If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Date: Mon, 12 Jan 1998 08:54:59 -0800
Subject: Restless Leg Syndrome
As with many others, it was great to find that my problem was not unique. I have had RLS since I was a child (I'm now 58) and used to find that long periods of running worked best. In recent years I've gotten relief from taking dietary supplement pills containing magnesium and zinc. The most effective relief, however, comes from "half-squats". I put my feet together. brace myself to avoid falling then bend my legs to a "half-squat" position. I hold that position as long as I can until my muscles are totally fatigued. Just before I collapse, I get back in bed and usually go right to sleep.
Date: Tue, 13 Jan 1998 00:12:06 EST
Subject: I have found something that has worked for me.
My doctor prescribed, Levo-Dromoran, 3mg, 1and a half before bed time, and 1 mg of clonazepam, or Klonopin. I have no idea what the Levo-Dromoran is or how it works but it does. I have had NO side effects at all from the Levo- Dromoran.. I feel very lucky because everything else I have tried failed miserably.
I was wanting to know, how potent is the Levo-Dromoran compared to say, Vicodin 5mg, or even some other opiates out there. I want to thank you for this website and please, keep on keeping on.
With love and luck,
James, Oregon City, OR
Levo-Dromoran (levorphanol tartrate) is a powerful synthetic narcotic. It has the potency of morphine whether given in the oral or by injection. Therefor, it is considerably stronger than Vicodin 5 mg (roughly 3-4 times stronger, but this is a very individual effect). It comes in 2 mg tablets, so I assume that your dose is really 3 mg (1 1/2 tablets of the 2 mg tablet).
Another Reply from James
Date: Tue, 13 Jan 1998 20:51:56 EST
Subject: Re: I have found something that has worked for me.
Thank you for the information on Levo-dromoran. I called my doc today to thank him for finally giving me something that works. I can't believe that after 7 different doctors and thousands of dollars, I finally found something that works, and a doctor that isn't afraid to help me by prescribing such a potent drug.
I only wish that I could take something for my daytime RLS. I work around heavy machinery so I can't take any mind or mood altering chemicals. Do you know of anything I can take during the day that will kill the pain but not effect me physically? I am very careful about what goes into my body and when. I only take the 1and a half tabs of the Levo-dromoran before I go to bed. I have been on a drug holiday from the Klonopin for 4 days now. I usually stay off of it for at least a week. I wish that I didn't need the Klonopin because it makes me really tired in the morning. I have tried Ambien and a few others in it's place, but they didn't work. Oh well, at least I can sleep for more than 3 hrs a day. Thank you very much for the info, and God bless.
James, from the city of roses.
Consider trying the Parkinson's disease medications such as Permax. They will relieve the RLS symptoms including the "RLS pain" and not cause drowsiness during the day.
It is a good thing that you are taking long drug holidays from the Klonopin, as it has a very long half life.
Date: Tue, 13 Jan 1998 04:14:21 EST
Subject: Re: RLS
Thanks, but I know I have RLS cause I have read tons on it and all the post's from people sound like it is me talking. I just think that I have a very severe case of it, and that is why it goes in my arms also. I also have read that one of the things that helps RLS is Ultram. I have been on that for 2 years now and as long as I take it, the RLS is under control. If I run out or forget to bring it with me, that's when I get really bad and end up in the emergency room to get a shot.
I am usually ok during the day unless I am traveling in the car for a distance, I can't handle that at all. If I drive it is better cause I have a stick and it keeps my legs moving enough. There are times when it flares up really bad and then I may go for awhile and it isn't to bad. I also have really bad muscle jerks while falling asleep and during the night. Those seem to be getting worse and the medicine doesn't help that at all.
From all the things that I have read, I seem to have a very severe case. I don't know if it is because I also have the Fibromyalgia, so it is doubly hard on me or what. I also have migraines really bad and have to take medicine for that to keep down the pain and vomiting. I think it may be from the Ultram, cause I never had them before I started taking the Ultram, but I can't handle the RLS with out it. It feels like my muscles are being stretched so far apart, and I walk, and shake, and hit my legs, take hot baths, etc... to also deal with it. I have gone through a lot in my life but nothing can compare to the pain I feel from this.
You should check with your doctor about going on one of the Parkinson's disease medications (such as Permax). It would likely help your RLS and make your life much better.
Date: Tue, 13 Jan 1998 22:44:16 -0600
RLS is a chronic condition for me. I have had it since my early 20's. Now at 42, it just about drives me insane some nights. Most nights I'm tossing, turning, kicking, & up walking to try to stop the sensation of worms running up & down my legs. My husband sleeps on the sofa half the time so he CAN SLEEP.
I take Sinemet twice a day but sometimes it works sometimes not! Also after taking it for prolonged periods of time it causes even harder twitches.I've tried everything possible but nothing works after a while.
I work in a hospital & was wondering if any one has ever tried using a "flo tron machine" for RLS. It is a material wrap for the calves attached by air hose to a small motor that inflates &deflates the wrap at timed intervals for proper blood circulation of the legs. Any one who has surgery of any kind gets one until they are able to get up on their own& ambulate. I wonder if it could help because it would put pressure on the calves on & off all night.
Thanks for the site first time any one else knows how frustrating & exhausting RLS
RLS is certainly a frustrating condition, both due to its unremitting nature and due to the lack of understanding from friends, family and especially medical professionals. As you can see from our web site, there are lots of treatments for RLS/PLMD (your description indicates that you have both).
Your problem sounds too severe for Sinemet, and other Parkinson's disease medications such as Permax or Mirapex would likely work much better. You already are getting rebound/augmentation problems as you have noted that the twitches get worse with Sinemet (this does not happen with Permax and Mirapex). Xanax or Ambien would likely help you sleep much better.
I do not know of anyone who has tried using a "flo tron machine". These types of treatments sometimes help a few RLS sufferers, but most do not benefit from this type of therapy.
Date: Thu, 15 Jan 1998 11:19:21 -0800
Subject: Information please
I have a 6 year old who is up during the night with what my doctor says is growing pains. She complains of leg pain and never stops moving all night, sometimes worse than others, sometimes bad for a week and then nothing for a month. This has been going on since she was two but even as an infant, has been a terrible sleeper. She is not worse for wear and wakes up cheery with plenty of energy every morning.
The only other medical problem she has is a "duplex kidney" a malformation she was born with. Her right kidney functions at 60% while her left is perfect. For the first two years of her life she was on antibiotics to avoid infection. Besides this, she is a bright, normal child. A neighbor and I were talking and I was telling her of another bad night I had with my daughter and she said she herself suffers from this problem which inspired me to write to you. I would welcome your opinion.
Colleen (for Katie)
It is very difficult to diagnose a 6 year old with RLS. Many RLS sufferers can trace back their RLS symptoms to early childhood and remember their symptoms being ignored or called growing pains. The leg pain could be RLS. The moving all night is only significant if it is arm or leg movement only.
The problem is that young children can not describe their symptoms as well as adults (although many adults with RLS have difficulty describing their symptoms also) and other problems can be misconstrued as RLS. The kidney problem should have nothing to do with RLS. Only active kidney dialysis patients or kidney failure patients have this problem.
Your daughter seems to be not the worse for wear whatever her problem is, so we would not want to treat her medication. In general, we do not like to treat children with medication for RLS/PLMD.
Date: Thu, 15 Jan 1998 17:25:05 -0800
Subject: Your RLS Web Site
Just found you today. I had a bad night of RLS last night (no sleep) and thought I'd check the internet for help. I've had Restless Leg Syndrome since I was 16 years old. I'm now 59. It comes and goes in cycles but is never gone for more than a few days. I do find that if I get startled by a loud noise when I'm dozing off at night or even if I start thinking about the onset of RLS it suddenly appears. It jumps from one leg to the other, never in both at the same time. I also get it in my arms which is even a worse sensation.
My first onset at 16 occurred while I was pregnant with my first child. Most of the time it occurs when I'm in bed or sitting for long periods. It drives me nuts on an airplane flight or in a movie theatre. I've never been treated by a doctor for it as I feel silly bringing it up. Most people look at you strangely and although I've known a lot of people in my life, I don't know anyone else who has RLS (or talks about it).
I've tried B6 supplements, eating bananas for potassium, drinking more milk etc. etc. Nothing seems to work. Thanks for the web site and information. It is nice to know I'm not alone. I will bring it up to my physician next time I go as it seems to be getting worse with age. Hope to hear from someone out there. I live in Boulder City, Nevada and there is no support group listed. Would love to see one start up or I can possibly start one myself.
Bye for now. Thank you,
You are right in that RLS usually (but not always) gets worse with age. Please do take our Treatment Page to your doctor as with proper treatment you should get significant relief.
We do encourage you to start your own support group. It can be very rewarding.
Date: Sat, 17 Jan 1998 01:31:41 EST
Subject: The Cause of RLS/PLMD
I have written before about my medication problems for my RLS/PLMD, but now I would like to take this time to promote my theory of what causes the disease state. I am sitting here writing with the RLS acting up. To me it feels like there is a build-up of electrically charged ions like in a thunderstorm (I'm a Geographer) and the build up gets so bad that the pain forces me to move my legs and this movement causes temporary relief from the electrical build-up ( the lightning bolt is the climax of the build-up of of positive and negative ions in the air.) The lightning bolt is the electromagnetic result of the build-up and once the lightning has occurred, the air returns back to normal levels of negative and positive ions.
I have seen experiments on dead frogs that when they place electrical charges on the frogs nerves, it will make the frog leg jump. Maybe the leg movement is the equivalent of the lightning bolt. The climax of the build-up of an electrical disturbance in the brain.
I also have a niece that has severe epilepsy and I know from various literature that a leading theory of what causes epilepsy in some patients is an electrical disturbance in part of the brain.
If my theory is true that is it caused by electrical disturbances in the brain ( a abnormal build-up of electrons), that would correlate to why epilepsy or ant-seizure medications work for RLS/PLMD patients.
The problem then is what causes the electrical build up? Is it a permanent brain malfunction? If so, then what triggers of the episodes, like what triggers off some epileptic patients to go into a seizure?
What do you think?
Since we do not know the cause of RLS, your theory is as good as any other ones (and we have heard many) that have been presented. Anti-seizure medication does work in selected RLS cases, but then so does a lot of other classes of medications that have nothing to do with seizure/epilepsy control. So, far there is no unifying theory that explains why the various disparate treatments help some but not all RLS sufferers.
Date: Sat, 17 Jan 1998 21:35:26
EST Subject: RLS
Don't know if they will ever come up with a cause for RLS...it's probably several different things, considering that such a variety of medications and actions seem to help so many people with such a variety of symptoms. I've had RLS for at least 20 years. It started sporadically, then increased as I got older. Others in my family have it. I certainly wouldn't wish it on anyone. It has kept me from traveling and staying at other people's homes because I had to be up and down all night. I do travel now but it's miserable. Plane flights are horrible.
I've tried quinine to no avail. All vitamins, herbs, no caffeine, cold, hot, massage, wrapping, tranquilizers, muscle relaxants, antidepressants, baths, no sugar, no artificial sweeteners.....all to no avail. Tried Sinemet, then doubled the dose...nothing. Then I started Klonopin, which worked very well, though not every night...for a while. The longer you take it, the less it seems to work.
My only absolute answer are the opioids. Of course, no one wanted to give them to me so I had to scavenge from friends and save medication given to me for other painful conditions. As I get down to 2 or 3 pills, I begin to panic...what will I do when they're gone? I try desperately to do without them...walking around and sitting at the computer for a while, which occasionally works.
I'm SOOOOO tired! I can't keep staying up all night long and falling asleep in the car...I lay across my kitchen counter and fall asleep sometimes...then I can't straighten up when I awaken. At times, I experience these feelings in my arms and upper body...also have terrible thigh cramps and in the front of my calf.
My daughter found this site for me and I plan to see Dr. Earley at Johns Hopkins Hospital, where they are doing research on this. Hopefully, I will be placed on medication that will enable me to begin sleeping like a normal human being, and getting up feeling rested and able to accomplish some- thing. My heart goes out to each and every one of you...I will keep you in my thoughts and prayers as I tearfully wander through the lonely nights....... January 17, 1998
You should do well with proper treatment. The opioids do work very well for many RLS sufferers. Klonopin worked only for a while for you, as you likely did not take adequate drug holidays from the drug.
Another Reply from Connie
Date: Thu, 22 Jan 1998 20:58:17 EST
I'm so sorry to bother you again, but I've been wondering about these drug holidays. Especially these people who are telling you that they're taking large doses of opioids and Klonopin or the likes also. Wouldn't they have bad symptoms if they just stop instead of easing off?
When I stop my Klonopin I always cut it in half first for at least a week. I talked to one lady on here who had terrible panic attacks from sudden withdrawal from Klonopin, and I think perhaps that's was I had this past fall when I blamed it on stress. I'm not talking here about taking a break after 2 weeks...some people have taken medications for much longer and don't realize there's danger in suddenly stopping. At least, I think so.......???
I hope you'll address this problem more thoroughly.
Thanks again!...Don't know what I'd do without you!
You are partly right in saying that suddenly stopping opioids or benzodiazepines (Klonopin) can cause withdrawal problems. This, however, is only a consideration when patients have become addicted to the medication. At that point slow tapering is indicated as severe withdrawal symptoms (including seizures) can occur with stopping those drugs suddenly.
By instituting drug holidays after the first few weeks of therapy, addiction and tolerance are avoided and there is no concern about suddenly stopping opioids and benzodiazepines. It takes months or longer to develop tolerance or addiction, but this should always be watched for and avoided.
Date: Mon, 19 Jan 1998 16:45:59 -0600
Subject: RLS and B Vitamins
I have been suffering with Restless Legs Syndrome for at least 25 years (I am now 45). Over the past several years, the symptoms have gotten worse. I now have restlessness in both my legs and shoulders. I have complained to my doctors about the RLS symptoms many times but they have never recommended a treatment.
A little over a year ago, I began taking Redux for weight loss. I had a very bad spell with RLS that kept me up all night for a week! My whole body was restless during this spell. My doctor suggested that Redux was making it worse. I have since stopped taking this medication. I am now taking Prozac (20 mg.) for PMS and have not had any worsening symptoms of RLS.
I heard that B vitamins sometimes relieve the symptoms. I began taking multiple vitamins along with a B-50 complex almost a year ago. I find that when I am taking them regularly my symptoms disappear. When I forget to take them for several days in a row, I begin to suffer again.
Redux and other diet medications have been known to make RLS worse. Prozac may help or hinder RLS, but most find no real change. A small percentage of RLS seem to get help from B complex vitamins, but the reason for this is not understood.
Subject: Thanks for your indirect help!!!
Date: Wed, 21 Jan 1998 15:58:33 -0500
I thought I would drop you a note about my experiences with RLS. If this is an inappropriate note, I apologize in advance. I have been living with RLS for the past 15-20 years (I am currently 32 years old). I started to be interested in seeking medical help late spring 1997. I found the RLS foundation and became a member. I read their newsletters and started an internet search about the RLS condition, treatment, etc.
I purchased "Sleep Thief" and also I stumbled upon your web site and was just amazed at the amount of information. Your web site really helped me in deciding the seek medical help for my condition. I especially like the treatment pages and e-mail pages (from other RLS victims). They helped me more than I can ever explain to you. Thank you. I am now a "normal" sleeping human being. Before I started my RLS medical management, I would be lucky to sleep four hours a night, and very broken sleep it usually was. I was working (surviving) on sugar, caffeine, and adrenaline. My body was used to this routine, however. Now, I need sleep just like a normal person.
My body started to adjust to "needing" this sleep within a few weeks. I now get 6.5 - 8 hours of sleep a night and have even sleep 12 hours straight on occasions. If I get only four hours of sleep, I am kinda cranky and slow, just like a normal person. I have actually almost forgotten how it is to have the RLS condition because my management works so very well. I currently take one Sinemet CR 50/200 about two hours before I anticipate I will be getting ready for bed. For me, 8:00 PM works very well. My wife and I usually watch TV or do other quite things by around 10:00 PM. I take the Sinemet CR for 4-5 days in a row. Then, the other 2-3 days, I take Vicodin 5/500 about 30 minutes before bedtime. Thus far, the Sinemet and Vicodin have an active duration well longer than was is stated on the bottles.
The first week or so took a little adjustment, but I have been almost RLS free for 5 months, now. In fact, I took my first RLS free plane ride this past November and oh was it great to be able to just sit and relax for the entire 2.5 hour flight. My doctor and I decided to switch between Sinemet CR and Vicodin to help prevent my body from building up a tolerance. Also, Sinemet CR, for me, only prevents other RLS symptoms from occurring. If I have some RLS symptoms when I take the Sinemet CR or I forget and take it a little late or have a really bad night, I can take the Vicodin also. The Vicodin will eliminate the symptoms and the Sinemet CR will prevent them from coming back.
I am very happy with the current management and my doctor and I have a very good understand and open relationship. I am thankful that I have no side affects, that I have noticed, and both the Sinemet CR and Vicodin do not make me sleepy. Thus, I fall asleep on my own instead of been drugged to sleep.
I would be very happy to talk with other RLS individuals. If this e-mail could be of some use to you, please feel free to distribute it.
I am in the Lansing, MI are and can be contacted at firstname.lastname@example.org
You are more than welcome for any direct or indirect help that we may have given you. We have gotten many responses similar to yours that our web site has educated other RLS sufferers and galvanized them to seek help, even after many years of suffering silently.
Your letter is very appropriate and we will post it on our page. Your treatment sound very appropriate and I am glad that it is working so well for you. Generally, no drug holiday is needed from the Parkinson's disease medications and they can be taken everyday. There is, however, no problem with not taking Sinemet a few days per week.
Date: Thu, 22 Jan 1998 17:57:05 -0500
Subject: Restless Leg Syndrome
To Whom It May Concern:
I have immediate relief with a Homeopathic remedy called Zincum.Met. It is very inexpensive and it works. I order it from Washington Homeopathic Products, Inc. at 1-800-336-1695. There is no need to take drugs. This is a natural remedy.
C. A. L.
Thanks for you letter. We will post it on our web page.
Most natural remedies seem to help only a few RLS sufferers, but not the majority. However, selected RLS sufferers may get some benefit from any of the remedies that work on the various patients who write in.
Date: Sat, 24 Jan 1998 01:05:34 EST
Subject: PLMS (Periodic Limb Movement of Sleep)
I have been reading all the symptoms and treatments that everyone has tried. It is all very interesting, and I appreciate all the input too. Seems so many people are really suffering. I know I am. I have had jerking legs at bedtime since 1990 after a head injury. No one ever said the two were related, but, it started two weeks after the injury. I had become so emotional that I was sent by my neurologist to a psychiatrist. I just knew I was crazy. No one would listen to me. I even took a VCR, and taped myself sleeping. My doctor said, Well, it just looks like you are restless. Ya right!!!!.
I finally got a sleep test 2 years after the accident, and when the doctor told me that my legs jerked 213 times, causing 213 arousals or awakenings, and that I got through NO sleep stages, I was in shock. At least I finally got a diagnosis. Now he listens to me, and finally believes me. He had another neurologist in his office who specialized in sleep disorders. So, I saw that doctor too. But then he moved away. Sleep Disorder doctors are few and far between, as are support groups.
The frustration with PLMS seems to be equal to all the RLS people that I have read about. Does anyone have any information about PLMS? It is always thrown in with RLS, and I believe a lot of the same medications are used. But PLMS is not mentioned often. My symptoms are jerking of either one or both legs, at the ankle mostly. All the sheets are off my side of bed in the morning. When it wakes me up, I just get all angry about it all. It does get hard to deal with.
I have tried many medications, including Ambien. Ambien really had me stumbling around and getting up in night and not remembering anything about it. I have been taking Klonopin for a long time. My neurologist just added Permax yesterday. Took the first pill last night. He told me some people when taking Permax feels like they are going to die. I thought Oh My God!! But after only one pill I only woke up with a headache, and Advil did help with that. I understand why some people do give up on medications, because of the horrible side effects. But, which is worse? Who can choose?
Anyone one with any of the symptoms they have been reading about, either RLS, or PLMS, needs to have a sleep study done, to get a correct diagnosis. They two disorders are similar but different. I have tried many of the above mentioned medications with not much relief. My doctor told me that the Klonopin was supposed to stop the jerking, and after years of taking it I didn't know that. I thought it was to just help me stay and bed and sleep through most of it.
I always put on socks when I go to bed because when they get cold, the jerks increase. I have read about the hot baths, and am going to try that also. I am at the point of trying just about anything. Natures Sunshine has a site on herbs here online. I have some of them. The Melatonin along with the Klonopin have given me the best results, if there is to be any. I wish it would just go away, and I could go back to sleeping like I used to.
Sleep deprivation causes anyone to be perceived as emotional, so don't let the doctors tell you that you are emotional. I told mine "of course I am emotional, I can't sleep". That was when he finally agreed to the sleep test. It was like pulling teeth though, and it should not be like that. Since then I just feel like a guinea pig. Well, sorry this is so long, and good luck to all of you who are suffering and know that we all understand it.
PLMD and RLS are two different but related disorders. 95% (or more) of RLS sufferers have PLMD, but only about a third of PLMD patients develop RLS. You seem to be in the pure PLMD category. Your head injury likely was the cause of your PLMD, but the mechanism of this is not understood (or for PLMD in general).
Benzodiazepines (Klonopin) generally do not stop the leg jerking of PLMD, but they prevent the sleep arousals from the leg jerks. Klonopin is working well for you, but remember to take drug holidays, or you will be needing higher and higher doses. Xanax is also a good choice in the benzodiazepine group (and has less potential for daytime drowsiness).
You are on the right track. The Parkinson's disease medications (Permax) are a good choice to improve the PLMD. The side effects can be avoided by slowly increasing the dose as needed (see our web Treatment Page for more on this).
Good luck and let us know how you do.
Date: Fri, 23 Jan 1998 14:00:39 EST
Subject: Taking Drug Holidays
I read through all of "Page 8" of the Patient Letters on RLS Symptoms and Remedies and noted that on a number on responses by the person making the medical reply that with certain drugs, a drug holiday was recommended. In one of the latter letters, on Page 8, the medical reply said a drug holiday was recommended if the medication was addictive or one for which tolerance is likely.
I have also read many times, that with addictive medications, such as hydrocodone, that even if the user becomes addicted, (which I suspect I probably am) that there really is no major resulting problem. Such persons, in general, do not abuse the use of the medication. If so, why is a drug holiday recommended? Is it because responses are generalized, and the prescribing physician would need to know the patient before drawing such conclusions?
I am taking a combination of Sinemet 50/200cr; Sinemet 25/100; hydrocodone 500mg (4-5 per day); Depakote; and nortriptyline. If I even miss the correct timing of taking hydrocodone at bedtime, my body will experience both RLS and PLMD symptoms big time. I have been on the same regimen (determined together with a neurologist) for over three years and feel that I have what were big time problems under control. I get adequate sleep, although do experience drowsiness at times.
The concern about addiction and tolerance are very real and important. From your description, you are not addicted or tolerant to your medication yet. When addicted, you would need the medication when off it for a few hours, for reasons other than relief of your RLS. With the addiction, tolerance of the medication generally occurs, in which the previous effective doses of the medication are no longer effective, and the person needs increasingly higher doses to get the same relief.
Some people develop addiction and tolerance quickly, and others do not develop it ever. There is likely a genetic mechanism which controls this, but as yet this is poorly understood. You are lucky, in that you have not developed tolerance to your hydrocodone, and do not appear addicted (although you will likely always have your need for your current level of medication to control your RLS).
Taking drug holidays may not be necessary for you, but it really helps maintain the potency of the drugs for others, and avoids addiction and tolerance. The advice is generalized, but should be followed by all new patients starting addictive drugs.
Date: Sat, 24 Jan 1998 17:40:23 -0700
My wife has had severe RLS for three and a half years. She was diagnosed with it after a sleep study and the the people at the sleep clinic said it was the worst case of RLS they had ever seen.
We have tried all kinds of therapies, including, but not in any particular order: Sinemet, Ambien, lorazepem, folic acid, hydrocodone, acupuncture, Klonopin, acupuncture, homeopathic remedies such as valerian root, and St. Johns's Wort, hot baths, cold baths, massages, and numerous other treatments all to no avail with the exception of the hydrocodone.
The hydrocodone (Vicodin,Loratab) has raised more problems than it has solved. Her tolerance is very high and she has become addicted to it more than once. As I write this letter she is going through detox at a rehab center for the 3rd time in 1 year!
When she has no medication the RLS is so bad it goes up into her arms and drives her out of her mind. She has seriously considered suicide on more than one occasion and I know she is not alone. I've learned more about RLS on this web-site than I have from any of her doctors. I'm finding myself having to educate THEM.
We told her neurologist what we've learned about Ultram. He said he would look into it and when he got back to me he said that it too is proving to be a habit forming drug, contrary to what they first believed. He now wants to try a combination treatment of clonidine (is this the same as Klonopin?), Ambien and Permax or pergolide. Can you tell me if you think this treatment will have any success after all she's been through? Her RLS is ruining our lives, literally controlling it and we can't keep up with the bills. I'm so stressed out that I only sleep a few hours at night but I'm the lucky one. My wife doesn't sleep at all.
I anxiously await your reply.
It is always difficult to give specific advice to individual RLS sufferers who write in to us. This is even more so with a case as difficult as your wife's case.
The Ultram may be habit forming like the narcotics, but if used properly, especially with drug holidays, addiction and tolerance can be easily avoided.
Clonidine (Catapres) is a blood pressure medication very distinct from Klonopin (clonazepam) which is a benzodiazepine type of sedative.
Clonidine works only in a minority of RLS cases. Ambien and Permax are good choices, but make sure the Permax is instituted properly (see our Treatment Page). For difficult cases like your wife's case, it often takes a lot of work with a sleep specialist who really understands how to treat RLS.
Date: Tue, 27 Jan 1998 20:24:00 -0800
My mother has had RLS for 50 plus years. She had surgery three weeks ago for "ovarian-like" cancer and has had one treatment of chemotherapy (one week ago). She has been in the hospital for a total of 22 days. There have been some complications (colon, kidneys), and she remains on IVs. She is unable to keep any food or oral medication down. The doctor says this is normal after chemotherapy.
She is in severe leg pain, but is unable to take any medication orally, and the doctor does not want to give her anything through injections. She is not sleeping more than an hour at a time and not healing as one would hope. We are concerned that the leg pains will continue and/or worsen and interfere with her body's healing process. We are concerned that this syndrome is life threatening.
She has tried many drugs over the years, including some in the hospital when she could "keep things down", but with little success. My family is taking turns staying with her so that we can wheel her IV stand alongside her as she walks the hospital floors all night long. Any ideas for this type of situation?
It is not clear why her doctors do not want to give her anything by injection. That is really no different than getting medications by the intravenous route. Most narcotic pain medication can be given intramuscularly or intravenously, and they of course control RLS very well. The sedatives can also be given IV or IM, but do not tend to last very long by this route.
The leg pains/RLS should not interfere in a major way with your mother's healing process, although adequate sleep does help one mend a little faster.
Date: Wed, 28 Jan 1998 23:59:11 +0000
Subject: RLS patient write in
It's 12 midnight and as usual the RLS started about 45 minutes after I went to bed. I go to bed with trepidation, wondering if it will start. It usually does. I read all of the write-ins tonight, first time I've looked up RLS on the Internet although my sister and I have had it for most of our lives.
Someone mentioned St John's Wort, so I took a couple of them. I seem to be taking a drug no one else has mentioned...Lorazapam. I used to take one pill at night and it would work after a couple of hours. Lately I've had to take 3 and still had to wait until 5:00 am before the RLS stopped.
Someone mentioned walking around like a zombie during the day because of so many nights without good sleep. I can relate. Nobody talked about cycles with RLS. Both my sister and I can go for months and months without symptoms. Nobody else mentioned this.
I have not tried any of the common drugs listed above. The reason I don't like Lorazapam is that it makes me very "droggy" the next day, however it is a very strong sleeping pill. Once I'm out on this drug I'm out all night with no wake-ups usually.
I intend to try that mysterious herb that Candice is taking. Thanks a million to those who put this Web-site together. I am very thankful.
Steve from Yorba Linda
Many RLS sufferers have cycles of increased and decreased symptoms, but there is no explanation. Lorazepam (Ativan) is a commonly used tranquilizer that is not marketed for sleep unlike its other cousin drugs in the benzodiazepine family. It is not listed on our web site under the sedative section as it has a fairly long half life (stays in the body for 8-12+ hours) and may result in daytime sleepiness (which may explain why you are "droggy" the next day. Xanax or Ambien are better choices to avoid the daytime sleepiness.
It also sounds as if you are starting to become tolerant (and possibly addicted) to the Ativan. You are taking 3 pills (you do not specify the strength of the Ativan), which is likely a fairly high dose already. You should strongly consider taking regular drug holidays to avoid getting tolerant and addicted to these drugs.
There are also many other drugs in other classes that you can add (even at small doses) to your sedative medication.
Date: Thu, 29 Jan 1998 14:43:24 EST
The founder of the Dreyfus Group, [Jack?] Dreyfus, ran a full page ad today in the Washington Post today about the wonders of phenytoin, described as an anticonvulsant by the FDA. Has this drug ever been used to treat PLMD?
Please let me know if it has been tried by any of your members. Thank you.
Phenytoin (Dilantin) is an anticonvulsant drug that has been used successfully for many other conditions including heart problems. Many of the anticonvulsant (anti-seizure) medications (Neurontin, Tegretol, Depakote, Mysoline) are used with some success in RLS/PLMD. Dilantin has not yet been reported (to my knowledge) in a study on RLS/PLMD, but I have heard sporadic reports of patients benefiting from this medication.
At this point I would not recommend trying phenytoin for RLS/PLMD.
Date: Thu, 29 Jan 1998 12:23:57 -0400
Subject: Questions about Pergolide (Permax)
I've been taking Pergolide for about 2 weeks for PLMD. So far, the Pergolide has been working much better for me than the Bromocriptine that I took previously. Now I'd like to ask you nice folks a few more questions about the Pergolide.
(1) I've been taking the Pergolide at bedtime. I fall right to sleep, which I like, but I'm usually sluggish in the morning for several hours, which I could do without. (I realize that this morning time sluggishness may simply be my "natural" morningtime behavior.) My question: Do some PLMD patients take the Pergolide earlier in the evening--say, 2 hours before bedtime--to avoid the morning carryover?
(2) I started the Pergolide at 0.15 mg once daily. I've since bumped up the dose to 0.25 mg once daily with no side effects. (My physician is OK with this.) But I still feel the rubber-legged tiredness which tells me that I'm not on top of the PLMD. I know that most RLS patients take between 0.50 and 1.00 mg per day. My question: Do you think it likely that I'm still tired simply because I'm not yet taking enough? After all, the Pergolide worked beautifully for about six days at 0.20 mg once daily.
I know these questions probably sound elementary to the extent that I could figure them out for myself, but I'd feel encouraged to know that I was moving in the right direction. (Years and years of PLMD have taught me that there's a tiredness beyond all tiredness, a stupefying tiredness beyond hope.)
Your questions are good ones, and may not be completely answerable at this point. Permax (pergolide) generally does not cause sluggishness as a side effect. Most RLS/PLMD sufferers find that Permax is a good medication for daytime symptoms, as it does not usually cause daytime sleepiness. The drug may last up to 10 - 12 hours, so if there are side effects, they could last that long.
It is difficult to answer your question about if you should increase the Permax at bedtime to help alleviate your daytime tiredness. Permax works on PLMD to decrease the leg jerking which may cause arousals. These arousals destroy the quality of sleep and make it not refreshing. The only way to tell if you need more Permax for nighttime leg jerking and arousals, would be to have a sleep study to see if arousal from PLMD are still occurring while on Permax. This of course, is impractical, and we do indeed use the improved daytime alertness as an indication that the medication is working.
Another choice (that can be added to Permax) is a sedative such as Xanax or Ambien. The sedatives to not eliminate the leg jerks, but rather prevent the arousals from the PLMD. If the right medication and dose is chosen, there should be no daytime sleepiness left by wake up time.
A Reply from Mike
Date: Fri, 30 Jan 1998 06:10:22 -0400
Subject: Re: Questions about Pergolide (Permax)
Thank you for the information; it's very helpful to me.
But about the dose of Permax I'm taking--0.25 mg once daily--that doesn't sound low? I'm especially curious about this one point. The Permax is helping me, just not enough, and I'm trying to get some sense of what the problem is. Possibly, I'm not taking enough of the drug. Or, possibly, it's not the best drug for me.
When I read in the Southern California Comprehensive Review of Medications that the typical dose of Permax was 0.50 to 1.00 mg, I wondered if maybe I just wasn't yet taking enough of it. So if you have any information about the dose level, I'd sure like to hear it.
Too high or low a dose with respect to Permax is relative. Many patients with mild RLS problems may need only one or two of the 0.05 tablets per day and do well. There are lots of patients at the upper end of therapy requiring up to 1.5 mg per day.
The average (which in the case is roughly the most common doses we see for a large variety of RLS sufferers) is between 3 to 10 of the 0.05 tablets per day. You are thus somewhere in the midrange of commonly used Permax doses.
Whether you need more Permax or not should be decided between you and your doctor. It is sometimes better (but this should be decided on an individual basis) to add additional RLS medications rather than increasing the dose of a single medication.
Another Reply from Mike
Date: Sat, 31 Jan 1998 06:10:59 -0400 Subject:
Re: Questions about Pergolide (Permax)
Thank you. The detailed info on Permax is very helpful. Please don't worry that I'm "self-medicating." What I'm looking for are simply the facts, and nobody knows the facts like you folks. (I think my own physician may appreciate the info, too, as I'm only her 3rd PLMD patient. She's never prescribed Permax before, either.)
Knowing that I'm comfortably in the midrange of typical PLMD patients taking Permax encourages me to give the drug a little more time, rather than increasing the dose just now. And, yes, I'm thinking about the possibility of adding a sedative to help the Permax.
Again, thank you. Just having the facts at hand gives me a much better overview of the situation--which can be very messy--and that's very reassuring.
Date: Fri, 30 Jan 1998 06:22:04 EST
I found your site because I was looking for some answers to this problem. I was diagnosed last spring. I accompanied my husband to a neurologist for a sleep disorder. I had not slept much the night before because of my legs and could not sit still in the office. The doctor asked me a few questions and recommended that I come back to see him regarding this.
At first I felt relief using the Sinemet, but now I am afraid. I am taking enough Sinemet a day that I have minor tremors in my hands and I still am not sleeping at night. The medication does not seem to last long and I wake up often. Before I took these drugs I had the same fit full sleep and only started taking Sinemet to get a full night's sleep. However, what has happened is that I now suffer all day long with my legs and I get only 3-4 hours sleep at a time,
I am going back to the doctor soon. I need more sleep. I also wondered about the enzyme they discussed on television and if it would help me,
One of a long line of Night Walkers (this was my grandmother's, my mother's and my aunt's term for what afflicts the women in my family after menopause).
Let your neurologist know about the problems that you are having. He should be able to adjust/add medication to relieve your RLS/PLMD symptoms. Sinemet can become a problem at higher doses (you do not say what dose you are taking).
It is interesting that your family has used "Night Walker" as their pet name for RLS, as that is the name of the RLS Foundation's newsletter.
A Reply from Marie (Night Walker)
Date: Sat, 31 Jan 1998 12:33:47 EST
Subject: Re: RLS
Thanks for replying so fast. When I first described what was happening at night to me to my Grandmother, she said we all went through it. My aunts and uncles, as well as my mother, were there and we all had a great laugh about the fact that none of the women in my family has had a good night sleep in years. I told my aunts and mother about this diagnosis of RLS, but they feel that it is psychological, not physical and refuse to see a doctor.
I have scheduled an appointment with my doctor. I am very concerned about the side effects of Sinemet. I was looking for alternatives that I can talk with him about. I was wondering about the enzyme Q-10. I heard that it can help relieve symptoms of RLS and at times eradicate the symptoms all together.
Any ideas? I am heading now to check it out on the net.
We know nothing about the "enzyme Q-10". Like many things you read about that are reported by individuals to help RLS, but have not been confirmed by medical doctors, the chances of this Q-10 working on you is very slim.
There are lots of good prescription medications available that have a much higher success rate in helping RLS, so I would not recommend trying the over the counter products that are pushed by the various mail order drug companies which usually claims to cure almost anything).
Date: Sun, 1 Feb 1998 13:51:13 EST
I have a friend that I correspond with in a chat group that has been wrapping his leg in an Ace bandage, rather tightly, to relieve his RLS. He said that in the morning the toes on that foot are considerably colder than on the other one.
I can't help but think that this can't be a good thing for him to do. Can you give me any medical reasons as to why he shouldn't do this, or do you think it's all right?
Thanks for your time...
Using bandages or Ace wraps for RLS is not uncommon. It does seem to afford a small measure of relief for some RLS sufferers, but the reason for this is unknown.
There does not appear to be any significant medical reason not to do this.
Date: Mon, 2 Feb 1998 12:40:04 -0500 Subject: restless leg syndrome
I have just found your website and want to say Thank You! I've had RLS all my life, but spent many years calling it " the twitches". It does get worse with age (52) and it does come and go.
I have the horrible crawling sensations and the electric current. The crawling, tingling sensation happens even while watching TV, reading, movies, or riding in a car. The electric current is worse and usually happens after I go to bed. It begins near my left hip and builds until it runs down my leg, causing the calf muscles or nerves to twitch and my foot to jerk. I cannot control the twitching. They must move!!
Sometimes I am awakened from sleep with my arms involved and a strange feeling in my head. On these nights, I am up until 5 or 6:00 am, when it just goes away.
When I was younger, cold medications, Actifed, Excedrin PM,etc put me to sleep but now they worsen the RLS. Valium and similar drugs will let me sleep for about an hour, and then I'm up the rest of the night, worse than ever. I've tried aspirin, Tylenol, Lortab, and Darvocet, Naprosyn but for me they only work if taken at the first sign of RLS. Sometimes taking a heating pad to bed, and placing around my legs will let me fall asleep.
I also suffer from insomnia. Last night I tried Melatonin for the first time and did sleep without RLS, but it is too soon to know if it really works. Has anyone tried it? Thank you for "listening".
Thanks for your description of your RLS problems. Many RLS sufferers share your complaints.
Melatonin does help many people with insomnia sleep. It is a hormone that is produced in the brain when bright light is turned off at night. There are companies that produce special bright lights (has to be of the right wave length to simulate bright sunlight) that can be used at home in the evening to help promote Melatonin production in our own brains, thus promoting sleep. Taking Melatonin pills may or may not promote sleep in different individuals. If it does help insomnia and put you to sleep, then it may help the RLS/PLMD by keeping you asleep. Some RLS patients have tried Melatonin, with variable and mostly limited success.
You have not yet tried the Parkinson's disease medications, which could be helpful in your case.
Subject: Rls and Pregnancy
Date: Tue, 3 Feb 1998 20:21:03 -0600
My wife complained to me for the first time today that she had trouble sleeping last night, because she kept feeling like she had to move her legs. I remembered hearing about such a condition from the newspaper or some other media. She is soon to be 35 years old and is in her 32nd week of pregnancy. She doesn't remember ever having this problem in the past, although she says that her mother and grandmother (on her mothers side) frequently complained of similar problems.
I am wondering whether their has been any documented correlation to RLS and pregnancy, and if so, whether it could be a temporary condition associated with the pregnancy. Thanks for any information you might be able to share.
RLS is very strongly associated with pregnancy. At least 50% of women with RLS will notice significant worsening of their symptoms with pregnancy. At least 10% of woman will have their first RLS experience with pregnancy. Most of these will have the RLS disappear at the end of their pregnancy. That is the good news.
Many of these new RLS in pregnancy patients will experience RLS again later in their lives (usually in their fifties or later) - that is the possible bad news. This is also quite likely to occur later in life to her, as RLS is familial (in 50% of cases), and with her family history of this disorder, she is certainly genetically predisposed to get it at some time in her life.
There is more information on this topic on our RLS Treatment Page, please check there.
Date: Thu, 5 Feb 1998 15:40:06 -0500
My RLS/PLMD is now 24 and 7 years old. I've been taking Sinemet CR 50/200 from the start (early 1997). Began with 2 per night and now take 1 every 4 hours or so and the RLS/PLMD is still coming through. Have tried Permax and some others I can't remember and my system can't handle.
Although I'm not up walking the floor, I can't get any restful sleep. I am tired, crabby, and unhappy every day and getting sick of masking all with a happy, upbeat false front. My husband is emphatically against taking anti-depressant medication. I have also noticed that my general health is rapidly declining. I am constantly getting colds and flu that later develop into upper respiratory infections and sinus infections. I missed work from December 16 to January 12 (work for wonderful company that values employees and have two superiors who understand about RLS/PLMD since they have firsthand knowledge of how it jerks parts of my body around and ultimately pulls me out of my seat); now developing symptoms again. I have an appointment with my neurologist (Dr. L. specializes in sleep disorders) on Monday, February 9. Does anyone out there have information I can take with me?
Another problem with the medicines (and their lingering foggy-headed feelings) is my job. I coordinate seminars and it's necessary for me to get up at 3:30 each morning. Unfortunately, I don't go home until 4:30 p.m. or later. In between, I'm moving at what seems to be 200 mph and I've got to be able to think straight and react quickly. No chance for me to slip off to the sick room and catch a 15-minute nap. By the time I get home, I feel like I could go straight to bed, but home life has its demands (make no mistake, I love those demands).
I have also started to periodically experience what feels like small electrical shocks in my system. They seem to originate in the stomach area right below the ribcage and spread outward. I also have some that affect the head area. Has anyone ever noticed anything similar to this?
If there is anything else you can think of that might further my cause with Dr. L., please send.
Debra L. H
Seeing a neurologist/sleep specialist is an excellent idea. I will not not presume to second guess your visit with your specialist, but it sounds as if you would do well with a short acting bedtime sedative, such as Ambien or Xanax.
Check out our RLS/PLMD Treatment Page for more information.
I am not suggesting anti-depressants, but as it is your body and health at stake, why does your husband's emphatic refusal for you to take these medications make it impossible for you to use these (or any other drug)? Even if he had a medical degree (which I am sure he does not have), the choice of medication should be between you and your physician. The uneducated, unfounded, and most often irrational fears about drugs of friends and family should not influence any patient to take or not to take medications.
Date: Sat, 07 Feb 1998 06:26:20 -0800
In a previous communication, I neglected to mention that my RLS is helped greatly by 100 mg. of IMITREX immediately before bedtime. It does not totally obliterate the symptoms, but at least 50% of the time it allows me to sleep somewhat. The problem with IMITREX is that there is no therapeutic dosage for use with RLS, and many neurologists do not endorse taking IMITREX on a daily basis. I know that there is hope in Southern California for this malady, and I intend to find a doctor that is well versed in this problem.
Check out our homepage and click the map of support groups in your area in the RLS Foundation section.
Subject: RLS sufferer letter
Date: Sat, 7 Feb 1998 17:34:41 -0500
I am 53 and have had RLS at least since my since my 20's. For most of the time until last year, it woke my husband, but not me. Last year it started waking me every hour. I would be awake for at least a half an hour before I returned to sleep. I tried - Vitamins C, B complex, calcium, magnesium, hot baths, exercise before sleep, jogging until I was exhausted, no exercise, yoga, stretching, eliminating caffeine, sugar, Nutrisweet, colas in aluminum cans but nothing really helped.
I was determined to lick this thing without drugs. I volunteered to participate in a Johns Hopkins RLS drug study under Drs. Allen and Early. I have now been taking Permax and getting good sleep. It produced immediate vomiting until I got to a low enough dose for me. I have now been taking Permax for 6 months and am starting to wake a couple of times a night again. In addition, my arms muscles are now beginning to ache. I also have been taking 325 mg of ferrous sulfate with 2000 mg of Vitamin C three times a day. The vitamin C helps the absorption of the iron.
The Drs. at Johns Hopkins theory is that patients may have normal levels of iron, but low levels of ferritin, which is the component of iron that passes the blood-brain barrier and affects the brain's neurological control. My levels of ferritin were indeed low, but my blood iron was OK. They say this regimen may take at least 6 months to build up my levels of ferritin. I haven't been tested yet to see if the iron is making any difference. I am not a scientist and applaud Drs Early and Allen for their research and hope I have not misrepresented it.
I have had two treatments of Reiki, which is a laying on of hands energy healing. One treatment was before I started any medication and the other was after. Both times, I had one week of perfect sleep. This raises my curiosity about energy field disorders. Has anyone else tried this?
I also take Synthroid for low thyroid and hormone replacement therapy. I was struck by the number of women who have RLS who also are taking both of these. Have any correlations been studied?
I also have always been able to maintain a low healthy weight until the past few years. Now no matter what I do I keep gaining. I also have experienced great cravings for carbohydrates at night and eating something seems to let me get back to sleep faster. I know this contributes to the weight gain. Does anyone else have both increased RLS and increased weight gain? Have you found anything that helps?
Sincerely interested in finding a cause and a solution,
Terry C., Leesburg, VA
Decreased iron/ferritin has been implicated in the cause of RLS. Many patients with RLS/PLMD do have low levels, but therapy has not always been successful. Drs. Allen and Early are right (of course) in that it does take 6 months of iron therapy to raise levels of iron and ferritin. Let us know how you do at the end of this therapy.
Many treatments may have a Placebo effect, and this may explain why the Reiki treatment works. I do not know anything about this therapy so I cannot say whether this should or should not work. We will see if anyone else reports success with this type of treatment. Weight changes may trigger worsening (or even improvement) in RLS. This is a very inconsistent effect and has not been studied. You might do better and get more sustained sleep by taking a bedtime sedative such as Ambien or Xanax.
Date: Mon, 09 Feb 1998 13:30:22 -0500
Subject: Ultram Withdrawal
Thank you for this valuable web site, it helped me contact a leading RLS specialist. We have tried over a dozen drugs during the last year with at least one from EVERY category listed on your treatment page and I have had little success reducing my leg pain and restlessness. The only drugs which offer me some relief are opioids (Darvocet-N, two 100-650 per day) and Ultram (six 50 mg tabs per day). I alternate taking two days off every two weeks from each drug to prevent tolerance and addiction.
Stopping Darvocet is no problem, but stopping Ultram produces two days of crying, sweating, nausea, chills, depression, loss of appetite etc... My doctor thinks this is unusual and does not attribute it to the Ultram. But to me is seems like classic withdrawal systems (as in opiod withdrawal.)
What do you think? Has there been other reports of Ultram withdrawal problems?
Thank you, Fred
Unfortunately, addiction and withdrawal problems with Ultram are possible and well documented. I have seen several patients who have similar reactions to Ultram, especially at high doses, such as you are taking.
It still may be helpful to try other drugs in the various classes that you have already tried unsuccessfully, as one may work when another has not helped.
Date: Tue, 10 Feb 1998 14:40:23 +1000
Yawn!! I'm 22, and just before Christmas I suddenly developed an intractable case of insomnia. I felt like I was just falling asleep when suddenly something would wake me right back up again. This seemed to go in cycles of a week or two, and after three nights of no sleep, I realized that what was keeping me up was my uncontrollable twitching.
Also, I'd been on St. John's Wort for a month, for mild depression, and at first I thought this caused my insomnia and jerking. But, after a month of being off of it I still was twitching. Now, my twitching is very slight, but has a very odd feeling too it. Anytime I relax throughout the day it's just as likely to occur, especially if I put my legs up. It feels like a strong electric tingling, and then increases to these miniature fibrillations of my muscles all over my legs and arms, and a little bit in my back or stomach or neck --you can sometimes see them, and you can feel them if you put your hand over them lightly. When they get really jumpy, they also jerk or twitch, along with my arms, and sometimes neck.
Although my boyfriend says he's never felt me twitch at night, and thinks I'm crazy. Also, my feet feel asleep, strong pins and needles, all the time. These twitches can occur hundreds of times in the night for weeks on end, and I've become an expert at staying up for days on end. The more tired I get in fact, the worse it is!!! Needless to say it's driving me crazy. I've seen a Neurologist and a Psychiatrist and have been given: Elavil, 30 mg for 1 month, with little effect on my twitching (though I was much more tired); Valium, 10 mg. with no effect; Zoloft, 50 mg. which definitely made it worse; Trazadone, 50 mg. which kind of worked, except I had to go off it after one day because I started seeing double; Dalmane, 30 mg. which failed utterly to help; Halcion, .125 mg which worked very well but made me monstrously depressed after a week; presently I'm on Ambien, 5 mg. which usually helps greatly for 3 or 4 hours and then I wake up, besides which I must take it virtually every night, plus Doxepin, 50 mg., which worked the first two nights, but now isn't helping at all (past three nights).
Also, my Neurologist and Psychiatrist keep telling me I'm having panic attacks all night, and the twitching is just some kind of anxiety disorder (which I had very mildly when I was younger). The thing is, I know I'm not anxious. When I'm twitching, it's uncontrollable, and actually gets worse when I relax, and I have no racing thoughts, no tachycardia, no normal anxiety symptoms. I'm exceedingly sick of being considered a Psychiatric case, and being told that antidepressants will help!
Is this common for sufferers of PLMD, which I'm quite positive I have? Also, how common is it for people to have PLMD without RLS? Or are those funny, creepy, non-painful, electric feelings RLS? Thanks.
95% of RLS sufferers will have PLMD. Only 1/3 or PLMD patients will get RLS. It sounds as if you may have both. Your story is very typical of many of the patients that we see with RLS/PLMD. If the creepy, non-painful, electric feelings make you want to move your legs and are somewhat relieved by moving/walking then you most likely do have RLS.
Anti-depressant medication may help RLS, but as often will worsen RLS, which may have been your experience. The Ambien may be the right choice, but you may need 10 mg instead of 5 mg (please check with your physician before changing your dose) which may help you sleep twice as long (6-8 hours instead of 3-4). A sleep study to show how much PLMD you have might be helpful to put any questions of your diagnosis to rest and help guide your therapy.
A Reply from Sara G.
Subject: Response to RLS and blood calcium
Wow! My blood Calcium is also slightly high, and I also recently developed PLMD (very very pronounced) and possibly RLS (very mildly). I don't know what it means, except that both are linked to Kidney failure, and so is elevated Calcium. I had a kidney infection a year ago, without follow up. Any other insight, fellow sufferers?
We can never say for sure, but your RLS/PLMD probably have nothing to do with your elevated Calcium. There are no reports of these conditions being associated in any way. Your kidney infection has nothing to do with kidney failure and dialysis, which are associated with RLS.
Date: Mon, 09 Feb 1998 23:31:21 -0800
Subject: Marijuana for R.L.S.
I have had RLS symptoms off and on since my teen years and was diagnosed At the Stanford Sleep center about 8 years ago. I am now 50. I have been using Sinemet and it seems to be losing it's effectiveness. I have been looking for alternative drugs to supplement or replace the Sinemet.
Ten years I stopped using marijuana and other than the Sinemet, it's the only drug that I've found helpful. The staff at the sleep center agreed that many of their patients report some success with marijuana. I have elected not to resume use of marijuana for a number of reasons. What interest's me is that I have not heard anyone discuss marijuana and it's potential use for RLS.
I would be interested to hear your medical thoughts about this.
We do get sporadic reports of this drug helping RLS. As we have written before, we cannot recommend marijauna due to it being illegal and not studied yet.
Subject: Can RLS be triggered??
Date: Tue, 10 Feb 98 19:37:31 PST
Hello to all,
I hope this is the proper forum to report an unusual experience that my wife, Mary Ann C., had recently. Here it is in her own words:
"I recently had an unusual experience while receiving a reflexology treatment.
I seldom have a problem with RLS in the morning hours, but as soon as my therapist started working on the ends of my toes (deep massage) on the right foot, my right leg began twitching with the familiar 'involuntary leg movement'. It continued the whole time she worked on that foot. About 15-20 minutes. Meanwhile, my left leg was still calm and unaffected. As soon as she started to work on the left foot (tips of the toes) my left leg also started to jerk. I have never heard of, or experienced these reactions actually triggered by any kind of massage or manipulation before and I wonder if there there is any other documented experience in the research."
There is not much about literature about massage triggering RLS/PLMD. Many patients feel that massage may help rather than hinder. Your experiences are somewhat more unusual, but each RLS sufferer seems to have some individual unique aspects of the disease.
Date: Tue, 10 Feb 1998 21:49:02 -0800
Subject: Restless legs.
I am a 35 yr. old male and have been dealing with restless legs all my life. Only within the last 2 yrs. have I learned that I am not alone. My symptoms are as others, air in my hands and feet, tingling sensations, a need to move around when I get tired. It's torture every night. I'm always tired, and can no longer sleep w/ my partner. My doctor was no help, and through the net, one person had the courage to suggest marijuana.
I realize the danger in the suggestion of it, but for me it's worth the risk. My symptoms completely disappear after I smoke a small amount. I have found it to be effective even after regular usage. (There is something very addictive about a good nights sleep)
I have discovered you should get the best quality you can for the best results, which can be pricey. I also use it only just before I go to bed, and I would warn others that it should be used sensibly. I cannot express how great go through the night without being tortured with Restless Legs.
I hope my info will help.
Keith, Los Angeles.
We will post your letter on our page. As we have written before, we cannot recommend marijauna due to it being illegal and not studied yet. We do get sporadic reports of this drug helping RLS.
You may find it cheaper to use medication prescribed by a physician that may be covered by your insurance.
Subject: RLS and Desipramine
Date: Thu, 12 Feb 1998 15:19:05 -0500
For a number of years I was treated for depression with desipramine. When I stopped taking it, in order to get pregnant, I had really weird withdrawal. Like a creeping sensation in my head if I moved it a certain way. Eventually it disappeared. I got pregnant and immediately developed RLS. I thought I was losing my mind. My doctor thought I was nuts. Finally I was sent to a neurologist who diagnosed me.
After the birth, I was put on Rivotril. It is effective, but I find it very harsh and sedating. My doctor recently put me on desipramine again...this time for RLS...and, unbelievable but at 25 mg per night my RLS disappeared. After a few months it was as if I had developed a resistance to it and we upped the dose to 50 mg. Now it seems to be acting up again.
Is it possible that my initial treatment for depression with desipramine triggered the RLS in the first place? Is it likely that I will have to continue to increase the dosage as I start to "resist" the drug? Lastly, when I do have a couple of bad nights I still revert to Rivotril. Is this combination dangerous?
Desipramine (Norpramin) is one of the common tricyclic anti-depressant. The anti-depressants as a group may make RLS better (as in your case), worse or no effect at all. I do not think that the desipramine treatment for your original depression triggered your RLS, but the withdrawal from this drug may have have brought the RLS on earlier.
It is typical that pregnancy brings on RLS. There is no explanation for why you now need more desipramine to control your RLS, as there is usually no tolerance to this drug. It may be that your RLS is worsening and you need more medication to control it.
You may consider using other drugs to control your RLS.
I cannot comment on the Rivotril, as it is only a Canadian drug, and thus I am not sure what this is.
Subject: Restless Legs
Date: Thu, 12 Feb 1998 14:33:59 -0500
I don't know if I have what you call RLS, but my legs bother me. I am a 46 year old male in general good health except for a heniated disk in my back. My symptoms are, my legs don't hurt or ache they tickle. It is like someone is tickling the bottom of your feet and the sensation goes all the way up your legs. One leg will start to tickle for a while, then when I get up and move around and sit back it down it will stop. Then the other leg will start to bother me and I have to do the same thing. This can happen any time of day not only at night.
At times it is maddening,because you can't concentrate on reading,watching TV,etc. I've had these symptoms all my life,but they seem to have gotten worse since I hurt my back. Do I have RLS? What can I do? Are there any medications or techniques I could try?.
Your description is quite typical of RLS. The strange tickling sensations (which are difficult to describe as pain) which come mostly at rest and are relieved with moving your legs are classical of this disorder.
Please check our RLS Treatment Page for extensive information on what to do for this disorder.
Date: Sun, 15 Feb 1998 22:34:28, -0500
Subject: Names for RLS
I am convinced my wife has RLS!!! I am going to get her to start getting more iron and eliminate caffeine.
Her name for her symptoms is 'Lead Legs'. Her legs feel heavy as if they are full of lead, and she 'has to shake it out'.
Thanks for your letter and your wife's pet name for RLS. Your plan sounds reasonable for a start. If your wife has continued bothersome RLS symptoms not relieved by this treatment, then you might want to consider seeing a physician to obtain prescription medication for her disorder.
Date: Tue, 17 Feb 1998 11:37:19 -0800
Subject: Sinemet Withdrawal
I have been a paraplegic since I had polio in 1951. I have not walked since then but I could stand by hyper- extending my legs and that was what allowed me some relief from RLS for many years. In 1991 I had a stroke which destroyed more muscles and took away my ability to stand. Now, with age and the rebound effect of the Sinemet (which has worked reasonably well for me since 1991 ) I'm suffering from sleep deprivation and in constant pain in my over used and abused arm and shoulder muscles from trying to keep my legs moving most of the night.
Hot baths help sometimes but sometimes my arms are too tired to transfer from my wheelchair to the tub, etc..
My plan is to reduce the Sinemet to three times at night -10, 2 and 6 a.m. and try starting Permax during the day. (I also have intense episodes in the afternoon) It is very difficult because of course I can only sit or lie so I'm aggravating the situation, constantly.
Any suggestions about withdrawing from Sinemet without going crazy would be greatly appreciated.
We can give you some suggestions about withdrawing from Sinemet, but please do this only with the supervision of your physician.
Permax should be added at the same time as you are currently taking/needing your Sinemet. As you increase the Permax dose (which can be started with as little as 1/2 - 1 of the 0.05 mg tablets and increased by 1/2 - 1 tablet for each dose every 3-7 days), you slowly decrease the Sinemet as tolerated. Eventually you can cut down to 2-3 Sinemet per day (or even better, get completely off of the Sinemet). You can also use the Permax during the daytime.
Another approach (which can be used in conjunction with the above technique) is to add other classes of medication. A sedative (such as Xanax or Ambien) can be added at bedtime and thus quickly eliminate the nighttime Sinemet. A narcotic/pain medication (such as Vicodin or Ultram) can also be used instead of Sinemet daytime (if you do not get drowsy with these) or nighttime.
Subject: Anecdotal compounding of RLS
Date: Tue, 17 Feb 1998 22:20:21 -0800
Thanks so much for the information provided by the Southern California RLS Support Group. In particular the RLS/PLMD Treatment Page has been of great interest to me, my sleep physician, and my nephrologist. That information led to my use of Permax, which has been at least partly successful in alleviating my severe RLS symptoms.I want to share some anecdotal information which could be of some benefit to other RLS patients.
First let me point out that I am a 56 year old father of 5 children. I have chronic kidney failure which slowly developed over the past 20 years. I have been on peritoneal dialysis for about 14 months. A tumor on my left kidney was removed, along with 60% of the kidney, about a year and half ago. Recently a new, isolated tumor was identified in a lymph node roughly between the left adrenal gland and the aorta. It is scheduled for removal March 4, 1998. My onset of R LS seems to have coincided with the growth of the new tumor.
The RLS started mildly, but is now severe. I take Permax at night, codeine at bedtime, and Darvon during the day.When the RLS was moderate, I observed what seemed to be a correlation between RLS and my blood pressure medication, Monopril, a common ACE inhibitor. I then began an orderly experiment with Monopril for 3 days, followed by no blood pressure medication for 3 days. I also performed the same experiment with Linoprin, another ACE inhibitor. I did six experimental cycles and found that the onset of RLS correlated with taking the ACE inhibitor. However, the effect lagged by 36 hours.
In other words, if I began taking the ACE inhibitor on Monday morning, RLS would show up on Tuesday evening. Similarly, when I stopped taking the ACE inhibitor, the RLS would go away after 36 hours.Unfortunately, these results cannot be regarded as conclusive, since shortly after the experiment, the RLS returned with a vengeance, with or without the ACE inhibitor. My RLS is now severe, although I am hopeful that there is some correlation with the tumor. If so, I may find relief when it is removed.
In any event, my experience from my moderate RLS days might serve as something to try with a physician 's close supervision, i.e., suspend blood pressure medication for 3 or 4 days and see if the RLS improves.My detailed log of the experiment is available for anyone interested.
Edward J. L., Ph.D.
Date: Thu, 19 Feb 1998 19:54:14 -0600
I have tried pretty much everything to relieve RLS. I am now taking Sinemet but am having to increase the dosage and am having a shorter period of time it works. I experience RLS whenever I don't move my legs for more than 30 seconds. Needless to say, sleep is pretty much an unknown phenomenon.
I am very active and can't exercise enough to get exhausted enough to sleep. Stretching helps, especially when I stretch to the point of causing serious pain. Maybe the pain just detracts from the feeling of electrical charges running through my legs. The feeling often moves to my shoulder and arm, especially on my left side.
I have tried acupuncture and massage but with no prolonged relief. I just found this web site and hope I can find natural sources of relief.
Thank you to all those responsible for and participating in this dissemination of information.
You should be careful with increasing the dose on your Sinemet. The problems with rebound (needing the medication sooner) will only get worse and create more difficulties.
Consider trying Permax, or one of the newer Parkinson's disease medications such as Mirapex. You do not list the drugs that you have already tried. Sometimes that gives us a clue as to other things that may work for you.
Date: Thu, 19 Feb 1998 16:06:27 -0800
My mother suffers from RLS and now I do too. I first saw my family physician 2 weeks ago and he prescribed Klonopin. It worked for about 5 days, but now I'm back to my usual up 3 or 4 times in the night.
I'm seeing my doctor again tomorrow afternoon to see what it is he is going to do next. I guess that since I'm a novice at this I need a little guidance as to how much do I put up with from my doctor. He appeared to know about RLS, but I just don't know how much.
My mother is seeing a neurologist and he put her on Mirapex. What a difference that has made for her -- I have my mother back! When I mentioned the fact to my doctor that my mother was on a Parkinson's Disease drug, he told me that he didn't want to put me on a drug like that right away. I'm trying to gather as much information as I can and your website has been by far the one with the most information.
I look forward to your response.
Klonopin may work well for RLS, but we prefer Xanax or Ambien. Mirapex is a very good drug for RLS, but it has only been available for less than a year. Most non-neurologists or sleep specialists will not be familiar with it and will not like to use it.
Permax is similar to Mirapex and has been used for many years for both RLS and Parkinson's disease. It works well, but most family doctors will be reluctant to use it as it is also mainly used by neurologists and sleep specialists.
The prescribing information is on our Treatment Page, so it may be helpful to copy it and bring it to your doctor. If he can't or won't prescribe them for you, ask to be referred to a neurologist or sleep specialist.
Date: Fri, 20 Feb 1998 22:19:37 -0600
Subject: disability insurance and RLS
Dear So Cal RLS Support Group,
I recently was denied disability insurance for RLS. Do not believe I had significant problems with it (never even finished my first Klonopin prescription -#30- after 18 months). Have been symptom free for well over a year...but the diagnosis sticks...
Am interested to know if any others have found themselves denied insurance for an RLS basis? I certainly do not consider my illness disabling.
Thanks, Garry G.
This is certainly the first time that we have heard of anyone being denied any type of insurance due to RLS. We will post this on the our web page and see if anyone else has had any similar experiences.
Date: Sat, 21 Feb 1998 03:57:13 -0700
Don't know what kind of records you keep from all the night owls who write to you but you and I communicated fairly regularly for a couple weeks last October. I'm the one who was starting out on Mirapex and trying to get off of a 2300/day Sinemet intake. Just thought I'd let you know I'm still hanging in there. Haven't written because didn't have all that much to report.
If you remember, I was taking more Sinemet for rebounding than I was for RLS. That situation hasn't changed. Although I've managed to get the Sinemet down to 11 to 1200 a day; (1) am still taking more Sinemet for rebound than I am for RLS and (2) I seem unable to reduce the Sinemet any lower.
Had another meeting with my doctor last week and the two things I came away from that meeting with are:
So as I said earlier, not a whole lot to report. Am still doing my 4 mg per day of Mirapex, which by the way, does absolutely nothing for REBOUND. I've almost forgotten what real RLS pain feels like.
Which reminds me of an old saying that I think applies to my situation perfectly:
"I HAVE BEEN SO ENGROSSED IN KILLING ALIGATORS THAT I'VE FORGOTTEN THAT MY INITIAL OBJECTIVE WAS TO DRAIN THE SWAMP.
For the last few years I have been so busy fighting REBOUND that I have almost forgotten RLS.
Your case of rebound sounds about as tough as it gets. Mirapex should have been helpful, especially at 4 mg per day (we generally do not like doses above 4.5 mg per day). It may be necessary for you to bite the bullet, and try course # 1 and just get off of the Sinemet. You may have a short spell of very sleepless nights, but in the long run, you will do better.
You may want to add other drugs for that withdrawal period, such as Xanax or the narcotics, to aid you during that tough time. Let us know how you do.
Date: Sat, 21 Feb 1998 21:31:10 -0600
I keep reading that RLS is "life threatening." Please explain this to me in detail. How exactly is it life threatening? Shut-down of certain body organs? Heart failure? I need to know exactly what to expect with this illness, whether I choose to seek treatment or not. Thank you.
Mild to moderate RLS is rarely life threatening. Severe RLS can cause continuous sleepless nights and tormented days. This often results in severe depression problems which can even result in suicide.
The lack of sleep due to RLS or PLMD can also result in decrease daytime alertness and increase the likelihood of a fatal accident driving or when working in situations that require concentration.
Treatment should be sought when the RLS/PLMD symptoms cause decreased sleep and daytime abilities to function.
Subject: RLS and Permax
Date: Sat, 21 Feb 1998 18:05:06 -0800
I have been dealing with RLS/PLMD for over 5 years that I can remember. My symptoms are not real sever except that I can't sleep with my wife very often, like two times in the last year.
My treatment thus far has been sporadic (on my part). I have finally gotten to the point that where I can no longer ignore my "creepy crawly" legs.
Three years I was prescribed Sinemet, I tried it for about two weeks but it seems like I had weird dreams and woke up feeling drugged. Well, anyway, I went on to Oxazepam 10 to 20 mg when I feel that I need a good nights sleep. This works well for sleep but does nothing for PLMD. I can deal with RLS during the day and even in the evenings. I can no longer accept the fact that I can't sleep with my wife.
This may be true but I am working on different meds to find out for sure. Right now I am taking Permax about 0.1 mg two hours before bed. This seems to take care of leg movement but I am back to no sleep due to side effects nasal congestion and headaches. I did go slow with the dose starting out with .05 and building slowly to my current dose. The last week I haven't taken any because I have the worst cold (stuffy nose etc.) that I have had in 5 years (connected to Permax?).
I am thinking about trying Sinemet again, or maybe Mirapex? What are the side effects of Mirapex? Maybe Sinemet CR? I am open to suggestions. I have a excellent neurologist that will work with me until we get it right
If you had trouble with Sinemet in the past, you will likely still have trouble with the slow release, longer acting CR version, especially as your complaint was waking up feeling drugged.
Mirapex is similar to Permax in action, but has a somewhat different side effect profile (see our RLS Treatment page for more details). It may indeed work well without the troublesome side effects that you have had with Permax. Requip is another new drug in the same class that may work well with less unwanted side reactions.
Let us know how you do with your RLS.
Subject: restless legs
Date: Mon, 23 Feb 1998 20:41:32 -0800
My mother has been on Sinemet for 4 years, taking one every six hours for restless RLS. She is not having good results with it now. Is there another drug to replace it. She takes 25 mg now.
Could this drug cause the mouth and lips to become sore and peel?
Permax would be a good drug to replace Sinemet. It should be done with the aid of a doctor who knows how to use these drugs. Other drugs may also work well. Please see our RLS Treatment Page.
I do not think this drug is responsible for your mother's sore and peeling lips.
Date: Mon, 23 Feb 1998 16:27:21 -0800 Subject: RLS and food
Does anyone else find a connection between an onset of RLS and the urge to eat? I have tried everything to relax and distract myself when I have had to get up at night. But I always feel compelled to eat - usually sweet carbohydrates like graham crackers.
My question is this: Is this most likely a reaction to anxiety and am I using food to sedate me or is there actually a reaction to the RLS? Do others get a physiological reaction in their chest that results in something that resembles a panic attack (which I have never had before or apart from the RLS)?
Many patients describe the panic type reaction that you have experienced. Not many have the urge to eat to resolve this panic, but we have heard of this reaction before.
Carbohydrates tend to release endorphins (chemical substances in the brain which acts like heroin) quickly which likely explains why they help make many people feel better quickly.
Date: Tue, 24 Feb 1998 01:05:13 -0600
Subject: Restless Legs Syndrome
This was a very enlightening article. I have had RLS for some time and did not realize what it was. I am 49 years old and it is getting worse. Also I have become anemic which I believe contributes to the problem.
My daughter who is 29 also has it but not to the extent I do.RLS is very disturbing. Huntingtons Disease runs in my family and I was relieved to find out I will not have it and then I find out I have RLS. I have been taking Xanax which helps but it seems to put my brain to sleep and my muscles are still going.
Any suggestions anyone? What about hot tubs?
Anemia, especially if caused by iron deficiency may contribute greatly to RLS problems. Xanax is used to put you (and your brain) to sleep, but it does not stop the leg jerking of PLMD (it does stop the arousals from the leg jerking). As long as you get a good night's sleep with your medication, it should not be a problem.
If you want other medication that does not make you sleepy, then the Parkinson's disease medications such as Permax work very well for many RLS patients.
Hot tubs help some RLS sufferers, but other like cold or even alternating hot and cold. It is very hard to figure this one and there is obviously great individual variability.
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