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Date: Tuesday, March 16, 1999 1:48
PM Subject: RLS
I am a forty-three year old male that has experienced the symptoms of RLS since my early twenties. I have also had a two level anterior cervical fusion (C5/6, C6/7) about eight years ago. This seemed to amplify the RLS symptoms. I currently am taking amitriptyline (25 mg), Tylenol #3, and Soma prescribed by my family doctor. The amitriptyline has helped a great deal with chronic pain and the migraine caliber headaches I get from sinus trouble or any muscle tension in my head or cervical area.
My neurologist initially prescribed Sinemet for the RLS. It helped a little at first and then the symptoms began to occur during the day and became worse at night. Currently has me on clonazepam (1 mg). This medication makes me very dopey the next day and almost eliminates my memory when taking it. My RLS symptoms does seem to be controlled by it though. As a engineering student in my final semester the memory loss presents a large problem.
After looking over the medications listed on your site I see that diazepam is listed. I have taken diazepam several years ago after a truck wreck and a couple of motorcycle accidents. It didn't seem to blank my memory as bad as does the clonazepam. Is it generally as effective for RLS as clonazepam?
I noticed, on your web page, that amitriptyline can increase the symptoms of RLS. Is there any medication that would help with the headaches without aggravating the RLS?
Thank you for providing this site. It a great resource for information on a condition many people, physicians included, haven't heard of.
Chris
Medical Reply
The amitripyline is an antidepressant which seems to be useful for pain management. It may or may not worsen RLS. If it is helping your pain problem from your neck, then I would not try to change this.
You are having the classical problems with Sinemet and Klonopin, which is why we no longer use these drugs for RLS. You are getting the dreaded augmentation and rebound from Sinemet. Have your doctor change you to Mirapex, which should treat the RLS more effectively and eliminate the above problems.
Diazepam (Valium) does work well for some RLS without the common daytime sleepiness that many RLS patients experience with Klonopin. Xanax or Ambien tend to be even shorter acting with significantly less chance of not being alert in the daytime.
Date: Wednesday, March 17, 1999 11:23 PM
Subject: Varicose veins, RLS, and climate
I have suffered with RLS for many years. It has been very hard. I also have severe varicose veins. Do you know if these two conditions are connected?
Also, do you know if it can be connected to the weather or to climate? It seems like I am much worse in the winter and in the cold.
I would love to know about other RLS sufferers experience about this.
Thank you,
Anna A.
Medical Reply
There is some medical evidence that varicose veins may be related to RLS. Surgery for this condition has helped a few patients (see our RLS Treatment Page ).
Some RLS sufferers have noted an effect of weather on their RLS. This is a very inconsistent effect.
Date: Wednesday, March 17, 1999 1:34 AM
Subject: 7th February 1999
I've been reading about RLS for the first time. My symptoms aren't exactly the same as some of the writers and I feel fortunate that I don't get the crawling feeling, what I do get is a feeling of restlessness when I am tired or sometimes when I am at the theatre. My legs just start jumping and I can't stop it.
It seems worse in the summer when the temperatures are high. A lot of the time it wakes me up and I find it intolerable and have to get out of bed. I find if I drink coffee I'll suffer. I haven't taken any medication so far, but what I do take is a glass of wine. I know that probably isn't a good solution but is seems to settle my nerves down and relaxes me enough to put the jumps to bed. When I find I have no wine I take a glass of milk and this helps.
It's quite strange but all 3 sisters suffer the same as me.
Kathryn
Medical Reply
More than half the RLS sufferers have a family member with RLS. It is quite common to have worsening of RLS with changes in weather or caffeine.
If you do get worse, then there are lots of medications that will help.
Date: Wednesday, March 17, 1999 5:50 AM
Subject: Restless legs
Thank you for your website. I first discovered it when I was having a severe episode of RLS and got out of bed in disgust and decided to surf the web for, what more appropriate subject, RLS information.
I have had RLS since I was a teenager. I used to lie in bed at night and my feet would be tapping out what I then thought was the rhythm to some current rock music. As is usually the case, it has gotten worse with age (I'm now 48) and since I began taking Prozac a couple of years ago. My husband also testifies to the fact that I'm playing rugby in my sleep (he's English), i.e., the periodic limb movement thing.
I never knew this thing had a name until I happened to hear a radio talk show about sleep disorders a couple of years ago. A guy called in to describe his symptoms, and I thought, "That's me!" My husband calls it the fidgets. I call it "spilkes", a Yiddish word for being antsy. I have a very hard time on long car trips and long plane trips are a disaster because the seats are so cramped. On transatlantic flights, everyone's asleep, including the crew, and I'm up pacing the aisles in the dark. It's not fun and it makes the jet lag a lot worse.
Until recently I've never taken anything for RLS since I figure it's bad enough I'm taking the Prozac and I don't want to rattle when I walk from all the pills I'm taking. But I recently had total hip replacement surgery and since then the RLS has truly become a waking nightmare. I have to sleep on my back so I can't flop around as I usually do to alleviate the symptoms. I can't actually "walk" very well because I'm still non-weight bearing on my operated hip, so getting up and walking around at night is not an option. I do get up sometimes and work or play at the computer, and eventually I am able to get back to sleep, but that gives me about 3 or 4 hours of sleep a night. Then when I try to nap during the day, I get the RLS again! So I can't even make up for it then. I really wish I could sleep!
I have a new internist who prescribed Klonopin 0.5 mg. It seemed to work at first, and I had two or three miraculous nights when I slept through the night. But then the RLS came back as bad as ever. He has now recommended 1.0 mg, or double the original dose. I tried that last night and I was able to sleep on and off, but with a lot of "off".
I'm hoping that when the surgeon eventually okays my sleeping in any position I like, the RLS will abate to a tolerable level. I'm grateful for the information on ice cream as an exacerbator, and herbs, vitamins, minerals, etc., for treatment, because I really hesitate to take these heavy-duty medications such as the ones for Parkinson's.
My need to move/stretch/wiggle my legs seems to originate in the groin area. Is this at all common? And is there some reason why orthopedic surgery in general, or hip replacement in particular, should worsen the RLS?
Thanks again for providing this forum.
Irene K.,
New York, NY
Medical Reply
It is very common that some trauma to the body, such as surgery (most often back surgery or injury) is the trigger for starting or worsening RLS.
Klonopin or any other sedative, (we like Xanax much better, as it is shorter acting), only helps mild RLS. If the RLS is severe enough, it will not work. The Parkinson's disease medications should not be considered "heavy duty". If given correctly, side effects can be avoided.
Date: Thursday, March 18, 1999 12:26 PM
Subject: Remeron and RLS
About three years ago, I was diagnosed with generalized anxiety disorder. Recently, I was also diagnosed with depression. I also have chronic neck and sciatic pain. I'm extremely sensitive to seotonergic medications and was completely unable to tolerate even fractions of therapeutic doses of various tricyclics, SSRI's and Serzone. Last month, I had six ECT (electroconvulsive therapy) treatments in the hope this would "re-set" my brain and allow me to better tolerate medication.
I've been on Remeron for about a month, gradually increasing the dosage. Right now I'm on 22.5 mg per day, although my psychiatrist would like to get me up to at least 30 mg. Unfortunately, I've discovered that taking 22.5 mg at bedtime gives me not only what appears to be RLS but generalized muscle twitching all over. I feel restless in general and am unable to sleep. This despite the fact that Remeron is supposed to have a strong sedative effect.
I've also had trouble with cramping in the calves -- something that has never been a problem for me in the past. However, I found that staggering the dose resolved the RLS and muscle cramping. If I take 7.5 mg. around 6:30 p.m. and the rest at bedtime, then I'm OK. The insomnia problem with Remeron has not resolved, however, and this appears to be a paradoxical reaction.
I'm also taking .5 mg of Klonopin at bedtime. I decided to write after reading about one person's experience with Remeron curing RLS. Since I concede a great sensitivity to medication, however, I think it possible my RLS response to Remeron may be the less typical.
Thanks,
G.D.
Medical Reply
All the antidepressants can either make RLS worse or better. Both reactions tend to be equally common, so your reaction is not unusual.
Date: Saturday, March 20, 1999 1:16 PM
Subject: RLS in the back?
My dad has suffered for about 10 years with ALL of the symptoms described in RLS. The problem is all the symptoms appear in his lower back! Are you aware of any other person who has RLS symptoms in this way? He would be so glad to know he was not alone.
Andi G.
Medical Reply
Any muscle can be affected with RLS. It is much more typical to have the legs involved, then it may spread to other muscles, including muscles not in the four limbs (such as the chest wall, neck and back).
RLS involving only the lower back would be very unusual, but not impossible.
Date: Sunday, March 21, 1999 9:05 PM
Subject: RLS
Three observations from a RLS sufferer of many many years. Glusomine makes RLS worse. When taking Sinemet, take a smaller dose more often.Such as 1/4 tablet every 2 hours.
Get involved in a standing up project which also would draw your thinking away from your discomfort.
DLR from MO
Date: Sunday, March 21, 1999 11:55 PM
Subject: restless legs?
I have been experiencing a strange movement in my right leg only when I attempt to fall asleep at night. I have noticed this came around the time I was taking anti-depressants, but for a while, I have been off of them (Prozac). From what I have been reading, my symptoms are minor. I don't have a cramping sensation, nor do I feel itchiness.
I have a very sudden burst of electrical brain energy and then the ankle starts to twitch for about 2-5 seconds. This will happen in intervals as I am attempting to go to sleep, or fall asleep in that almost there state. It bothers me enough now, that I almost anticipate when they happen and say to myself "hey body, stop it"...but no good.
Interestingly enough, I have two autistic children, one of which has a metabolic disorder in his energy metabolism(too much pyruvate and lactic acid...ding ding!). He also experiences a morning episodes of seizure movement who knows what....he will get up and within seconds sort of hyperventilates and then sit down then his legs (both sides) tighten at the hips and contort his legs as they writhe and tick for about 5-10 minutes, and this happens like clockwork every morning.
We have done EEG's, blood sugar tests, renal fatigue....even anti-GAD to see if he had stiff man syndrome....so you see I can sort of make a familial link here....although this has never happened to me until about 3 years ago when I started on the medications for depression (thankfully I don't need them anymore)...but now I start to think my body is turning on me for messing with my brain chemistry?
Do you have any thoughts?
Kathy B.
Medical Reply
Antidepressants can cause a lot of changes in the brain. They can also make RLS worse or better.
Date: Monday, March 22, 1999 10:09 AM
Subject: My mother's RLS
Was relieved and excited to find this site. My mother is 72 and has RLS. To complicate this, she is almost totally blind due to RP. She has experienced back pain for several years and I have taken her to pain specialists, i.e. injections, to no avail.
Klonopin, she says, does not work for her even though her internist has prescribed this. She had a severe episode in the hospital right before surgery and the anesthesiologist had to go ahead and knock her out. She also had another episode Saturday late and we had to take her to the hospital and they had heard of RLS and only knew to give her Ativan and then Demerol to calm her down. This of course knocked her out for a whole day.
Any input would be helpful. Thanks for your time.
Cheryl F.
Medical Reply
You should recommend to your mother's doctors to try Parkinson's disease medications (Mirapex, Requip) for her RLS. It is generally quite effective for RLS. The sedatives and painkillers should be used very carefully in older patients.
Date: Tuesday, March 23, 1999 4:30 PM
Subject: Possible importance....???
I've been an RLS sufferer for ... well, I can't remember a time when I wasn't. However, no doctor I went to ever diagnosed it correctly; when I was a child my parents were told that I was hyperactive and disruptive, and as an adult I was told it was all in my head. Which always struck me as being hilariously off the mark, as my head is nowhere NEAR that portion of my body ... but I digress.
I used to suffer from RLS in both legs, often to the point of going without sleep until I just dropped from the sheer exhaustion. Something happened that changed this, and I was hoping that someone could shed some light on it. I was working as an auto mechanic (back in my younger days, when I had a full head of hair), and I drove to work in a Chevy van so that I could carry my tools with me for free-lance work. (Trust me, this is relevant).
One night I was driving home from work, and I got caught in a traffic jam. It was a cold, rainy winter evening. After about a half hour I came upon the cause of the traffic jam, which was a stalled vehicle in the right lane. They guy was standing next to his car, so I pulled up behind him and got out to see if I could help.
After peeking under the hood, I went back to get my tools out of the van. I opened the sliding door and stepped inside. However, my foot slipped and I landed with all my weight on my knee on the edge of the doorsill.
Needless to say, I didn't fix the guy's car. I also didn't go to a hospital, not having health insurance at the time. I strongly suspect that there was moderate to sever ligament and/or tendon damage done at the time.
The knee healed fine, and there have been no ugly after effects, for which I am eternally grateful. About a month or so after the accident, however, I began to notice that the RLS in my left knee ... the one that had been injured ... was gone.
That was in 1985, and I think the RLS has reappeared in that leg maybe ten times since then. Bear in mind that it appears in my right leg on a nightly basis.
I realize that it would be stupid to suggest that people go around knee capping themselves in an attempt to get some undisturbed sleep. Yet I'm curious as to what may have happened to get rid of the RLS in that leg, and if there was some way to therapeutically mimic this effect of my injury.
Basically, it comes down to this: I inadvertently found something that seems to be a permanent, albeit extremely drastic, form of treatment, and I would like to figure out a way to make this available to others who suffer from this without having to resort to baseball bats, tire irons, etc. Maybe it's something that could be done surgically, with a minimum of discomfort.
Of course, I may have just been extremely lucky that I didn't end up in a knee brace for the rest of my life.
Be that as it may, I would like to offer what limited services I have to help those who suffer from this. If someone reading this is in the medical profession and would like to study this further, I can be reached at dn3@hotmail.com
Thanks.
Medical Reply
Trauma to the body can often be the trigger of RLS, but this is the first that I have heard of trauma relieving it. RLS can come and go for no obvious reason or for some strange reasons (such as yours).
Date: Wednesday, March 24, 1999 8:16 AM
Subject: RLS
This is most amazing. I was reading an article in USA Today about insomnia and RLS was mentioned. I did a search on yahoo and find your site as well as others.
Now I do not think I have this chronically however for years I find that when I go to bed I can't keep my legs still for more than a minute (my wife says 'stop moving your legs I'm trying to sleep!'). In the past I tried quinine - sometimes this seems to help. Massager. Get up and walk around. Massage them with your hands. Get your wife to massage them. Put on lots of Ben-gay. Bang on them with your fist real hard (especially the calves).
If someone like me has what I call not chronic or severe, but recurring problem - suggestions...
take a walk in the early evening
keep a massager by your bed
try quinine
don't drink coffee after 12 noon
try dreamytime tea (chamomile) at bedtime
I suppose these are not new suggestion but I offer them anyway. I am amazed to find that other people experience this same thing!
Medical Reply
It does sound like you have RLS, which so far is only of a mild to moderate nature. We will post your suggestions for others to read.
Date: Wednesday, March 24, 1999 9:33 AM
Subject: Drug Holidays
I took your advice and used Ultram for a drug holiday from Tylenol with codeine, once for two nights and once for three nights and it worked well. I have taken codeine for over 25 years and have built up a tolerance. It takes longer to take effect and does not give me as much relief as it used to.
Would a longer drug holiday, say one or two weeks using Ultram instead make the codeine more effective for me again? Is it alright to alternate the two drugs for a week or two at a time? Thank you,
Sadie S.
Medical Reply
If the Ultram works well, then you should take a longer drug holiday from the codeine. Once you get tolerant to a medication, such as codeine, you should take a drug holiday of at least a week or two.
To prevent tolerance from occurring in the first place, only 2 days off the drug are needed every two weeks. In your case, with a history of tolerance to codeine, you might even want to alternate 3-4 days per week on Ultram and 3-4 days per week on codeine. Some patients even alternate on a daily basis.
Date: Wednesday, March 24, 1999 2:19 PM
Subject: Side Effect of Mirapex?
MIRAPEX has indeed gotten rid of the RLS and PLMD. However, in the middle of the night my legs start to ache so that I have to stretch, get up, walk around, perhaps catch up on ironing my husband's shirts. It's nearly as distressing as the restless legs. I found one other woman my age with this same problem through an e-mail support group.
Do you know of others with this problem? Any idea what to do about it?
Jean L.
Medical Reply
It sounds as if the your RLS is not really gone but rather the character of your RLS symptoms has changed. The aching of your legs that occur in the middle of the night are most likely due to your RLS, especially as they are relieved by stretching or walking around.
You might want to discus with your doctor about increasing your bedtime dose of Mirapex to prevent this new problem.
Date: Wednesday, March 24, 1999 4:34 PM
Subject: RLS
Some 30+ years ago I had some severe episodes of RLS to the extent that I was up walking the floor all night. Thank God these past after a few years! I thought that was it!
In February , 1997, I was hospitalized for hypertension and congestive heart failure. As part of my treatment I was given a number of drugs, including BetaPace to control my heart beat rhythm and blood pressure. While there, RLS started up again and the Doctor prescribed Klonopin.
I went to a neurologist at home who did no more than experiment, and he admitted he knew little about treating RLS. He prescribed Klonopin, then Sinemet and Neurontin and Ambien. None had any affect on my RLS, which affected me day and night!
When I returned home my cardiologist gradually increased the BetaPace from 1 per day to 4! I was also taking other drugs to control blood pressure. Even though things improved the doctor still refused to reduce my medications. I got so I could not travel any where in my car or plane. I couldn't even walk but a short distance. The RLS required that I stand up and walk around at least every few minutes. My speech was even slurred. I was on the way "out ".
Finally the doctor eliminated BetaPace. Well, in two weeks I was back to normal and felt like a normal person, no more RLS either. Within a few weeks, the doctor notice my heart rhythm was off. So he put me back on some medications in the same family as Beta Pace. All my problems have returned, including RLS. I'll be changing doctors soon!!
Medical Reply
Beatrice has both beta blocking properties (like Inderal) and cardiac action potential duration prolongation properties. It seems to have helped your rhythm and blood pressure problems while worsening your RLS problems. Strangely enough, Inderal has actually helped RLS in given cases.
You should be able to find a cardiologist who will control your heart rhythm and blood pressure with drugs that do not worsen your RLS.
Date: Wednesday, March 24, 1999 4:55 PM
Subject: RLS
I found your web site while looking up some info on medications for my Autistic son. I have had RLS most of my life..I stumbled across the RLS Foundation web site a year ago and about fell out of my chair... Printed out a whole boat load of info and took it to my physician. Fortunately he did not think I was nuts and after reading about RLS I realized that I wasn't either!
Here is a summary of the medications I/we have tried and their results..
Quinine (Quinnam) : Very little help
Benadryl: aggravates it severely
Neurontin: Also aggravates it severely (surprises me since it seems to help so many
people)
Alcohol: Not a medicine but aggravates it so I abstain
Opiates: Tend to mask it somewhat but with side affects...addiction etc.
Ultram: Been on this for a year and it seems to work very well. 50-100 mg per day.
Have actually reduced my dose over the last 6 months. I do wonder and worry about the effects of taking it over a long time period. I would be interested to know how the long term risk of taking Ultram compares with other medications...
By the way I think the best description for me is an irresistible urge to move the legs...I also frequently have it in my arms.
Dan S., age 39,
Huntsville Alabama
Medical Reply
Your response to the medications that you listed are very common to RLS sufferers (except that Neurontin usually helps, rather than worsens RLS). Ultram can be taken for long periods of time by many RLS sufferers, but there still is a small concern about tolerance developing. As you are reducing your dose, it sounds as if tolerance may be less likely in your case.
It might still be worthwhile to consider taking Mirapex at low dose, which might further reduce your need for Ultram, or even eliminate it.
Date: Friday, March 26, 1999 1:14 PM
Subject: restless legs
My mother has restless legs and she was wondering why it only occurs between 11:00 p.m. and 4:00 am..Never during the day...Also, are you familiar with a newsletter that has up to date info she can order.
Thanks,
Carol
Medical Reply
It is very typical for RLS patients to experience worsening of their symptoms in the evening with improvement in the early morning. This circadian (24 hour) pattern of RLS is not understood at all, despite the fact that it is so common.
To get the RLS newsletter, go to the Restless Legs Syndrome Foundation, Inc. which is an excellent source of information on RLS.
Date: Thursday, March 25, 1999 2:40 PM
Subject: Restless Leg plus more
Here are my symptoms. My legs just want to act by themselves. I can't sit long in a movie theater or watch a play without moving and moving and moving. The poor people who sit behind me! It's like there's a little being inside my legs that want to operate them for me.
A new symptom that may or may not be related is tickling in my back on one side. I feel my clothing more on that side when they touch my back. When I sit I feel a pulse of tickling from within. It reminds me a little of the feeling you get in the pit of your stomach when you are frightened. It's a tickle if you think about it. I've had it since just after Christmas (the tickling) and my doctor said it is a neuropathy and has prescribed Neurontin (which doesn't seem to do much but make me feel drunk). Also I am applying Zostrix cream to that side. It's making me crazy. I thought the restless legs was bad, but now this.
When I was a kid I had dreams where I would be walking to an amusement park ride. And I'd always say, "oh no, not this." And I'd get on the ride and it would go faster and faster and I would feel a tickle in my side so bad I would wake up. Now it seems like the tickle is here to stay.
Is there any medication that could help some- thing like this but that will not make me feel groggy. I hate feeling that way. If you know of any, I'd be very happy to try it.
Thank you,
Gayle W.
Medical Reply
Your "tickle feeling" may possibly be an RLS variant. It is very difficult to tell, but it certainly would be worth a trial of Parkinson's disease medications (Mirapex, Requip). These medications will not make you groggy, and if they work, it is very likely that RLS is the correct diagnosis.
If the above does not help you, then it may be quite difficult to find an answer.
Date: Saturday, March 27, 1999 3:50 AM
Subject: Restless legs
I have had restless legs since I was a teenager and it has become particularly bad. However I have discovered something which really has helped me. In fact after suffering for 20 years and not being able to get to sleep I finally have found restful and relaxing sleep.
I have increased my water intake to 8 glasses a day and make sure my salt intake is adequate to compensate; i.e. 1/2 teaspoon per day in food. I eat lots of raw veggies and fruit with my vegetarian diet. I make sure I have adequate magnesium, brewers yeast, lecithin and very little sugar. I keep away from bad fats and oils and only have olive and fresh flax oil; i.e. Melrose which is kept in the fridge of health food shops. I believe that the Omega 3 and 6 essential fatty acids are very important for good health.
Overall I feel health well and full of energy for a lady in her 50's as well as no longer suffering from restless legs.
Judy H.
Date: Sunday, March 28, 1999 4:48 AM
Subject: Patient progress in Australia
Thought I'd let you know how I'm progressing here in Adelaide, Australia. Our last correspondence was on 3rd and 5th March 1999, regarding active ingredient of Requip and Mirapex. Since then I have consulted a neurologist who prescribed Parlodel, partly on my request, because left the RLS info in the car at the time of the appointment and so had nothing to refer to, except my memory for drugs I barely know!
The specialist consulted a recent Data Base on CD which confirmed, for her, that clonazepam is the drug of choice for RLS. I could not recall the names Requip and Mirapex at all. I do not know the source of the Data Base, only that it is "Australian produced and drawn from international studies". The doctor seemed to be uneasy about me trotting in with information drawn from the internet, suggesting that it is difficult to discern what's good and what's not.
I felt a bit like the father of Lorenzo in the movie 'Lorenzo's Oil' which is the story of a father of a child with a rare blood disease who fought his own battle in the search for a cure for his son's disorder. A film with many messages for everyone.
I have not yet started the Parlodel as I'm in the process of weaning myself of the clonazepam and in fear of suffering more terrible sleepless nights in the process. Thank you for your support in the past; I just thought you might appreciate an update on where I'm at.
Regards,
Christobel S., Adelaide, Australia.
Parlodel (bromocriptine) is a Parkinson's disease medication which acts like dopamine (just as Permax, Mirapex and Requip). Some centers here in the USA like to use Parlodel and have found that it works well on many RLS sufferers. Other centers have found Parlodel's effects to be more variable and not as consistently helpful as the other dopamine like drugs.
If you want to give your doctor a more "official" piece of RLS information, go to the Restless Legs Syndrome Foundation, Inc and request their RLS pamphlets. You can also subscribe to their newsletter which contains articles about RLS written be well known medical authorities in the field.
Date: Wednesday, March 31, 1999 6:10 AM
Subject: Mirapex
Is there any indication that Mirapex causes weight gain over the long haul?
Thank you,
B. Jenkins (age 60) Comanche, Oklahoma
Medical Reply
Weight gain is not a common side effect with Mirapex. I have not gotten any complaints of this problem from my many patients on Mirapex. However, any medication can cause just about any problem, so it is difficult to say definitively that Mirapex is not responsible for your weight gain (although the odds are that it is not).
Date: Wednesday, March 31, 1999 12:21 PM
Subject: Hi there
I am a 40 year old Canadian male and am just going through for a diagnosis for ADHD (Attention Deficit Hyperactive Disorder). I was doing some research on the internet for ADHD and came across RLS and it said that it could be found in people who were Hyperactive.
Then I though back and realized that I had had this weird feeling in my leg before. When I was in bed I would feel this weird feeling in my left leg and would want to kick out, almost like a nervous twitch. Since it said that this disorder was sometimes found in people who were hyperactive I was wondering if you know if any other ADHD people have experienced this before.
Thanks,
Dave
P.S. I would really appreciate it if someone could respond to this email.
Medical Reply
The ADHD is likely not one disease, but a disorder which can be caused by a number of underlying diseases (which will probably be found in the future but are a mystery as of now). It is strongly suspected that disorders that cause sleep disturbances may possibly be a cause of ADHD due to the increased daytime sleepiness resulting from the decreased amount/quality of sleep.
Chronically sleep deprived children will have trouble concentrating and paying attention in classrooms, and this may result in the wild, hyperactive behavior. If RLS is causing the sleep problem, then the adult will complain of their legs bothering them and preventing sleep onset (therefore, in adults it should be hard to miss this condition).
The associated PLMD (leg jerks at night), may prevent deep, good quality sleep and result in daytime problems. This PLMD is most often not obvious to the patient and can go on for many years without detection. It is therefore, through the sleep disturbance that RLS/PLMD may be linked (misdiagnosed?) as RLS. This link is being explored, but as of now, there is not a lot information available.
Date: Thursday, April 01, 1999 10:39 PM
Subject: RLS
I am 26 years old and have had restless legs for as long as I can remember. it occurs during all the time especially during extended periods of sitting and sleeping. Plane trips are painful and I feel like cutting off my legs.
For about a year now, I have not had a full night of sleep. I usually fall asleep right after getting into bed only to wake up an hour later. when I wake up I have the uncontrollable urge to keep moving my legs. Sometimes even my left arm gets this problem along with my legs. If I manage to fall back to sleep I will wake up within an hour and this continues throughout the night every hour. also when I wake up I am hungry for some reason.
I have tried eating a snack before bed and that doesn't help. I told my doctor about my problems sleeping and he doesn't think that it is the restless legs keeping me awake, he believes that it's the fact that I am hungry and that is what is waking me up and keeping me awake. I know that it is the restless legs that keep me awake.
As I read the symptoms and the letters from others on this site I realize that the condition I have is definitely RLS. My doctor gave me amitriptyline to help me sleep and cimetidine to curb my appetite at night. I tried the drugs only a couple of nights because I am apprehensive about using them (they actually made it worse) .
I also was not happy about the doctor not believing me. What do you know about these medications and is there any relation to waking up hungry and restless legs? I have a good balanced diet and get tons of exercise. I find that I sleep the best between 6 am and on but the rest of the world doesn't operate on these hours.
Do you have any advice for me?
Kevin,
Vancouver, B.C.
Medical Reply
It does indeed sound like you have RLS. A small, but significant percentage of RLS patients do wake up hungry in the middle of the night, but there is no explanation for this. If you wake up with the sensation that makes you want to move your legs and this feeling is similar to when you must sit down for long periods of time (as when you take a long plane trip), then the diagnosis of RLS is virtually assured.
Mirapex, Requip or Permax (the first two are better), the Parkinson's disease drugs are amongst the best drugs for the type of RLS that you are describing. The addition of a bedtime sedative (Xanax or Ambien) may also be helpful, but if this class of medication is used, be sure to take regular drug holidays. For further information on how to use these drugs, check out our RLS Treatment Page .
Amitripyline (Elavil), an antidepressant, can often worsen RLS. RLS tend to get better in the early morning, so many RLS sufferers like to sleep in late in the morning. You are right that this does not fit into the regular everyday shcedule.
It is often difficult to get doctors to take your problem seriously. It may be helpful to print out the information on our web page or bring your doctor one of the pamphlets available from the Restless Legs Syndrome Foundation, Inc. which is an excellent source of information on RLS.
Date: Friday, April 02, 1999 2:31 PM
Subject: Anyone been denied disability because they have RLS???
My insurance company would not pay me benefits for being of work with RLS while I found medication that worked for me. They said it was from my long commute to work that I have this condition and that since I've had it for 8 months that I have learned to live with it.
First of all I was misdiagnosed and given Valium and Buspar which worsened my condition then finally referred to a neurologist. The thing is that I tried to live with it and I became exhausted from not being able to fall sleep. I believe that they are being very inconsiderate of my condition and I will fight them in an appeal!! I am very angry and frustrated because unless you've been through the pain and sleepless nights they have no right to deny anyone any benefits. It is a real physical condition although they don't think so.
I would appreciate any response to let these people know how severe and disabling this condition can be. I have returned to work after four weeks and have been taking Ambien which really isn't helping at this point...
Your comments and support are desired,
BLS
Medical Reply
Ambien is very good for putting RLS patients to sleep. While asleep, the RLS is not a problem, of course. Ambien does not treat RLS in any other way.
Speak to your neurologist about starting on Mirapex which can treat your daytime RLS also without any drowsiness.
RLS is a very real medical condition that should be taken as seriously as other medical problems such as asthma or diabetes. Your neurologists should be able to write you a letter verifying the legitimacy of your RLS condition and the resulting disability. You can also obtain more official looking information about RLS from the Restless Legs Syndrome Foundation, Inc. .
Date: Friday, April 02, 1999 6:52 PM
Subject: my cure for RLS
I would like to share one important finding in the elimination of the restless leg problem which I have had ever since I was a teenager (I am now in my 50's). My restless leg problem has been very severe and has stopped me from sleeping many hours each night, going to the movies etc.
I have however managed to completely cure the condition in the last year and would like to share what I think has brought this about.
I resisted taking any medication and about 10 years ago, began a diet of mostly vegetarian whole foods, eliminating junk and sugar, supplementing with brewers yeast, magnesium, virgin olive oil, flax oil in moderation, gentle walking and yoga as exercise and at least a glass of fresh vegetable juice per day. I did notice a great improvement but still had bouts which were very annoying.
One year ago I read a book "Your Body's Many Cries for Water" and started drinking 8 - 10 glasses of water per day. This seemed to have the most profound effect on my RLS and now I do not get the syndrome at all. Dr. Batma (the author of the book) has cured 1000's of cases of stomach ulcers, asthma and painful degenerative diseases quickly with water alone.
It seems that a lot of us are chronically dehydrated without realizing it. I am wondering if RLS may be partially a neurotoxic condition in the legs. Most strong pain medications are antihistamine like in action. In his research, Dr. Batma found that histamine has a most important function in that it is in charge of water intake and drought management in the body. It is less active when the body is fully hydrated and becomes increasingly active when the body is dehydrated. In short histamine produces pain when an area in the body is suffering from drought.
Pain, discomfort, ill-ease in the legs... for some people the water cure may very well help. However, this does not include soft drinks, coffee, tea or fruit drinks, just water. Please give it a go and keep up at least 1/2 teaspoon of salt (in your food) for each eight 8oz glasses of water.
Contact Judy at niero@pnc.com.au if you want any further advice.
Medical Reply
Water therapy has been recommended for a whole host of problems for hundreds (possibly even thousands) of years. It is however, never been proven scientifically to be effective.
Many therapies may work by the placebo effect (sugar pill), which may even help up to 20% of many illnesses. Unless a double blinded valid medical study is done (and repeated by other investigators) showing that a treatment has a proven benefit, then all we can say is that it has worked in anecdotal cases, but not if it will work better than a placebo treatment in the majority of patients.
RLS is even more difficult to assess, as far as to how effective treatments work, as individuals can be very variable in responding to even accepted treatments. We will post your treatment with Water Therapy, but can not endorse it. Others may want to try it, but do so at there own risk, as with any other unproven therapy.
A further caution with this water therapy is that patients with high blood pressure should generally avoid the consumption of salt. Patients with a history of congestive heart failure (and other related heart diseases) must avoid any salt intake and most definitely avoid more than a very modest intake of water.
Date: Saturday, April 03, 1999 5:30 PM
Subject: help with description
I have known about RLS for several years, but did not realize it was a full blown disorder on its own, just thought it was a side effect of medications (antidepressant and allergy) that I was taking. However, these last couple of months rather than just having it as I go to sleep, it's been waking me up every hour or so.
I'm up in Canada now and had been taking OTC Tylenol with caffeine and codeine to sleep, but had to increase the dosage so high it scared me (also was getting severe rebound headaches from it). Talked my doctor into giving straight codeine, thought it would be easier to withdraw from one drug rather than three. I haven't been able to do it though, take 15 to 45 mg a night. Have been using Kava Kava which actually works better than codeine, but only for an hour or so and if I overdosed on it, my stomach kills me in the morning.
Just began to search the Internet and am going to take the info to my doctor in a few days with an three year old blood test with ferritin levels at 28 ug/l (I believe it's supposed to be over 50 for RLS's). I have two questions I need help with.
My RLS follows all the time patterns, but I notice it in my shoulders and hips more than my calves. I 'wring' my feet for several hours each night, but do not really feel any creepy crawly sensations. What I do feel I describe as a rubber band twisted up so tight that it would snap if I didn't move. The sensations seem to located beneath my shoulders blades (between the 'wings' and the spine) and travel from side to side. My legs either just need to move or I have extreme pain after laying down in my knees and surrounding areas. Both not moving much during the day and strenuous exercising sets the pain off.
Sorry to go on for so long, but I want my doctor to treat me seriously. I had mention the RLS to her, but she hadn't picked up on it and she was really reluctant about me continuing the codeine. Thanks for all the info and effort on your part.
Chris L.R. in Calgary
Medical Reply
The actual feeling of the RLS discomfort can be quite hard to describe and may vary a lot amongst RLS sufferers. The most common description of the creepy-crawly feelings do not occur in everyone. The most common thing that RLS patients have in common, is that the RLS discomfort makes them want to move their legs in order to relieve it. Your description of your symptoms sounds exactly like RLS.
Codeine, and other narcotics, should be taken carefully. Regular drug holidays (and least 2 days off every two weeks) should be followed faithfully. Ferritin levels of less than than 45 ug/l may be a cause of RLS and replacement therapy with supplemental iron should be strongly considered.
You should consider having your doctor prescribe one of the Parkinson's disease medications (Mirapex, Requip, or Permax - not Sinemet), which should significantly help your RLS and markedly reduce your need for codeine.
Date: Sunday, April 04, 1999 9:41 PM
Subject: RLS
I am a clinically diagnosed Narcoleptic and for a couple of years I have been plagued by a periodic "restless" feeling in my quads (thigh muscles). Stretching seems to relieve the feeling. But my real concern is severe cramping in my legs, ankles to hips. These cramps last from 3 to six months.
Eventually, I get aching joints, especially the knees. I wake up several time during the night to do a series of stretches in an attempt to relieve the pain. I recently went to a physician who is attempting to diagnose my cramping problem as Restless Leg Syndrome.
I guess my question is: Does /Can RLS manifest itself by relentless cramping in the legs? I am 50 years old and my blood chemistry levels are all normal. I just hurt and sometimes walk like an "old man" I'd appreciate your feedback.
Medical Reply
It is sometimes difficult to rule out RLS when there is a new painful disorder affecting the legs. The true test to help decide whether the disorder is RLS or something else, is to answer 2 questions.
The first question is: Does the pain/discomfort come only when sitting or lying down (some may have some low level pain even when active, but it gets dramatically worse when sitting or when in bed trying to get to sleep)?
The second question is: When the pain/discomfort occurs in your legs, do you have an irresistible urge to move your legs? Just feeling as if stretching may make your leg pain/cramps better may not satisfy this condition.
If the answer to above 2 questions are affirmative, then you have RLS. If not, then you have some other condition that should be taken care of. The type of pain/discomfort can be very difficult to describe and thus quite variable. Most do not actually complain of cramps, but for some that may be the best description that they can come up with.
Date: Thursday, April 08, 1999 11:10 PM
Subject: RLS
I wrote you a couple of years ago (I think I'm somewhere back on page 4!) and you offered several good suggestions on treating my RLS as well as other complications I had/have. Things have gone well until lately, when everything seems to be worsening.
I currently have the following diagnoses: RLS, PLMD, fibromyalgia, myofacial pain, osteoarthritis in neck and shoulders, and a bulging disk between C5-6. I will likely be having an EMG done in the near future. The treatments I'm undergoing for the fibromyalgia, etc., are trigger point injections, stretching exercises, and massage therapy. The medications I'm taking are Flonase, Claritin, Guaifed (all for "seasonal" allergies that last all year round), Arthrotec (50 mg 2xdaily for the arthritis), Serzone (300 mg daily in divided doses for depression/anxiety), and Ambien (prescribed for 10 mg nightly; often, I take half that dose).
My sleep has gotten much worse lately, as has the RLS. While the Ambien gets me to sleep instantly, it doesn't keep me asleep all night. Generally, I wake multiple times every night and usually my legs are restless once or twice during my early awakenings. Later in the night, I don't feel the RLS so much when I wake. These awakenings don't seem to be related to the amount of Ambien I take.
Due to the sleep problems that go hand-in-hand with fibromyalgia and the alpha-delta sleep anomaly, I never get deep sleep. The RLS and PLMD are, of course, co-conspirators in this problem. I'm trying to determine if I would be better off to add something like a low dose of Elavil at night to deepen Stage 4 sleep, or if I would be better off to add something like one of the newer dopamine agonist meds like Permax or Mirapex. Some of the studies I've read suggest that these can be excellent for RLS. Or, I suppose I could try Ultram which might relieve pain overnight and thus get me to sleep better.
Whichever course I take, I need to improve my deep sleep so I can stand a chance of getting "refreshing" sleep (whatever that is! It's been so long, I'm not sure I know anymore) and sleep that will heal so that I can also start getting some relief from the muscle pain I have.
I'd be very interested in your opinion on what you think might offer me the better sleep.
Thank you so much, again. Your site has been a godsend for all of us and I refer to it often in the fibromyalgia cyber-support group I've joined. Many people with fibromyalgia suffer from RLS and don't even know what it is or that it can be treated, often by meds that could help their fibromyalgia as well, so I always feel compelled to refer them to your treatments page so they can get some accurate information.
I look forward to hearing from you.
Carol E.
Medical Reply
Elavil has a better chance of worsening your RLS then improving your stage 3 and 4 deep sleep. My suggestion is to have your doctor prescribe Mirapex (which is as you noted, excellent for RLS/PLMD). It has a very good chance of improving your RLS/PLMD problem.
Ultram (or the narcotics) should be used only if the Parkinson's disease medications do not help. They help RLS, but not PLMD (unlike the Parkinson's disease drugs).
Date: Thursday, April 08, 1999 11:46 PM
Subject: Poster Child
Help, I just found your web page and now I know I'm not the only one out here with this problem. Let me describe my symptoms and the treatment my doctor has recommended so far.
I am 38 years old and in good physical shape for the most part. Usually in the afternoons I get to a point that I can no longer keep my legs still. Even now, as I write, I feel the need to keep my legs moving. My wife tells me I "trot" while I sit. Bedtime has become a real nightmare for me. I usually have severe problems falling to sleep. Sometimes I actually feel the restlessness in my legs and the need to move; at other times I simply toss and turn for hours.
When I do manage to get to sleep my leg movement usually drives my wife our of our bed. (she and my 6 year old daughter have become very good friends between the hours of 12:00 Midnight and 7:00 AM.) Once I do fall to sleep, I will usually sleep for about 30 minutes and then wake up feeling very "uncomfortable" in my legs and hips. I usually get up and walk around the house for a few minutes and then return to bed.
Sometimes I am able to drop off to sleep for another 30 minutes, only to awaken to the same sensations. At other times I may remain awake for 2-3 hours feeling miserable and wishing I could just cut my legs off and be done with it all. I can't keep them still. Even when I try, I can only hold my legs still for a few moments before I feel that if I don't move them I'm going to burst! Many time my legs, especially my right one will go into spontaneous jerking that can become quite violent. I go through this night after night with no seeming relief.
Usually about 6:00 or 7:00 am, I finally fall to sleep; however, I must be up around 8:00 in order to carry on the days activities. I find myself dragging through the day in perpetual drowsiness; however, at about 8:00 PM the whole cycle starts over again. My doctor's first treatment was Amitriptyline 10 mg, increasing to 30 mg over 15 days. DISASTER!! The treatment had the opposite effect on me, getting worse as the dosage was increased. My seizures got worse and my "sleep" was filled with a nightmarish "between wakefulness and sleep" feeling. that kept me sitting on the edge of the bed in complete misery.
My thrashing around on the bead became violent! A week ago I went back to the doctor and he changed me to Clonazepam 1 mg. Again, the leg movement was not decreased and the sensation of being halfway between sleep and wakefulness increased. Yesterday, I returned to the doctor and he increased my dosage to 2 mg. Last night I had the most hellish night I think I have ever had.
I am a 38 year old, 230 pound, outdoors man, weightlifter who has over the course of his lifetime dislocated knees, broken arms, collarbones and fractured ribs while playing football without shedding a tear. But, last night I sat on the edge of the bed, after I had covered every inch of it in twitching and turning, and cried like a baby. I am about at my wits end. I am getting to the point that I cannot function during the day because I am so fatigued. I feel that at any moment of the day I could fall asleep, but at nighttime, "poof" its gone and I'm back to wrestling with the sheets and punting the pillows across the bedroom.
Any suggestions that you could give me would be greatly appreciated. I'm desperate!!
Daniel L. G.
Medical Reply
Get your doctor to prescribe Mirapex (the other Parkinson's medication may also work, Requip, Permax or Parlodel) for you as soon as possible. Follow the prescribing plan discussed in our RLS Treatment Page. The odds are very good that your RLS problem will be solved in the very near future.
Date: Friday, April 09, 1999 9:20 AM
Subject: Mirapex and insomnia
I have been taking Mirapex (.25 mg) for six months with excellent results. However it has caused severe and debilitating insomnia. I am trying to decide whether to switch to another medication (e.g. Requip) or to supplement the Mirapex with a sedative.
Any suggestions?
Kathy
Medical Reply
We have had several patients complaining of insomnia with Mirapex. Rather than adding another drug to combat the side effects of the initial therapy, it is better to change the offending drug.
A trial of Requip, Permax, then Parlodel (likely in that order) would be good alternatives to try. There is a good chance that one of them will do the same as Mirapex, without the insomnia.
Date: Friday, April 09, 1999 10:24 AM
Subject: Experience with Mirapex
I have had RLS for at least 20 years and I see a neurologist regularly. He rotates me through various medications to keep my symptoms under control. We recently tried Mirapex, which my doctor had never prescribed to any of his patients before. I started at the very lowest dose 0.125 mg once a day before bed.
The Mirapex completely stopped my RLS symptoms. I was sleeping as if I was a normal person. However, within a month I became very anxious all the time. I reduced the Mirapex dose by cutting the pills in half and this reduced the anxiety somewhat. However, it also turned out that my blood pressure which is normally about 110 over 70 had shot up to 150 over 100. I stopped the Mirapex and my blood pressure is gradually dropping, but it is still elevated.
I know that hypotension is listed as a possible side effect of Mirapex so we were very surprised to have this happen. Has anyone else had a similar experience with Mirapex?
Medical Reply
We have used Mirapex extensively and have not seen any reactions similar to yours. But even if a reaction is not listed as common for any drug, people are so different that any reaction is possible. If your blood pressure is still elevated after stopping Mirapex, then it may not be the Mirapex that caused it to increase in the first place.
You may want to try Requip, which is quite similar to Mirapex. Hopefully it will do all the positive things for your RLS without the negative ones.
Date: Sunday, April 11, 1999 9:09 AM Subject: leg pains / RLS and Bowel Movements
For many years I have tried to find a doctor or anybody that can relate or shed a little knowledge on my problem . If any of the following rings a bell with you, please let me hear from you !!!
I had all the classical symptoms of restless legs syndrome for most of my life (I am 64 years old now), but I seem to have moved on to something else now, probably complicated by RLS !
First of all, from all I can read about RLS, a person does not experience what you would call "pain". It seems to be described many other ways , but what I have is "pain", no doubt about it ! Here's the the hard to understand part. If I go to the bathroom and have a successful bowel movement the pain will go away immediately ! This is true 100% of the time, this can not be a coincidence !!!
The discouraging part is that every doctor that I have talked to tells me that I am wrong and their is no connection between the two events!! I don't care what any doctor says, I know what I feel and "they" are wrong!!!
This is not some sort of a perverse joke!! Please help me, if you can shed any light on this subject!!
Marvin W.
Ocala, Florida
Medical Reply
Although we have not heard of RLS sufferers having their symptoms improved by having a bowel movement, many RLS sufferers link their problem to digestive functions. We have heard of RLS getting better or worse (usually worse) with eating certain foods, or after eating in general. The digestive process does release many hormones into the blood stream, and these certainly can affect the nervous system and by extension, RLS.
We will post your letter and see if others have had any similar experiences.
Date: Sunday, April 11, 1999 2:33 AM
Subject: CONNECTION TO OTHER SYNDROMES
Hello, I would like to know if there is any known connection with RLS and fibromyalgia syndrome? I have both and would like any information you could give me on this subject as I'm trying to research this on my own.
Also what drugs are used effectively for treatment as best to you findings. I sure could use some good advice. This drives you crazy.
Thank you so much,
Patricia H.
Medical Reply
There has been an association of this disorder with RLS and PLMD, in that they occur more frequently in patients with Fibrositis (Sleep Related Myoclonus in Rheumatic Pain Modulation Disorder [Fibrositic Syndrome], Moldofsky et al, Journal of Rheumatology 1986; 13:614-617). Patients with Fibrositis who have leg cramps, also have a higher incidence of RLS and PLMD. Rheumatoid Arthritis is a separate disorder, but that too has been linked to increased RLS (Restless Legs Syndrome and leg cramps in Fibromyalgia Syndrome: A controlled study, Muhammad, B Yunus, Aldag, Jean C., BMJ 1996;312:1339).
There is as yet no special treatment for RLS/PLMD associated with the Fibrositic Syndrome. Sedative night time medications (Klonopin) have been tried with variable success.
The link between these two disorders is not well understood, except for the possible thought that the decreased sleep from RLS/PLMD might contribute to causing fibromyalgia.
Check out the letter from Carol E. above written on April 8, 1999 for more recent discussion of this problem.
Date: Sunday, April 11, 1999 10:04 PM
Subject: RE:my reaction to doctor's reaction
Back again (previous post April 3). You can't possibly know how grateful I am for both your response and this website. Actually, since it seems that so many here have been through much the same, you've probably got an idea.
By the way, I'm 40, female with two kids, have food, dust mite and other allergies that might or might not be triggering my depression and mood swings, migraines, fatigue, and numerous aches and pains all of which I've almost got under control except for the fatigue and RLS which is getting worse. Enough said. I've been working my way through the patient letters, but would like some more personal advice as my appointment with my doctor was not as successful as hoped.
She was aware of RLS as a disorder, but did not explain why she hadn't attempted to get more information from me when I've mentioned it in the past and as I didn't want to alienate her, I didn't probe. By the end of the appointment, it was obvious that her awareness was limited and likely to stay that way. I had printed up the RLS Foundation Medical Bulletin and your treatment page. She looked at neither of them nor did she take them for future reference.
She was impressed on my personal treatment plan-a full page of suggested treatment, self and doctor's (I wanted her to realize just how important this was to me). She thought it would be great if I did two or three of them--I'm already doing over half of about 12 categories. Obviously she hasn't experienced the joys of RLS. She really downplayed any possibility that my low ferritin levels might be contributing to the problem, but ordered several blood tests (results not in yet, you will probably be hearing from me again).
Anyway, after suggesting Prozac which I had to forcibly remind her was what set off extraordinarily bad episodes, she put me to go on Rivotril. After being thoroughly intimidated by her less than enthusiastic response to my research and suggestions, I accepted it after having no success with Ambien ('experimental drug') and Ultram ('not available in Canada') which appeared to me to have less side effects. She also suggested quinine which is still available OTC up here, but does not want me to try it until after I've given Rivotril a chance. I was under the impression quinine worked better on leg cramps which I don't have and as I already have bad tinnitus, I am skeptical of results and rather ticked off as well.
After four days on the Rivotril, I can say it's had both good and bad effects. Once I'm out, I'm out-for seven to eight hours. Unfortunately, since it's aggravating the initial bedtime symptoms, this means I'm sleeping until noon. My husband is understanding but it's an awkward way to live and I'm dopey the rest of the day with a monster headache for most of it. I can't drive or even remember clearly much of what happens at times.
I'm still having to take the Kava Kava and once off the codeine, it got so bad. I am very concerned even if I do adapt to the drug about being able to take drug holidays. I build tolerances and have rebounds to medications very easy even Tylenol. I've attempted to get completely off medications several times but my RLS has always driven me back on. I can deal with pain and depression, but not 'jitters'.
Now for the questions. How long do I give myself to adapt to the Rivotril? She wants me to do at least 6 weeks before trying the quinine or anything else. Should I force myself not to take the Kava Kava and codeine and just suffer to give the Rivotril an 'honest chance' as quickly as possible? I have gone without sleep before,for days, but not willingly.
Also, with her past reactions, if my ferritin levels are still only low normal and she refuses supplemental treatment, can I treat this on my own? She seemed very concerned about iron overload.
Again, thanks for being here. It gives me a great sense of credibility that has often been missing in my life when it comes to my health. It makes everything easier to deal with.
Cris L. R. from Calgary.
Medical Reply
Your complaints about getting medical care for your RLS are unfortunately too common. Most doctors have had minimal if any training about RLS (and then it is most often totally out of date). You do not necessarily need a doctor who is an expert in RLS, but you do need one who is willing to learn who to treat it. No matter what health care system that you are in, you should have the choice to find a doctor who will be able to treat your condition, whether diabetes, cancer or RLS.
Just think about it, if your had diabetes, would you let a doctor who had little or no training and was unwilling to learn about diabetes treat you? You may want to think about finding a physician with more training in RLS (sleep specialist or neurologist), or simply a general doctor who is willing to read the available literature (there is lot of it now) and treat you properly.
Forget about quinine. It is great for leg cramps, but virtually useless for RLS (a few RLS sufferers may get relief, but not enough to put this on the list of drugs to try).
Doctors who are less experienced with RLS, will often use clonazepam (Klonopin, Rivortil) for RLS. Clonazepam has a very long half life and thus will make most users drowsy in the daytime. Ambien (not experimental in the USA) works well, but Xanax (alprazolam), which is available cheaply everywhere, works quite well for sleep onset and has a short enough half life to be gone in the morning (start with the 0.25 mg dose and increase only if necessary). My advice is to discuss with your doctor changing to Xanax and stopping the Rivotril (clonazepam).
With the amount of literature available showing that low ferritin levels (below 45) may be associated with RLS, and treating it would correct the problem, it seems strange that any physician who was familiar with this would not treat you with iron. You should not do this on your own, but have a physician monitor your iron and ferritin levels.
Lastly, I would like to repeat the advice that I gave you on April 3, 1999. The Parkinson's disease class of medications are usually very effective for RLS. With one of Mirapex, Requip, Permax or Pergolide, you should be able to get excellent control of your RLS and not even need any other treatments. If the iron therapy does not help you, then this class of drugs should probably be your first choice of treatment.
Date: Monday, April 12, 1999 4:24 AM
Subject: Side Effects of Permax
I am 44 year old female and was diagnosed with RLS after my father died of congestive heart failure with acute RLS. I have been struggling with this for 9 years. My doctor first prescribed Sinemet. Very good results, but medication would not last through the night. I would often wake up in the middle of the night again with symptoms(not being able to lie still and having to stand on my feet to get relief).
My doctor then changed my to Permax which does great through the night. I sometimes have a feeling of dizziness and faintness, but would rather deal with that than no sleep. The most severe side effect (I assume) is very painful legs upon awakening in the am. I remember my dad complaining about his legs hurting. It is very frightening as I am young, with small children in the house.
Any suggestions to a very frightened mother?
Medical Reply
As far as the side effects of Permax, you would likely do as well or better with Mirapex (or Requip), which generally has less side effects. It might also do better eliminating the morning leg pain.
Date: Tuesday, April 13, 1999 7:08 PM
Re: Ferritin levels and RLS
Thank you for this web site. Without you guys, I would still be trying to figure out what the heck was wrong with me. I have now been diagnosed with PLMD and I am trying to avoid medications. I had my serum ferritin level taken and it was 90 mcg/L. I know that this isn't that low but it is in the low end of the normal range.
My question to you is, "Do you think I should try iron replacement therapy or look elsewhere for relief?"
Thank you,
Angela in Redondo Beach.
Medical Reply
It is generally been found that RLS/PLMD will often get better with iron therapy when the ferritin level is below 45 mcg/L. There have been some documented improvements with iron therapy when ferritin levels are between 45-100 mcg/L. Most RLS/PLMD sufferers, however, do not improve with supplemental iron when their pretreatment ferritin levels are at the higher range of 45-90 mcg/L.
My advice is to consider other therapy for your PLMD problem.
Date: Wednesday, April 14, 1999 6:39 AM
Subject: Mirapex
I have been on Mirapex since 9/98 and I have gained 40 pounds since then. I told my neurologist about the weight gain and he said the Mirapex should not cause an increased appetite. He suggested that I begin a swimming and exercise program (which I did but that doesn't control my eating urges).
I feel that it is the Mirapex. I get uncontrollable urges to eat after I have taken my medication which is around 7 PM (3 tablets at 0,125 mg per tablet). Often I still wake up right after I have gone to bed with the urge to eat. I also take Neurontin, 300 Mg, 2 tablets two times a day and occasionally I take 1mg of Ambien before going to bed.
I awake with hunger whether I take Ambien or not. The Mirapex has been the most effective medication for me for my RLS but I'm getting very depressed about my weight and eating disorder.
Do you have any suggestions?
Medical Reply
I have not yet heard of increased appetite with Mirapex, in fact nausea and decreased appetite is a more likely side effect. That however, does not mean that in your case the Mirapex is not the culprit responsible for your weight gain.
My suggestion would be to replace Mirapex with Requip (which is a very similar drug and should work well, but may have a different side effect profile). Hopefully, this will take care of your RLS without causing increased appetite.
Date: Wednesday, April 14, 1999 2:08 PM
Subject: RLS & Shingles
I have written before & appreciated your answers very much. I am interested in knowing if there is any connection in RLS & shingles. For about a week now, I have had all the symptoms of shingles, itching, burning, pain & a very red rash. I have had them before so I know how they feel.
There is only one problem: I have the symptoms on both legs. I saw my neurologist yesterday & he said the rash looks exactly like shingles, but no one had ever had them on both sides of the body. Is there any connection to this with my RLS?
Thanks for your help.
Frances
Medical Reply
No, there is no connection or link between shingles and RLS. Shingles occurs in a nerve root that supplies only half the body, so it is on only one side of the body. It would be extremely rare to have 2 outbreaks or shingles on opposite sides of the body at the same time.
Date: Friday, April 16, 1999 8:37 PM
Subject: RLS and blood calcium level
I have had RLS for many years. I have gone to sleep clinics and tried Sinemet but it made me tight as a banjo string. I therefore gave it up. I been living RLS for years.
A few months ago my family doctor found that my blood calcium level was too high. Tests showed that one of my parathyroid glands was enlarged. It was surgically removed and my calcium levels normalized AND NO RLS. My restless legs have been gone for several months and is it wonderful.
Please don't go and have a parathyroid removed, but it might be worth while to get a calcium check next time you have a physical. My doctor can't explain why but he says just be happy about it.
Joe
Medical Reply
Iron and magnesium are two minerals that have been associated with RLS. There have been sporadic reports of calcium disorders being associated with RLS, but that is extremely uncommon.
It does show that it is worth having a full lab work up periodically for RLS, and that it should include an extensive chemistry panel (chem 18).
Date: Sunday, April 18, 1999 6:43 PM
Subject: Restless Legs Relief, somewhat
I've had restless legs syndrome since I was a little girl. It was obvious to me that something was really wrong when I had to climb out of bed and stretch my legs over and over, this happening at 3am, 4am, etc. My parents had no idea what to do. They'd never heard of anything like it.
As I've gotten older, I am 32, it has gotten progressively worse. I started taking Klonopin. It cause a worsening of the symptoms. I took Sinemet. It worked but then cause my symptoms to begin earlier and earlier in the day, sometimes 5am or 6am.
Now I am taking Permax. Restless Legs is relentless; however, Permax has finally done what the other meds did not. I am getting a relatively good night's sleep. I also take Vicodin, Darvocet or Tylenol with Codeine to help me sleep. Each works well with the Permax.
It helps to know that there are others out there experiencing the same thing. At one time, I thought it was all in my head.
Shari P.
Medical Reply
Your experience with RLS and medication for treatment is very common. Sinemet often causes augmentation (symptoms occurring earlier) and Klonopin is not always helpful if the RLS is quite severe.
Permax (or the even better and newer Mirapex and Requip) works much better than Sinemet and has provided relief for many RLS sufferers.
There is no problem about adding the narcotics (Darvocet, Vicodin, or codeine), but try to take regular drug holidays of at least 2 days off the narcotic drugs every 2 weeks to avoid tolerance.
A Reply from Shari P.
Date: Sunday, April 18, 1999 8:38 PM
Subject: Pregnancy and RLS
I've been thinking about pregnancy, and I'm wondering if you have heard if pregnant women can take Permax without fear of birth defects. this is a real concern for me.If I couldn't take Permax, I'd be a basket case.
My restless legs aren't manageable without it. If you don't know, do you know who might?? My doctor prescribes the medicines for me, but he has very little information in regards to my condition.
Thanks,
Shari P.
Medical Reply
Unfortunately, Permax is not approved for pregnancy. The narcotics are alright, although any medication should be given carefully and under supervision during pregnancy.
The other problem is that RLS usually gets much worse during pregnancy. Some doctors will also prescribe sedative medications during pregnancy.
Date: Tuesday, April 20, 1999 10:34 AM
My husband and I have been married for 11 years. He must have RLS, which I've never heard of until today. Every night we fight, because, just as I start falling asleep, his leg muscle spasm violently, like he was dreaming he's falling off of a cliff and jerks awake. I, of course, kick him to the couch because I have to wake up at 5:30 a.m. everyday for work.
Both his mother and father were alcoholics, and he is a recovered alcoholic. He has extreme leg cramps at times to where he cries and rolls around on the ground in pain. His grandmother has the same problem, and its always at night when they are asleep. My husband thinks that its because he rides his mountain bike 200 miles per week. He's quite an athletic rider.
Kim B.
Medical Reply
The leg jerks sound like PLMD (Periodic Leg Movement Disorder), which is common in RLS patients. If the leg cramps are pains/discomfort in his legs that come at rest (not only in bed) and make him want to move his legs (and get relief with this movement), then he likely has RLS.
RLS is quite hereditary, generally with many family members complaining of the same problem. There are lots of good medications which can help RLS.
A Reply from Kim B.
Date: Wednesday, April 21, 1999 4:25 AM
Yes, I believe that my husband has PLMS because he has severe leg cramps during the day as well. He doesn't have the crawling skin feeling, but he will get a Niacin burning feeling in his big toe, which will twitch uncontrollably.
He is 34 years old and is very athletic. His thoughts on this PLMS problem is with the broken down sugars stored as energy in the leg muscles, which become out of control when these muscles are relaxed. Now that I know that its a disorder that he can't help, I'll be more patient and sympathetic.
He does not want to take drugs, but these Ayrubedic herbs that I've been reading about on this site sounds like a good start. There's a man that works here who sells herbs and vitamins on the Internet. I'll see if he has them.
Kim B.
Medical Reply
If your husband does well with herbs or other over the counter remedies, then of course he should not consider prescription medication. If he does not get relief from other therapies, then there is the option of prescription treatments.
The cause of RLS is still unknown, so your husband's thoughts on this are as good as anyone else's.
Date: Thursday, April 22, 1999 8:52 PM
Subject: I'm not alone in this leg thing
I am Cindy from Washington state. In 1989 this leg thing started I was pregnant at the time so I thought it was the pregnancy. I do believe the pregnancy exasperated the condition. I went 14 days with two minutes of sleep. No one believes me except for my husband. this syndrome drives our loved ones crazy too! My poor husband will wake up in the middle of the night to rub my legs for me or just to keep me company.
I have tried acupuncture, several meds, such as Ambien, which I must have been allergic to because I became very confused on it. Now, after being so fed up with these doctors in my small community , the only thing I'm taking is trazadone an antidepressant and all my home remedies, i.e.: hot baths, several on a bad night leg stretches in bed and bicycles in bed.
It just isn't good enough though. I get so much anxiety about two hours before bed. The trazadone has a sleep side affect but I usually wake up about 2 hours after I get to sleep. If I do get any sleep, it is poor and fragmented. My sister has just started the leg jerks. My father has these huge leg jerks that actually made a huge hole in his mattress!!
I am hopeful that I will get some results from a sleep center in Olympia. I hope the doctors up there know what they are doing. I am very grateful to have found this website. At least I know there are many many other suffers out there looking for answers also.
Peace to you and get a hope you get a good nights sleep!
Cindy B.
Medical Reply
Speak to your doctors about prescribing Mirapex (or Requip or Permax) for your RLS. It has an excellent chance of treating your RLS and giving you some real good quality sleep.
Date: Monday, April 26, 1999 10:50 PM
Subject: restless legs
After reading through several of the letters, I recognized many similarities. I suffer off and on with this syndrome. It was gone for quite awhile but now it is back. I have attributed it to hormone fluctuations, lack of B vitamins, coffee etc. I am trying to figure it out.
One thing I know is that it seems to get worse with exercise. I dance often and do a lot of fatiguing bar work and my legs just won't settle down at night. Often eating Grape Nuts at 2 in the morning will help, but on bad nights it might not.
I do know that I have cut out most of the fats in my diet and thought that this might be related. My Dad also has suffered from this but not as much recently. When I get really tired of restless sleep I will take temazepam (Restoril) but not too often because it is addictive.
Thank you for this support group,
Linda
Medical Reply
Restoril, like the other sedative medications, will help RLS. It is a good idea to not to use sedatives regularly to avoid addiction/tolerance.
There are other RLS medications, such as the Parkinson's disease drugs, which do not have problems with addiction and can be used on a daily basis, if needed.
Date: Monday, April 26, 1999 11:42 PM
Subject: Only cure I know...
I go to sleep every night and within 1 1/2 hours I am up with aching restless legs. I am on Paxil and Xanax and do not indulge in caffeine, to no avail. When I wake up, I run a extremely hot bath (to the point I can barely stand) and soak my legs for 5 minutes. Then its off to dream land.
A shower nozzle aimed at the legs, with same temperature works just as well, but takes longer. I have found that if I do this just before bedtime... like 5 minutes before I climb into bed, I get relief and get a whole night's sleep.
Just letting you know what works for me... thanks for having info on the subject...
Medical Reply
Thanks for your description of your personal treatment for RLS. It is interesting that some RLS sufferers get benefit from hot water, while others benefit from cold water.
Date: Tuesday, April 27, 1999 3:37 PM
Subject: Re: RLS
I am so delighted to reach your Website and to know that I am not alone suffering from RLS. I am a 69 years old woman. When I first had my leg problem I was in my early 20's. At that time I had a lot of tonsillitis recurrences. Every time I got over each attack I had leg problem. Finally, I had tonsillectomy and my health grew stronger. Subsequently, I had no leg problem for 10 or 15 years until the time when there was civil war in the country where I lived. Under extreme mental stress, worries, fear and distress, my leg problem returned. I sought for acupuncture treatment which gave me temporary relief of about a week's duration. That means I had to go back for treatment every week.
Later, I got out of the country and came to the Western world. Again for about 15 years I had no leg problem until about 12 years ago this horrible ailment came back to me, probably due to the loss of one of my beloved sisters. I felt there were worms or snakes creeping or boring inside my legs causing me to jerk, stretch, twitch or bend my legs.
Sometimes I had to kneel on my knees pressing hard on my knee tendons in hope to stop this unpleasant feeling. Sometimes I rolled on the floor to stretch my legs in hope to be able to sleep a while on the floor. I explained to my family doctor who believed me but at a loss to help me.
Finally, he referred me to a neurologist who examined me for some time, then asked me, "Have you ever heard of 'Restless Leg Syndrome'? I said, "This term described my agony precisely and exactly." He then prescribed me Klonopin, at first 1 mg, then up to 2 mg. I had had it for about three years. It gradually loses its effect. I continued to have RLS with sometime 1 or 2 hours sleep, or no sleep at all.
Finally, I had to resolve to retirement. I also moved to a city with more favorable climate. Again, I searched for neurological help. This time I was given Sinemet CR 25/100, then crept up to CR 50/200 which does help me better, but causes my blood pressure going up to 170. So, I am taking blood pressure medication as well .
Later, this neurologist moved out of town and I went to another one who gave me Neurontin 100 mg on top of Klonopin and Sinemet. Now, I am on all three of these. Yes, neurologist told me this ailment is not life threatening. But,I answered him silently in my heart "This agony sometimes would drive me to find means to end my life."
If everything goes well, these three medications work together fine. I am kind of drugged to sleep. However,if I catch a simple cold or a viral infection, then nothing seems to help at all. I will be left alone to fight with this horrible RLS, tossing and turning in bed, soaking my pillow with tears, or might as well swallowing my tears, clenching my teeth, gripping my fists to bear it all through the sleepless nights.
My father had PLMS; all four survived sisters of mine have RLS. None of them need medication; I have the worst condition. It seems hereditary factor plays a role. Would mental distress and worries also be responsible? How about cold germs and virus? They seem to be barring the effect of medications.
If I get 5 to 6 hours sleep at night, I consider myself very fortunate. Short afternoon nap is something I would really like to have, but the legs always play me up until I say to them: "OK, I forfeit; I am not going to sleep; I will walk and walk, not even sit nor stand." If by chance I get 7 hours sleep I will celebrate. I do not dare to think about tomorrow, next year or years to come. I only go one day at a time and rejoice in it. Thank you for listening.
I would appreciate very much for whatever advice.
Phoebe L.
Medical Reply
Genetics do play a large role in RLS, with half or more of RLS sufferers having a family history of RLS. Mental stress is common trigger of RLS. Viral (or other) infections are not usually associated with RLS.
I do have a few suggestions for you to discuss with your physician. Mirapex would likely work better than Sinemet, and has less side effects and problems with treatment, especially at higher doses. You are likely tolerant to Klonopin. It might be helpful to slowly wean off this (with the aid of your physician). Then, after being off it for a week or two, start either Xanax or Ambien, but take regular drug holidays of two days off the sedative medication every two weeks.
The addition of a narcotic or Ultram for occasional bad nights would very likely take care of any RLS note relieved by the above medications.
Date: Tuesday, April 27, 1999 4:06 PM
Subject: RLS
I am a 44 year old female and I have been suffering from the symptoms of RLS as long as I can remember (at least from the time I was about 9 years old). My parents just thought it was growing pains and I went through my teenage years just learning how to live with it. I would get up in the middle of the night and walk around, or rub my legs, or just raise my legs, or shake them, etc. etc.
When I was about 18, I was at my doctor for a routine checkup and I asked him about the feelings in my legs that I had throughout my life. He told me it was a calcium deficiency. I took large amounts of calcium for quite a while. It helped at first, but like everything else, the pain came back.
I continued on through the years asking doctors about these feelings and was prescribed different medications that would work for a short time but not really solve the problem. I became a night person, going to bed very late and not getting much sleep and always being tired. I could take naps during the day, but I couldn't seem to sleep at night. Throughout the years, the problem has just gotten worse with almost no real relief. In the meantime, I have gotten married and had 3 children. My husband and I don't sleep together because he cannot sleep with me moving around and I cannot go to bed without moving around constantly. Therefore, I have slept on the couch most of our married years (we have been married 11 years).
About 5 years ago I was reading the Reader's Digest about sleep disorders and I came across an article where a lady described her symptoms and I just cried because it was exactly what I have been going through all my life. The article described it as Restless Legs Syndrome. I took the article to my doctor and just like all my doctors, he just brushed it off and gave me a medication for sleep. I kept bugging him until I found something that worked. He prescribed Klonopin and Depakote. It worked. I took that (sometimes changing the Depakote to different medications) for many years. It worked sometimes and sometimes it didn't. The doctor said he didn't know what else to give me so I continued to 'live with it'. I still had a hard time sleeping, even if my legs weren't bothering me. I have definitely become an insomniac.
About a year and a half ago, my husband was 'surfing the internet' and he found out that there was a support group in the the Los Angeles area and I went to the next meeting (it is about 2 hrs drive from my home). I have been to about 3 meetings since then. It is wonderful. I have learned a lot of things but I still have a lot of trouble communicating with my doctor. I now have a different doctor and he seems to be working with me but not really trying hard to learn more about this disorder. I have never been 'officially' diagnosed with RLS because I don't think the doctor understands what it really is. I have given him the book that the Los Angeles Group has but out but I couldn't tell you if he has even read it.
I learned at the support group that Klonopin is not recommend for RLS patients because of the long half-life of the drug. I figured that is why I am always tired and get depressed a lot. The drug drags on to the next day. I have gone through many years of depression and listlessness. I talked to my doctor about this and said I did not want to take Klonopin any more. He said "what do you suggest I do?" I told him about Ambien because I had learned about it in support group and the internet site. He prescribed 10 mg of Ambien, at bedtime, for me.
Now I will describe to you what I have been going through in the last month. I stopped the Klonopin, cold turkey, and started taking the Ambien and found that I went to sleep within 1 1/2 hrs and didn't remember a thing until the next morning. That was wonderful!! But my legs are still hurting before I go to sleep and when I wake up and sometimes during the day when I am at rest.
It is still very uncomfortable (for lack of another word) for me and I still don't go to sleep until very late. I also have noticed that I feel very light-headed a lot. That scares me. It is mostly 'at rest' (like, right now) and at night but I sometimes feel it at other times, too. I cut the Ambien pill and took about 2/3 of it and it still works for me but I still feel the light-headedness. My husband read in a medical book that lightheadedness should be reported to a doctor and that you should not just stop taking Ambien. I have read a lot of mail from lots of people on the Internet about Ambien. There is good and there is bad but it seemed to me that this is something that would fit my needs.
What should I do next? It seems to me that my doctor doesn't know what to do and he will take my advice. I think I should take something for the pain(restlessness, etc) along with something to help me sleep. Is the lightheadedness something serious? I would appreciate any suggestions and help that you can give me. I hope that this letter wasn't too long and drawn out but I wanted to describe my history of RLS the best I could.
Thank you,
Patrice W.
Medical Reply
It is difficult to assess the cause of the lightheaded feeling. It is possible that it may be from the Ambien, but it is also likely that the stress of the chronic RLS discomfort may be causing it. You might try a change to Xanax for a few nights and see if the sensation resolves. Remember to take regular drug holidays.
The sedative helps you sleep, but does not affect the RLS discomfort/pain. For this, Mirapex (or other Parkinson's disease medications such as Requip or Permax) would likely resolve your problem. This medication works very well for the RLS pain/discomfort. You may find that you do not even need the bedtime sedative as often once the RLS pain/discomfort is fixed.
A Reply from Patrice W.
Date: Tuesday, April 27, 1999 8:37 PM Subject: Ambien
Do I have to take drug holidays for Ambien?
Patrice W.
Medical Reply
The makers of Ambien (Searle) claim that there is no addiction or tolerance problems with Ambien and so far there are no reports of this occurring in the medical literature. Despite this, I still recommend that regular drug holidays be taken with any sedative medication.
I do have some patients using Ambien for Xanax drug holidays, and doing well, but only time will tell if this strategy is correct.
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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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