have less respiratory side effects than the benzodiazepines (Xanax). Mirapex or Requip at your stage of RLS sounds like a better idea. Neurontin would also be a good alternative.
Sent: Tuesday, August 29, 2000 1:40 PM
Subject: Personal symptoms and remedies
I am grateful to find this website and read everyone's symptoms and experiences. I am eager to try new remedies, especially if they are simple and natural. I have suffered for many years and am especially aware of restless legs at night this past year.
I have regularly exercised for the past 30 years each morning and recently added an evening short walk. I have not noticed a correlation to exercise. I have followed a Vegan diet for the past 14 months and am now wondering about the low iron connection I read about on the RLS.org website. I plan to have the ferritin level done. I do take a B-12 sublingual daily but did not notice any effect from that. I have read about the connection of RLS with low magnesium and found that when I do not supplement with a Cal-mag-zinc tablet 3x a day, the sensations worsen. Other things that make it worse for me: sugar, coffee.
Other things that have helped on bad nights besides moving my legs: aspirin, Advil, warm milk (do not do this now due to being a Vegan,) Benadryl, chamomile tea before bedtime and praying.
MA, Southern California
Sent: Tuesday, August 29, 2000 7:54 PM
Subject: Environmental changes
Haven't been here for a while because my treatment was going so well. Mirapex is wonderful ! No more Sinemet or Neurontin, and I'm on the lowest dosage of Mirapex (.125 at 6:00 p.m. and 11:00pm). Now for the bad news and question. Something has changed in the last couple of weeks. Some of the nights have been as if I've taken no medication at all. Even my wife noticed it from across the room last night as I "flopped around" on the course.
Something has changed in my environment, and I'm stumped. I'm religious about "no caffeine", I've never smoked, my intake of alcohol hasn't changed, nor has my exercise level or diet. I've eliminated all the obvious things, and am very concerned that I can't identify the variable here. The only thing "new" to my system is that two weeks ago I received a "long lasting" steroid injection to treat some world-class poison ivy I encountered while backpacking. Other than that, I honestly don't know of anything even remotely new or different.
I'd appreciate any thoughts or ideas on where to look, possible things to try, things to eliminate from my life, etc. Thanks!
Steroid (cortisone like) injections may have effects on the body as a whole, not just your poison ivy rash. Corticosteroids (cortisone class of drugs) affect many of the organ and hormonal systems in your body. It is very likely that this injection is the cause of your new RLS problems.
Increasing your Mirapex to 2 tablets per dose (with your doctor's permission) may improve your RLS symptoms for now. Hopefully, the effects of your steroid injection may wear off soon, and you may be able to go back to your lower dose.
RLS sometimes gets worse for no apparent reason, so it is possible (but less likely) that your worsening RLS may have nothing to do with the injection.
Sent: Wednesday, August 30, 2000 11:38 AM
Subject: "Holiday Schedule" for meds
I will try to make this as short as possible. The RLS medicines I use on "Holidays" will be in parenthesis.
Ultram 50. mg (Roxicet 5mg/325 mg) While on Roxicet for 2 days I get leg cramps.
Ambien 5 mg. (Sonata 5 mg) Must take 2 Sonata for it to work.
Mirapex .125 mg (Bromocriptine mesylate 2.5 mg)
Take one Ambien at breakfast,one at lunch, one at bedtime. Take the 'holiday' bromocriptine only at bedtime.
I decided to use Week 1 (Sun and Monday eve for each holiday) as a holiday for Ultram then Week 2 for Ambien, and week 3 for Mirapex
I finally convinced my doctor to give me the Roxicet, bromocriptine mesylate, and Sonata as "holiday" meds, but he is concerned that this constant change of medicines, for 2 days of every week, will be hard on me. (I am 81) He suggested that maybe the 4th week should be with the regular medicines without any "holiday."
My question is: With the 4th week without change it means that each holiday will be for 2 days out of each month. Will this be enough to keep me from building up a tolerance for the meds? Or do I have to make the 'holiday' longer?
I'm finding since being on Mirapex that I do not sleep well, despite taking sleep medication. Would it help if I took the 3rd Mirapex at dinner time rather than at bedtime? Would it hold for the entire night until 8 AM the next day?
Thank you so much for all the help you've given me. I do appreciate it,
There is no right way to take the drug holidays. It is likely quite different for everyone. You probably can be quite a bit more lax on your rotations, and not have any real worries. Generally, one does not need drug holidays for Mirapex, unless you had developed tolerance to this medication.
I am not sure that using Sonata instead of Ambien is a real drug holiday, but that change cannot hurt you. Changing medication a lot is no big deal as long as they work and you do not get side effects.
The only way to tell if taking the Mirapex earlier is a good idea (and will last through the night) is to try it that way. There is no way to predict success or failure until you do it.
Sent: Thursday, August 31, 2000 8:21 PM
Subject: Problems with Neurontin for RLS
Every letter I have read describes the Heebie jeebies that I have experienced on and off since childhood. I use to sneak my husband's valium in order to get to sleep at night. Warm baths help sometimes and sometimes not. I finally was convinced that I had found the miracle drug, Neurontin 600 mg. one hour before bedtime. For several months I discovered a life that I had never known. To be able to sleep the night and wake up rested was something that I had never experienced in my entire life.
Then the hip pain started. I found that it became painful to get out of bed in the morning and move around and go up and down stairs. The pain got so it would not 'burn off' in the morning and would stay with me longer and longer every day. It took a bad case of food poisoning and going without medication for three days to discover that the Neurontin was causing the pain. Now four days after discontinuing the medication I am now having the heebie jeebies.
Tomorrow I go back to my doctor with a list of medications and hope that we can find the right combination.
Discuss using Mirapex or Requip with your doctor. They work very well for most RLS patients.
Sent: Thursday, August 31, 2000 8:08 PM
Subject: Ambien long term for RLS?
As you indicated might be the case, sclerotherapy did not relieve my RLS significantly, so I made an appointment with a neurologist.
I was disappointed that he first suggested Darvon, then Sinemet, then finally offered Mirapex (my desire after reading your web site information). The Mirapex seems to pretty consistently upset my stomach, and does not promote the sleep I need (although it was effective for RLS movements).
Fortunately, with the additional information I have gleaned, I have found less RLS difficulty since I avoid Nutrasweet altogether (just one glass of pop will give me a bad night), and also I have weaned off the very low dose (5 mg) of Doxepin I was taking for FMS. (I am practically asymptomatic for FMS except for sleep difficulty and some irritable bowel, for which it was originally prescribed.)
My only persisting problem is waking after about 4 hours sleep with difficulty getting back to sleep. While leg movements and discomforts were my cause for awakening just a month or so ago, now I don't notice that. Five mg. of Ambien provides rapid relief, but both my GP and gynecologist recommend not using Ambien for more than 2 weeks at a time. I can't seem to get a good answer as to why. Is it too new, or what is their fear? I will only take it if I need it, but have found such relief to awaken more rested that I don't want to give it up.
Thank you so much for reading, answering and printing all these (what must seem at times repetitive- letters). I just passed this web address on to a fellow-sufferer and felt so good knowing what this web site will do for her. I am not your typical web surfer, but found this site on my own, and feel God led me to it.
Most non-sleep specialist doctors will prescribe any sleeping for only 2-3 weeks as that is the FDA approved indication for this class of pills. Problems with addiction/tolerance/withdrawal have occurred with the benzodiazepines which is the major type of sleeping medication. Short term use avoids these risks. Despite these warnings, most patients can use these benzodiazepines for long times (many years) if they are careful not to increase the dose, use it intermittently, or (my frequent advice) to take regular drug holidays.
Ambien is the first of the non-benzodiazepine sleeping pills (Sonata is the second). This drug seems to have even less of and addiction/tolerance/withdrawal potential than the benzodiazepines. There may be some psychological dependence on the medication if used daily, but little documentation so far in the medical literature of real addiction. If taken intermittently or with regular drug holidays, I have yet to see addiction or tolerance to this medication.
Sent: Friday, September 01, 2000 2:05 PM
Subject: Restless Legs Syndrome in the young
My name is Caroline and I am a 39 year old mother of 2 boys. I suffer every night from RLS, it is the bane of my life. What is worse, is that my 4 year old son also seems to suffer, waking regularly and screaming complaining of pain in his legs. My husband and I are at our wits end trying to find a way through this and are worried that this will get worse as he gets older.
Doctors in the UK haven't got a clue and consider it an old person's disease. They say he will grow out of it. Please, can anyone help? Does anyone have any advice? Not for me, for my son.
Many RLS sufferers can trace their RLS back to childhood. In one study done in the UK, 20% of RLS sufferers had onset of their disease by age 10, and 36% between ages 11-20. If you have RLS, then you know that this is a disease that most do not "grow out of" and if fact, it generally gets worse with age.
Diagnosing children with RLS has always been very hard, and many end up with a diagnosis of ADD. This usually results in stimulant medication which may make the RLS worse. There are treatments that have been studied in children, but there is still a paucity of clinical data and guideline on how to treat this disease in the very young. Medications such as Sinemet, Permax and clonidine have had some success in case reports.
Sent: Saturday, September 02, 2000 7:15 AM
Subject: Restless leg syndrome and side effects from Mirapex.
I am suffering from RLS for the past six years. From the past two weeks the condition has become intolerable. I get rapid jerks in my knees, like knee-knocking, and jerks in my shoulder like shrugging.. This goes on CONTINUOUSLY FOR ALL NIGHT AND CONTINUING INTO THE MORNING. Nothing stops it except walking or keeping mind engaged. This has completely robbed me of any sleep for last couple of weeks.
I have renal insufficiency and diabetes. A few years ago, my doctor at Yale hospital prescribed Klonopin. Although it worked, the dose had to be continuously increased and I was groggy in the morning. I discontinued the drug. Since the condition has deteriorated substantially recently, I started looking for some solution in the internet. I am very glad I found the present one. After reading many letters, I think Mirapex may be a solution for me. However, when looked up the physicians reference book, it pointed out that a significant side effect is the occurrence of hallucinations. What I want to find out if any one have experienced hallucinations while taking Mirapex. I would be happy to hear your advice.
Just to-day, there is news report which says that a side effect of Parkinson,s disease drugs which contain anti-cholinegics is dementia. My question is does Mirapex contain anti-cholinergics. Sorry for this long letter. I appreciate your advice.
Mirapex is not an anti-cholinergic type of drug. Hallucinations are a very uncommon side effect of Mirapex mostly occurring at the much higher doses used by Parkinson's disease patients (generally ten time higher than RLS patients). With the usual doses used by RLS sufferers, there are usually not many problems with Mirapex.
Sent: Tuesday, September 05, 2000 11:01 PM
Subject: RLS and antihistamines
I cant really remember how long this has been going on but I am only 25 and I suffer from insomnia. I also have this weird pain in my legs and arms if I keep it still then it hurts and starts to jolt. I found out about RLS by looking up insomnia and couldn't believe that I found this, but I find that if I take Gravol, or Benadryl to sleep it worsens the pain mainly in my arm, it hurts so bad I can't keep it still. Is this a normal reaction from this type of medication?
I also noticed that as I fall asleep my body starts to jerk and it wakes me up, I'm kind of confused because I have symptoms of RLS but my sleep patterns change sometimes I can fall asleep really fast but this usually results in waking up a few minutes to a few hours. Or I can't fall asleep when I do same thing happens I wake up several times. I am always tired and I have no energy, I was diagnosed earlier this year with a B12 disorder. I was wondering if this could be the cause of the RLS and insomnia or contribute to it at all.
Gravol (the name used in Canada and the UK, available in the USA as Dramamine) and Benadryl are antihistamines which almost universally worsen RLS. You should stay away from this class of medication as they will worsen most RLS patient's symptoms.
Speak to your doctor about starting Mirapex or Requip. B12 deficiency has been associated with RLS, but not all (or even most) patients with RLS and B12 deficiency will get better with B12 shots.
Sent: Wednesday, September 06, 2000 9:00 AM
Subject: Dystonia due to RLS or Permax
My name is: Nancy Spalding I live in Siskiyou county in California ,the real northern California. I am a sufferer of RLS. and have been for years. About 1 year ago ,after 2 years of practically no sleep at all, my Dr. and I through inter-net found info on a drug that calmed my horrible sessions of walking the house at night because Nothing worked for me .No drug, exercise or anything that I tried, like sleeping standing up ,propped on the table, to positioning my legs against the bedroom wall etc. helped. I know we have all tried it all.
I started on Permax, a Parkinson's disease drug. I take .05 mg 5 times a day and those doses have to be taken right on time 3 hours apart or the legs take off and won't calm down for an hour or more. I am a forgetful person.
Is anyone else on the same treatment, how long, what dose, and have you found the treatment to lose its effectiveness after a time? Mine seems to be not as effective as it was a year ago. I am experiencing more daytime episodes in the last 3 months and I am terrified that its going to get out of control again. Any response, encouragement, or ideas would be so very appreciated.
Many RLS sufferers have used Permax successfully for their RLS symptoms for very long periods of time. Only about 15% will get tolerant to this drug then need higher amounts. If this happens, then the newer (and somewhat better) Mirapex or Requip will usually work as there does not appear to be cross tolerance between Permax and either Mirapex or Requip. Your dose is on the high end of normal, but many patients need more medication than you are currently taking.
Sent: Wednesday, September 06, 2000 11:42 AM
Subject: RLS & dystonia
I was recently diagnosed with RLS and the neurologist has me on Permax. The middle, ring and small finger of my left hand have cramped at night for the past 6 months. Now these fingers won't curl or uncurl independently. The doctor says this dystonia is related to RLS, but in all my reading on RLS I've not seen any reference to dystonic disorder. Are you familiar with a relationship between dystonia and RLS?
Mark A. San Jose, CA
There is no dystonia with or related to RLS. What you have is a separate problem, or possibly related to Permax (although I have never seen this problem with Permax). It might be helpful to change to Mirapex or Requip for a while and see if your problem gets better.
Sent: Thursday, September 07, 2000 8:51 AM
Subject: Mirapex side effects
I have been on Mirapex for about 2 years (0.25 mg). I take 2 1/2 pills at bedtime. I also take Klonopin approx. 2 times per week. I am experiencing some numbness and tingling in my lips, right forearm and right calf and foot. Could this be caused by the Mirapex?
I have tried other drugs for RLS which have not been very good for me. Neurontin caused the most grief and Requip didn't seem to keep the RLS under control. Do you have any suggestions for me?
Thanks in advance,
I have not seen this problem with Mirapex, but any side effect is possible with any medication. The best way to figure this out is to stop the Mirapex for about 2 weeks and see if the symptoms go away.
Sent: Thursday, September 07, 2000 2:46 PM
Subject: Flu-Like Symptoms with Mirapex
Mirapex is quite effective for my RLS but taking it makes me feel lousy, sort of like I have a mild case of the flu. This persists for months so I don't develop a tolerance to the adverse effect, and even if I reduce the dose to less than what is required to control the RLS I still "get the flu". So I am using a combo of 1.5 Sinemet tablets and 300 mg Neurontin which sort of gets me through the night, albeit marginally. I am reluctant to increase the dosage and would really love to return to Mirapex since it works so well. I asked you earlier about domperidone and you said it would help nausea but probably not the flu like symptoms.
Can you suggest anything else that I could try and that is available in the USA?
Thanks a million,
Requip is very similar to Mirapex and generally works as well but may have a different side effect profile. If that does not work, then Permax (or possibly even Parlodel) is a reasonable alternative.
Sent: Thursday, September 07, 2000 7:42 PM
I'm a 41 y/o male who has suffered from this frustrating problem for many years. My physician has prescribed two Darvocet 100 and Ambien 5 mg for me to take a short time before I go to bed. On most nights, after laying on my back with my legs elevated, it seems to help. I've noticed lately, however, that as I drive during my job (200-300) miles a day, the RLS has started to bother me again. What meds would be helpful during these times?
Mirapex or Requip would work well during the daytime, and likely even better than Darvocet at bedtime. Most general doctors do not know these drugs and may thus be quite hesitant to prescribe them.
A Reply from MJ
Sent: Friday, September 08, 2000 6:48 PM
Thanks for the response. Let me tell you the complete history. I have taken Mirapex, as well as Xanax, Klonopin, Elavil, sonata & Ultram. (This has been over several months.) None of them helped very much at all. I also take 60 mg of Paxil daily for OCD. As I stated, the Darvocet and Ambien does help some, but 2-3 nights a week I still don't get to sleep until 3-4 am.
You still may want to try Requip or Permax, which are similar to Mirapex, but may still work when Mirapex does not work. The only other drug to try is Neurontin. Some patients who take this drug get a little sleepy, but many do not. The Paxil 60 mg may be worsening your RLS. You can only decide this by going off it for a few days and seeing if it makes a difference. If another non-SSRI drug (Remeron, for instance) cannot be substituted to treat your OCD, then you may be stuck on it.
Sent: Friday, September 08, 2000 12:26 AM
Subject: Question about RLS
I have had Raynaud's sense 1996 and last month I was told I have RLS. Do you know if these two things have a connection?
I do have the leg jerking at night that keeps me awake until around 5 am, But my question is; Will this cause my legs to cramp while walking to the point of a limp with no jerking? I'll rest for a while and I am fine, I have fell twice now while going down stairs, My knees and my legs also get cold during the day.
Any help please,
As far as we know, there is no connection between RLS and Raynaud's disease. It is possible that vigorous nighttime leg jerking may result in muscular problems during the daytime. I have not seen this problem occur very often.
Sent: Friday, September 08, 2000 8:45 PM
Subject: Xanax addiction and drug warning for RLS patients.
I have had RLS since childhood. It became a severe problem after I had a car accident in 1987 and was treated with of all things, amitriptyline, later Zoloft for muscle pain. Not good. In the last year I ended up losing my circadian rhythm totally, becoming hypertensive, experiencing myoclonus, excoriating headaches etc...you guessed it serotonin syndrome, which was not diagnosed for a year.
I was given Klonopin, codeine and eventually Xanax,to treat symptoms, not the underlying problem. These drugs, many of which are cleared by the same cytochrome p 450 enzymes, competed for elimination causing highly elevated levels of these drugs in my system. Physical addiction to Xanax is a beast. I suggest people try to avoid Xanax. I suggest you not recommend it. Sonata is better but anyone on Xanax is in for a really rough time getting off.
I have been off since March 17th and I thought I would physically die the first month. I lost 25 pounds! My physician said I am lucky to be alive. I was not psychologically addicted, but physically dependent on the drug. Xanax should never be recommended. It took 6 weeks of being off Xanax for Sonata to work. Now I am off Sonata too. RLS may not kill but drugs prescribed to us can kill us. We are different. We are wired differently and respond very differently to commonly used medications.
I am a registered nurse and when I see the garbage being prescribed to people it makes me sick. Mirapex is the way to go! I have been on it since November of 1999 and am back on my bike at 100 miles per week and racing to boot. A good night sleep is still a problem, I don't expect sympathy from those who do not have this disease. I have 8 kids...yes 8 and I work as an RN. I don't work a lot of hours and if I ever had to I would work evenings.
My sleep is best from 2 am on. I have to get up at 6 am to get kids off and that is the middle of my night. I feel true sympathy for anyone who has this disease and has to be to work early in the morning. When we get real and give this disease a real name instead of restless leg syndrome, which every one laughs at, we will get some acknowledgement. People tell me, "Oh I get restless legs too". It is not the same.
I have an adopted daughter with Tourettes. She tics all day and sleeps all night. I tic all night and would like to sleep all day. She has too much dopamine, I don't have enough. Sounds a bit similar. But when I tell people she has Tourettes, they understand. When I tell them I have RLS they laugh. Also, would some one please have the pharmaceutical companies please put warnings on SSRIs, tricyclic antidepressants, antihistamines and other anticholinergics so that people with RLS are not given these drugs by physicians who are not informed! Which is most of them.
I agree that Ambien and Sonata may be better drugs than Xanax in that they seem to have a lot less addictive potential (if indeed any addictive potential) compared to the benzodiazepines. If under no restrictions, I generally prescribe the newer sleeping pills rather than Xanax or other benzodiazepines. Unfortunately, many insurance companies (HMO's and often several non-HMO's) do not cover the newer non-benzodiazepine sleeping pills until after problems have occurred with the benzodiazepines.
Having said my preferences and constrictions, I will say that under proper supervision, Xanax can be used quite safely. I monitor the dose and usage closely and have my patients take regular drug holidays. I have written thousands of Xanax prescriptions without a single addiction problem yet. Many good drugs have potential problems if used incorrectly (or even correctly) but still are drugs that should be prescribed when appropriate. Plain aspirin is a good example of a drug that is extremely helpful and clearly should not be taken off the market, but has been responsible for an incredible amount of side effects including death.
Mirapex is a great drug for RLS and if you read the many letters, you will see how often I recommend using it. There is a small percentage of RLS patients who do not benefit from this class of drug however. Awareness of RLS is so small that it is unlikely that you will see any warnings on medications that they may worsen RLS. We RLS specialists are doing our best to remedy this situation, but it is a real uphill battle. The RLS-drug interactions are listed on our web site for those suffering with the disease to use as a reference.
Sent: Friday, September 08, 2000 7:10 PM
Subject: Substitute for Sinemet.
Many thanks for the help you have already given me. I have a couple of questions which I think you have already answered. Does Sinemet sometimes make you drowsy ? Also what are the 2 drugs that you suggested instead of Sinemet ? Thank goodness I am off the Klonopin. I was hooked, but good. That was a very bad experience. I go to the doctor in Oct and I want to ask him about changing me from Sinemet. Keep up the good work !! This is a terrible condition and we all need all the help we can get.
Frances in Alabama
Sinemet generally does not cause drowsiness, but anything is possible. Also, PLMD which is often associated with RLS can cause poor quality sleep and result in daytime sleepiness which may have to be ruled out as the cause of your problem. Mirapex and Requip are the two drugs that are much better and safer than Sinemet.
There is some concern about Mirapex causing drowsiness, but this occurs with doses of greater than 12 of the .125 mg tablets, and most RLS patients need 2-6 tablets per day.
Sent: Tuesday, September 12, 2000 9:46 PM
Subject: RLS, Sleep Disorders and Questions
I am a 63 year old male and have had sleep problems for about 30 years. The problems range from trouble falling asleep to trouble staying asleep. I have never smoked or consumed alcohol and I dont drink anything with caffeine. I have tried numerous sleeping pills over the years with little success. I have Addisons disease, asthma and an ulcer. I take the following medication for the Addisons Disease: Cortisone Acetate, 25 mg, two in morning and one in the evening, Synthroid, 0.2 mg, one in the morning, and Florinef, 0.1 mg, one in the morning. I take one Claritin, 10 mg, in the morning and two puffs twice a day of Flovent, 110 mcg, for the Asthma. I take one Zantac, 150 mg, twice a day for the Ulcer. I was diagnosed with Addisons Disease about the same time that my sleep problems started. I hate taking all of this medicine but my doctor says the Addison medicine is just replacing what my body does not produce.
I have had a tingling in my legs off and on over the years in the evenings when I was not occupied. This tingling sensation is especially bad on long flights on airplanes. Lately, almost overnight, I have developed pain in the calves of my legs which is worse at night. I can tolerate the pain during the day although it seems to be getting worse. I have also developed an uncontrollable urge to move my legs after being in bed for an hour or two. This may sound crazy but the urge to move my legs seems to occur roughly between midnight and 4:00 AM. Getting up and walking around helps some but I cannot completely get rid of the urge to move my legs and cannot go back to sleep. I am only getting two to three hours of interrupted sleep a night since my wife gets up to go to work at 5:30 AM.
I am generally pretty healthy and in pretty good shape except I feel really exhausted all of the time from the lack of sleep. At this time I do not have the urge to move my legs or any other parts of my body during the day. My physician has been terrific over the years with my other ailments but does not seem to be too interested in this condition. Do you feel that I have RLS? Do you feel that any of the medication that I am currently taking effects my sleep and will it effect any treatment that I might need to take for RLS?
Any help will be greatly appreciated.
Bill in WV
It does indeed sound as if you have RLS. If moving your limbs decreases (or gets rid of) the pain, then it is very definite that RLS is the right diagnosis. None of the diseases or treatments you are taking have any effect on your RLS.
Mirapex or Requip would likely help you dramatically, without bothering any of your current problems.
Sent: Friday, September 15, 2000 5:03 PM
Subject: puffing away!
Have any studies been done about smoking and RLS? My partner is a sufferer of RLS and smokes like a stack. How about eating habits ?
Smoking seems to worsen RLS, so that is one more good reason to quit.
Sent: Friday, September 15, 2000 6:42 PM
Subject: generalized cramping
I've had Restless Leg Syndrome for years (59 years old). Mother also had the problem. Was better when I was on seizure meds. When came off these RLS returned. Neurologist put me on Sinemet. Seemed to help for a while but now at night I'm having more generalized cramping. It's kind of scary and weird such as mild cramping across rib cage under breast. Could this be a sign of a more serious disorder?
It is hard to say if the cramping is really RLS, but if that is how you describe your RLS complaints, then it likely is. Sinemet is no longer considered a good drug for RLS. Mirapex and Requip are much preferred. It is quite possible that the Sinemet might be causing worsening of your RLS.
Neurontin (an anti-seizure drug) also works very well for RLS.
Sent: Saturday, September 16, 2000 3:02 PM
Subject: Lecithin for RLS?
I have e-mailed you before and received a very quick reply. I have been reading letters and one in particular told about taking Lecithin. I take 1200 mg. three times a day for high cholesterol. In a few months I reduced my total cholesterol by 85 points and the "bad" cholesterol by 83 points. But I still have RLS.
I have been on Mirapex, .25 mg. at bedtime and have gone a month with no symptoms. I have no creepy sensations in my legs, etc. Even though I do not sleep well, am awake a lot during the night, I do not have to get up and walk or climb up and down stairs. I am able to lie there without the restlessness.
Thanks for listening.
Lecithin may work for a few RLS sufferers, but most will need a medication such Mirapex to get relief.
Sent: Sunday, September 17, 2000 11:55 AM
Subject: Fibromyalgia and "busy legs"?
Thanks for the great web site with lots of information. My "busy legs" come and go, and currently are here and I'm not sleeping well. I didn't realize RLS was classified as a sleep disorder. Good to know when talking with my doc for a referral. I think I also have fibromyalgia. Any other folks mention fibromyalgia?
Fibromyalgia has been linked to RLS, but we are not completely sure why. It is possible that people who do not sleep well due to RLS may end up with fibromyalgia like complaints.
Sent: Monday, September 18, 2000 12:01 AM
Subject: RLS questions
It is a great joy to read your letters. They give me renewed strength in the ongoing battle to understand and treat RLS.
I have two questions.
1. RLS for me seems to be triggered by something. I can go to bed feeling relaxed, or even sometimes get relaxed on the couch, but at some point in the evening, usually just after I "settle in" to bed, the switch is flipped, and seconds later I am in excruciating discomfort, and am tossing and turning non-stop 'till morning. Once it starts, of course there is no stopping it. What is the trigger? I can't help but think that it is the very act of relaxing itself which triggers the RLS, however I am well aware that you can't "think" your way out of it.
Is finding this trigger the way to a cure, or is my situation unique? It is really like night and day once the switch is pulled.
2. I have some Mirapex and have been taking .25 mg sometimes in the evenings. I am still in denial that I have an incurable ailment that may keep me on drugs for the rest of my life, so I try not to take the Mirapex every night. Is this detrimental to the effects of the drug? Do I need to take it consistently for it to work, or can a take it just a few nights per week? It works somewhat but gives me a gut ache sometimes. Is my dosage O.K.? My doctor doesn't know anything about it, but he let me give it a try.
Thanks again for this site.
We do not know what triggers RLS, but virtually everyone who has RLS finds that it worsens with rest (in fact, that is one of the diagnostic criteria for the disorder). You can certainly take Mirapex on an intermittent basis, but there is no reason to deprive yourself of the benefits of Mirapex by not taking it every day.
Sometime finding a specific trigger may markedly help your RLS, but in general it just helps part of the problem.
Sent: Monday, September 18, 2000 8:04 PM
Subject: Sinemet Fears and Kava Kava question
When my Mirapex trial consistently ended up with predictable nighttime nausea, my neurologist prescribed 1 Sinemet CR 50/200 at bedtime. I have used it 2 nights with fairly good results (some nausea which awakened me, but did not keep me awake). The third night I needed Maxalt for migraine and was afraid to take the two together. Have you heard of any problems with this combination?
Naturally, I am very leery of Sinemet because of rebound and augmentation. In fact it scares me to become so dependent. Are there any other long term side effects? Would you have gone to this?
The Ambien I was using did zonk me, but I would still awaken tired, and my husband reports I kicked at night anyhow.
My last question: The night I took Maxalt-and had restless legs wakefulness, I tried Kava Kava and it seemed to help-but only for 2 hours. Have you heard about this herb and do you have any comments or information?
Thank you again for "being there",
Sinemet should be safe to use at a maximum of one 50/200 mg tablet per day. Higher doses than this have been associated with a very high (over 85%) level of augmentation and rebound.
Consider trying Requip, which is similar to Mirapex, but may have dissimilar side effects.
Kava Kava has helped a few RLS sufferers, but most do not get much help from this drug. There should be not problem with Maxalt and Sinemet, as far as is known in the medical literature.
Sent: Monday, September 18, 2000 10:32 AM Subject: RLS and health insurance
I was recently divorced and am self-employed, so I had to go from my former husband's plan to looking for an individual plan. I applied with Blue Shield and was specifically denied because of RLS. Is there any recourse I have? Am I doomed NOT to be able to buy insurance that will provide an adequate prescription benefit??
Is this legal???? E.D.
Insurance companies will generally look for reasons not to insure people, not reasons to insure them. Generally if you have 3 diseases or disorders, they will strike you out. These disorders can be inactive (such as asthma 50 years ago which has not been active since childhood), trivial or likely not to cause much trouble, such as RLS.
They do not have to insure anyone, so it is their right to decline to cover you.
Sent: Wednesday, September 20, 2000 1:14 PM
Subject: Ambien or Elavil for RLS?
I have to say, right now I am in awe. I had no idea there were other people out there like this. I have to ask a question though. I do not have chronic symptoms all the time. Every now and then I get the aching kicking legs bad. But for the most part, I can't sleep at night regardless. Is it possible to have this syndrome with only noticing it occasionally?
Everything I read on your site describes me. My whole life I have always been restless at night and tired all day. When I was a little kid, my parents wouldn't let me stay in their bed with them ever because I kicked so violently in my sleep. I have had girlfriends tell me that I kick them from time to time. I catch myself having to shake or kick my legs sometimes. And I have woken up from body jerking in my sleep. But in the last few years, I haven't noticed it much, nor has my wife told me that I kick her.
I have been taking amitriptyline for about a year to help fall asleep, I switched from Ambien because I didn't want to become addicted. I still get uncomfortable sometimes and have to move my legs around a lot (I find it helps me a lot to have a few pillows between my legs). Sometimes it's just as simple as uncovering my legs and letting the fan blow on them to feel better. How can I know if everything is just a big coincidence or am afflicted by RLS? Is it possible that I have had this for the past 28 years and nobody ever knew about it? I don't know. Am I crazy?
When RLS is mild, the symptoms can be intermittent. Food, medications, stress, level of exercise, and many other things may influence your RLS and cause it to be better or worse on any given day. The triggers for one person may be different for another. Once RLS becomes moderate (which unfortunately can happen with getting older), symptoms may be present daily, but they may still wax and wane somewhat.
Elavil (amitriptyline) can help RLS (by putting you to sleep) but more often causes worsening of RLS. If it is working for you, there should be no problem using it. Addiction to Ambien is extremely rare.
It is more the rule rather than the exception that RLS goes undiagnosed for many years and is more often discovered by the patient on their own, rather than by their doctors. You are not crazy.
Sent: Wednesday, September 20, 2000 1:49 PM
Subject: RLS all over my body?
I have just found this web page, and can't believe how many of you are out there suffering too. I can only liken my RLS to cold turkey from Heroine or Morphine. My whole body just needs to curl up into a ball. It starts in the legs, arms, then abdomen and chest area. I haven't taken any medication, though I have suffered for many years, I just thought it was one of those things.I am 44, swim every day. My elder sister has it too. We call it the "naggers" Will try some medication if necessary, just wondered if anyone else had it all over like me? thanks Jacqui
The more severe cases can have RLS in the arms (most common) and other muscles in the body. There are many RLS sufferers who have somewhat similar complaints. Medication such as Mirapex or Requip would probably make your life much more pleasant.
Sent: Thursday, September 21, 2000 12:01 PM
Subject: Changing Drugs
An update. My doctor has been doing a great job and is very helpful but the prescriptions drugs are not doing the job. Last night I took twoof the .5 mg Klonopin tablets and 3 Tylenol #3's and still woke up. Do I have to take horse pills to stay asleep?
After I woke up I had something light to eat took one 10 mg sonata and slept the rest of the night. I do not want to keep taking taking Klonopin and Tylenol #3 since they don't do the job and are highly addictive. Can sonata alone keep me asleep with lineament? Can I take more than 10 mg at once? I will talk with my doctor as am truly dismayed that I am not sleeping through the night and taking addictive drugs to do so.
I am feeling better than I did before the treatment but the long term cure could be worse than curse.
Sonata can be prescribed at 10 mg, 2 tablets per night (taken at one time or separately). The only way to see whether this works alone is to try it. Your Klonopin will not wear off for about 3-5 days after stopping it, so if the Sonata works well for only a few days, you will know why.
A Reply from Brad
Sent: Thursday, September 21, 2000 10:44 PM
Subject: RE: Changing Drugs
I am scared to death of addiction and all of the terrible things that it brings. I'd rather gain 100 pounds eating at night. I was told of a police officer we had on the Minneapolis Force who was prescribed perkiest (improper spelling) it ruined his life. He is now doing his second stretch in prison. I doubt that Tylenol #3 would do this to me but why take the chance. If 3 Tylenol #3's and 2 Klonopin tablets can't keep me a sleep what do I need to do. It is frightening.
Thanks for you help. Brad
It is hard to know what will put you to sleep. Three Tylenol #3 tablets are not too different than Percocet.
Sent: Thursday, September 21, 2000 12:25 PM
Hello and thank you for your website and taking the time to answer questions.
I've had RLS for about 7 years, until two weeks ago I took 0.3 mg Clonidine and 1.0 mg Cogentin at bedtime. Most of the time this combination completely controlled my symptoms, however for several days each month it wouldn't work at all. On these days I would have symptoms all day and all night and in my right arm as well as my right leg (I very rarely have symptoms on my left side). On those days I would take Vicodin ES 7.5/750mg. and or used an ice pack on my right leg. I felt I was lucky to have good relieve.
Several months ago I began to have mild symptoms every night and to lose my balance, no dizziness, but if I got off balance I fell if there wasn't something to grab on to. The ice that has helped me for so many years began to cause muscle cramps and the occasional Vicodin was an every night thing and started causing nausea. My Dr. discontinued the Clonidine and Cogentin and put me on Halcion 0.125 mg. During the first 10 days I was all over the place, nausea, headaches, RLS, rapid heartbeat, and little or no sleep but when I did I had very vivid dreams. Yesterday my Dr. change me from Halcion to Restoril 15 mg. Last night I did not have RLS but it took me more than two hours to fall asleep and I woke up 2 or 3 times. Do I need to try Restoril for a few more days? I'm still having problems with balance, but it is better.
I also have Fibromyalgia and take trazadone 400 mg and Prilosec 20 mg at bedtime. I feel like my world has gone on tilt. Without sleep I get very sick very fast, but I'm concerned about taking addictive medications. I'm also concerned about medications that may alter sleep stages. Would a sleep study help shed light on what's going on and maybe lead to better treatment?
Cogentin is a medication that is used in Parkinson's disease, but it is one of the few Parkinson's disease medications that has no role in treating RLS. It has antihistamine side effects that generally worsen RLS. Why and how it helped you is a complete mystery.
Trazadone may help some RLS patients, but has a better chance of worsening it.
Restoril takes at least 45 minutes to work, so it is a good pill for those who have no trouble falling asleep, but complain of not sleeping long enough. The best sleeping pill is Ambien. It is non-addicting, works very quickly and has a short half-life so that you are alert in the morning.
The best drug for RLS is Mirapex or Requip. With one of these drugs you may not even need a sleeping pill.
Sent: Friday, September 22, 2000 7:52 AM
I have written before regarding restless leg and medications my sleep specialist prescribed, which of late included Tylenol #3 to be taken when I needed a break from the Mirapex side effects of nausea and insomnia. To make a long story very short, here's the "rub" so to speak. Years ago I had a substance abuse problem, addiction to certain prescription medications, including pain medications. I went through in-patient, out-patient, aftercare treatment program, AA. You name it, I did and continue to do whatever is necessary to avoid the abuse issue.
My sleep specialist has always been aware of my history and recently felt comfortable enough to prescribe the Tylenol #3, but my primary physician says "No way is this lady to have narcotics". His recommendation: trazadone. Is this an acceptable RLS medication?? To say I'm angry, embarrassed, and humiliated is an understatement. What to do???? (there must be some humor in this situation, but can't find any at the moment!)
Thanks for "listening",
Trazadone as just as good a chance of worsening RLS as improving it. If you have been stable (not having to increase your dose of Tylenol #3) on your narcotics, then your primary care doctor should not be worried. You may want to consider alternating the Tylenol #3 with Ultram, which often works quite well and may calm some of the fears of your doctor.
If your primary care doctor will not treat your RLS properly, then you must find another one who will. You may also want to try Requip instead of Mirapex. There is a chance that it might be as effective as Mirapex with less (if any) nausea.
Sent: Friday, September 22, 2000 10:52 AM
Subject: how much Mirapex?
I have worked my way up from one 0.25 mg tablet to three of them each evening. Still only 2-4 hours sleep, and I still find I need to take 1, sometimes a second, 1/2 Percocet to quiet the legs.
How much more can I safely increase the Mirapex? Would Oxycontin be that much more preferable over the Percocet? I hate to get heavier into the narcotics.
It is difficult to say what the correct dose of Mirapex should be for each individual patient. The average dose is 2-5 of the .125 mg tablets (.25 mg - .625 mg) compared with your current daily dose of .75 mg. I do have many patients on much higher doses, but the dose should be increased very slowly (by no more than .125 mg increments per week) until the effective dose is reached. You should do this under the supervision of your own doctor.
OxyContin and Percocet have the same active ingredient (oxycodone), but the OxyContin comes in larger doses and is slower release. Dose for dose, you should probably not notice a big difference between the two.
Sent: Friday, September 22, 2000 1:10 PM
Subject: Buspar for RLS?
Do you know if Buspar has the same effects on RLS as the anti-depressants (i.e., increases the syndrome)?
I saw my internist doctor this week. He conducted several blood tests for RLS which all came back normal. He's not sure if I've always had RLS and Klonopin was just disguising it or if taking Serzone a few weeks ago triggered the syndrome. I never had such a thing in the past! I started taking Klonipon again 4 days ago (0.5mg at bedtime) but it doesn't seem to be helping me. Before I decided to come off Klonopin, I was taking 0.25mg at bedtime for chronic headaches which was working.
Although I don't have the urge to shake my leg now, I' have a very uncomfortable tingling feeling in my right leg for a week now and I feel like it's driving me nuts. My doctor suggested I try Buspar along with Klonopin. I'm afraid to take it fearing I will have the same reaction to the anti-depressants. He also referred me to a sleep specialist. I have an appointment next week. I'm not sure what to do. In the last week, I have been prescribed Serzone, Buspar, Ativan, more Klonopin and Sonata.
Buspar is an anti-anxiety medication, but it is not well understood how it actually works. It does have some mild dopamine D2 receptor affinity (similar to Mirapex/Requip, but of much lower magnitude) andd this might theoretically give it some benefit for RLS. However, this drug has never been used for RLS, nor have I ever heard of anyone getting any benefit form using Buspar for RLS.
Mirapex or Requip are much better drugs for RLS.
Sent: Friday, September 22, 2000 7:19 PM
Subject: RLS better with Mirapex.
I've had RLS for about 2 years. I had 4 pregnancies in four years and have had surgery for varicose veins al which I have read is a contributor to RLS. I work as a hairdresser and I thought the discomfort I felt in my legs was from standing most of the day. I was taking up to 6 Advil before bed and that helped for a while but about 8 months ago nothing was helping and I was getting about 2 hours of sleep a night. I would be so tired and then lay down to sleep and be unable to relax.
I went to the doctor and in tears told her how I was not sleeping and she immediately said that I had restless leg syndrome I had never heard of it before she prescribed Mirapex which is used for Parkinson's disease I take one pill about an hour before bed time and it calms my legs down. I have been sleeping through the night which I haven't done in years. I also take 1000 mg of calcium before bed too. I also have found a hot bath helps and wearing socks to bed helps.
I hope this information helps someone,
Sent: Saturday, September 23, 2000 8:03 PM
Subject: Sinemet side effects? (see previous letter above sent Monday, September 18, 2000 8:04 PM )
I just started on Sinemet CR this week for RLS-I took the 50/200 for 2 days, then because of mild nausea at night, was able to decrease to the 25/100 with no nausea at all, and while I still awaken frequently during the night and dream a little more than usual, I am able to go right back to sleep.
My question, though, is that the last 2 days I have had a strange headache and feel flu-like, could this be related to the medication? No one else I know has the flu yet around here, and I have had a low white count for years (3.0-3.6 usually), not really explicable by any reason other than my poor sleep patterns. I am reticent to continue if Sinemet could affect my immune status.
Thank you for your help,
It is always possible that any new medication can cause headache or flu-like symptoms. These are not side effects that I have seen often (or at all) with Sinemet. The only way you can be sure is to stop the medication and then restart it a week later and see if the problems go away and come back. Sinemet does not affect you immune system, so don't worry about that potential problem.
As you have had trouble with Mirapex, you may also want to consider Requip.
Sent: Sunday, September 24, 2000 2:59 PM
Subject: Bell's Palsy and Klonopin for RLS
I have recently been diagnosed with RLS. I am thankful for finally understanding what has been going on with me for so long. I was so excited about taking my medication until I read about all the possible side effects, etc. . I couldn't start the Klonopin until after my other medication for the Bell's Palsy I acquired for the second time, which gave me time to do my research. I keep patting myself on the back for actually taking the time to research it first. I can't imagine why my doctor did not even bother to inform me of the need to take holidays and such. That's a whole other matter.
The question I have is how or does my bells palsy correlate with the RLS. Does the inability to produce proper amounts of dopamine have any relation to my susceptibility to getting the Bell's Palsy? I have been taking supplemental vitamins off and on, inconsistently for the past four years, since the preconception of my daughter. I wanted extra folic acid especially. I plan to continue taking these vitamins on a consistent basis to see its possible effects on the RLS. To what extent, do you think, does the inconsistency of taking these vitamins be contributing to the RLS? I am still new at all this so I am really hopeful that medication will not be helpful in my case.
From reading other cases, I feel my case is mild enough to try other alternatives before trying the sedative, especially the Klonopin. Should I ask my doctor for the Ambien prescription anyway, if all else fails? I don't want to start with anything too heavy especially since I am a light weight, and barely take pills for a headache or menstrual pain. I'm scared about all this, but am thankful for your site. You've certainly been very informative and I want to tell you how much I appreciate you.
Lisa F., 35-year-old, mother of one.
First of all, there is no known relationship between Bell's Palsy and RLS. Both diseases have unknown causes, so it can never be said definitively that there is not a link, but it is very unlikely. Vitamins do not help Bell's Palsy nor do they help RLS unless a vitamin deficiency has first been demonstrated by blood tests (B12, folate or iron, for example). I would not worry about whether or not you have been taking your vitamins regularly.
Drug holidays are somewhat controversial and not used by most doctors. I have found them to work well for sedatives and narcotics when treating RLS patients, so I recommend them.
Klonopin is not my favorite drug as a high percentage of patients get daytime sleepiness and as it has such a long half life, a week long drug holiday would be necessary. Ambien (you can even start with 1/2 of a 5 mg pill) is a much better drug for mild RLS. If you find that you need to take a sleeping pill daily, then a drug like Mirapex would be a better choice.
Sent: Tuesday, September 26, 2000 9:04 PM
Subject: Cure for RLS
I've emailed several times over the past two years. I'm now happy to report that between my excellent neurologist and myself, we have greatly reduced the severity of my RLS/PLMD. (My RLS symptoms were excruciating and my PLMD was clocked at 210 per hour.) In my case, the lifelong bout I've had got much worse the past five years because my Ferritin level was virtually non-existent (3). Now it is up to around 50 and climbing.
Apparently, that was the catalyst for my horrible symptoms. Now I just take 5 mg of Hydrocodone at 6pm and 100 mg of Ultram at bedtime. So far, so good. I know how much you suggest Mirapex and it did work for me, but it was making me very sleepy and grouchy even at a small dose.
Will they ever be able to come up with a cure if everyone has such different responses to medications? Can they find a cure if different things cause it to exacerbate? It seems very complicated. I subscribe to the RLS Newsletter and I'm behind them all the way. It just boggles my mind at how complicated this whole syndrome is.
Good luck and keep up the great work,
Mirapex is one of my favorite drugs as it works so well for most, but I am not wedded to it. If there are problems with it (such as sedation) then using alternative drugs is fine. Your regimen is quite reasonable and if used carefully (just take as little as you need to take care of your RLS symptoms), then it should continue to work well.
If Mirapex is causing sedation, Requip will often work well as an alternative.
Most diseases are confusing until the mechanism is understood.
Sent: Wednesday, September 27, 2000 10:37
PM Subject: Sleepy with RLS/PLMD
I have recently been diagnosed with extreme PLMS (a hundred forty arousals in six and a half hours of sleep) and also suffer from RLS and occasional migraine. I was so tired, I could not function well mentally or physically despite several very long daytime naps. Finally, I asked for a sleep study and started treatment.
I only learned by comparison how disoriented I was becoming. Once I felt alert even for an hour, I realized that I had not been alert for what seems like months. I was also quite manic during the day, an attempt, I think, to keep myself alert. I am still somewhat troubled by what I consider a kind of hyperactive behavior pattern, but I generally manage it. It's like I can't be still unless I am concentrating on something.
Klonopin and Mirapex made me very drowsy and mentally muddled. I have moved on to Requip and am currently taking only one .25 mg pill a night, along with an antihypertensive called verapamil for migraine. I have been on Zoloft for six years, and the PLMS seems to be about six months to a year old, so I am staying on the Zoloft for now. It seems that the Requip is helping, although I have noticed my appetite has dropped and I am getting headaches that eventually turn into migraines if I can't treat them early on with Imitrex and/or Percocet. I am hoping if this is a side effect it will go away.
I am also taking Ambien to get to sleep, and will occasionally treat the RLS during the day with Tylenol #3 or a half a Percocet if I am at a seminar or on a plane or somewhere that I have to be still. Can I expect to no longer need the narcotics or Ambien if I increase the Requip? Should I ask my doctor to try Ultram instead of the Tylenol #3/Percocet? Or can I mix the medications? I hate to up the dosage and deal with any more side effects when the program I am on is finally even somewhat working.
I am more alert more often, I am able to be aware of hyperactive behavior before I get too wound up, I can concentrate on work, and my naps are only lasting about forty minutes before I naturally wake up (hurrah!) Narcotics have never made me sleepy. In fact, I suspect because they help the RLS, I am able to function better and feel more ability to concentrate with alert relaxation after I've taken a pain killer. I am dealing with what I suspect are side effects, however.
I have had both more frequent sleep paralysis episodes and during some of them, I have intensely disorienting dreams in which I am bombarded by sensory input including extreme color saturation, sound, movement and even scope (big panoramas). I try to wake up but can't, and keep getting stuck in what seems like a whirlpool of sensory input that is quite as scary as a demon on the chest. What is most remarkable, really, is the color saturation of the dreams. Does Requip increase sleep paralysis? Do narcotics? Does anything decrease it?
Also, before being treated I noticed I was talking faster and sometimes stuttering. Now I find I have some occasional slurring of speech instead of stuttering a few times a day. Kind of tongue tripping. Could this be related to the drugs I'm taking? Or am I still not getting enough restful sleep?
Thank you for an incredible resource. As one of the letters stated, I had NO IDEA what was going on until I started reading, and then I felt like someone (many people, actually) was describing me perfectly.
You are on a very small dose of Requip. Most RLS patients need between 2-5 tablets per day. You can certainly increase your dose (with the supervision of your doctor) so that you should not need any additional medication. Zoloft can certainly worsen RLS/PLMD, so it was a good idea to see if stopping this medication helps.
For your daytime RLS, Tylenol # 3, Percocet or Ultram are equally good if you do not get drowsiness with the medication. Requip during the daytime is actually better, but whatever works for you is fine.
There is another problem about your case. The amount of arousals that you have (and I am assuming that most of these arousals are coming from PLMD) are only a mild to moderate level of arousals (23 arousals per hour) and should not be causing the degree of sleepiness that you are describing. With your description of sleep paralysis (should not be affected by Requip) and what sounds like hypnogogic hallucinations (the vivid dreams which continue while you are awake in your sleep paralysis) the possibility of narcolepsy should be ruled out.
To rule out narcolepsy, a repeat sleep study (while on Requip, but not on any sedative medication) should be done, followed by an MSLT (5 nap studies) the next day. You may be surprised that your daytime sleepiness is not due to your PLMD problem, but by something else such as narcolepsy.
Sent: Thursday, September 28, 2000 12:07 PM
Subject: RLS - Yikes
Well, my neurosurgeon has tried (since last October) to try and find me a cure and "nothing" is working. I read your list of "descriptions" people gave for RLS & I have them ALL & am miserable. Now he wants to put me on Mirapex but says I cannot drive for two weeks as this could cause: hallucinations, sleep attacks while I'm driving and upset stomach. I would like to know if others have had these side effects with Mirapex because this may be my last resort.
Thank goodness I have a wonderful and patient husband who doesn't mind sleeping with a jumpy wife. Any advise on Mirapex would be very helpful.
Mirapex has been associated with sleepiness, but this is generally at doses higher than those used for RLS. Most RLS patients use between 2-6 of the .125 mg tablets per day, while the problems with daytime sleepiness are more common at doses over 12 of the .125 mg tablets per day. There have been some cases of sleepiness at lower doses, but in my practice, that is very uncommon.
Sometimes the only way you can tell is to try the drug and see what happens, but again, in my experience, this has not been a big problem in my RLS patients.
Hallucinations and upset stomach are much more uncommon side effects. I have not seen any patients with hallucinations, although they may be more common in older patients. Upset stomach may happen in a few RLS patients with this drug, but it is usually transient.
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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