If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Subject: RLS
Date: Mon, 8 Sep 1997 23:11:20 -0400
Thank you god that I am not crazy after all!!! I have had -it- for along time, (I am now 37). I wanted to cry laugh then yell out loud when I started reading your letters. My wife yelled to me tonight to hurry in and see the TV news report on RLS. I could hardly believe it was really true!
My episodes aren't nightly but about 4-5 times a week. I lay down to sleep and just as I am about to doze off, either one leg or the other will begin to act up. It starts out like it is a build up of energy behind the knee cap that explodes with a jerk of the knee; and this happens about every 15 -30 seconds apart.
I have done many of the things that I have read in your web site; long walks through the house (this isn't appreciated when you are staying at someone else's house!!), hot showers and of course the dreaded one-legged deep knee bends (I usually do about thirty to get any slight relief.). My episodes do not appear to be as drastic as some of what I read. I get them sometimes while riding in a car (usually to and from work which is an hour and a half drive,) but only if I am a passenger not when I am driving. Does anyone else have similar experiences? This one type of occurrence led me to believe that it is psychological.
I have worked nights for fifteen years now because I had a rough time sleeping well at night and working during the day. One thing I did not notice in your letters was that once I fall asleep it does not affect me any more that night. Anyone else out there have this? Thank you for being out there for me. This alone has made getting on the internet more important than ever!!
Gary Allison, in Virginia
Medical Reply
Your experience of having no RLS symptoms while driving but more as a passenger is very typical. This is NOT a psychological problem, but brain activity does seem to affect the RLS symptoms. It has been found that mental activity such as doing math, writing letters or especially working or playing on the computer (computer games) helps suppress RLS.
Many RLS sufferers have noted that if they can fall asleep, then they can sustain the sleep for several hours. The severe cases, however, generally are lucky if they can get 2-4 hours of sleep once they fall asleep (with or without medication).
Date: Wed, 24 Sep 1997 20:37:19 -0500
Subject: Restless legs & Tarpel Tunnel
Hi, I wrote you some months back concerning my problems with RLS. Last year, after testing my circulation and undergoing an electromyogram, it was discovered that I had pinched nerves in both ankles. I've been given cortisone injections in each of my ankles, only one in each foot. The constant pain subsided for approx. 2 months. Now with the change of weather, the pain is returning. I'm very reluctant about receiving more shots.
I also experience burning & some swelling of my feet during the night which always awakens me. Sinemet always helps (25/100) but for only a few hours. I never take a full tablet. I always break the tablet in half and will only take one half in an entire night. The half tablet works the same as taking the entire tablet. Sometimes, I'm able to get by without the Sinemet, (I'll still awaken at intervals) but I manage to catch an hour or two of sleep without interruption until the burning starts again. My orthopedic doctor does not recommend surgery for the tarpel tunnel syndrome and is conservative in helping with the cortisone shots.
What's your opinion? Sometimes the pain causes me stress during the night.
Thanks so much.
Mary
Medical Reply
Sounds as if you have a nerve entrapment problem with or without RLS. That makes your condition quite different than the other RLS patients.
Your orthopedist probably knows best about whether surgery is an option and whether you should have more cortisone injections. If you are not sure, please see another orthopedist for a second opinion.
Staying on the lowest dose of Sinemet for RLS is always a good idea.
Date: Wed, 24 Sep 1997 20:12:41 -0400 (EDT)
Subject: Xanax for RLS
After quitting all the medications, I went through hell with the withdrawal symptoms. To get some sleep, I had to go back on medication. Clonidine made the RLS worse, and Sinemet helped but it made my legs jerk so bad. I decided to go back on Xanax. Xanax is the only drug that does not make my legs jerk (Clonazepam is ok, too, but it makes me sleepy the next morning).
The problem with Xanax is that, I kept waking up after about 1 hour sleep in the first 4 hours. After 4 hours, I could sleep straight for 3-4 hours. During the first 4 hours when I wake up, I feet the RLS and have to get out of bed. I am then able to fall back to sleep after some walking.
My question is; is the waking up after 1 hour during the first half of the night due to the low dosage? I am taking 0.25 mg now. Should I increase to .5 mg to get straight sleep?
Medical Reply
It is hard to say what to do with your Xanax. Your inability to to get much sleep in the first 4 hours, followed by you getting good sleep in the second 4 hours is hard to understand. I therefor am not sure what you should do with the Xanax.
You should discuss it with your doctor, but a trial of Xanax 0.5 mg may be more successful.
Remember to take your drug holidays (2 days off Xanax) every 2 weeks.
Date: Wed, 24 Sep 1997 14:53:10 -0400 (EDT)
Subject: RLS, help me
Hi, my name is Crissi and I suffer from this disorder for as long as I can remember. I thought that I was just weird. I have no medical insurance and don't like the idea of taking drugs. Can you give me information on other remedies I might try? I feel I have severe RLS and I go nights without any kind of sleep. My husband cannot sleep in the same bed when this is happening. I get to the stage where I would just like to cut both legs off.
If there is any information on what causes this I would like this info also.
Medical Reply
Sorry, not much is known about the causes of RLS. Check out our RLS Treatment Page for other remedies. Unfortunately, in our experience, most of the severe cases of RLS will need medication in order to have the terrible RLS symptoms relieved.
Date: Sat, 27 Sep 1997 18:07:46 -0400
Subject: RLS
I have RLS and I can't take so many of the drugs that the doctor has prescribed. Therfor, I got to my wits end and started Vitamins & Minerals that a lady sent me by email. Maybe you could tell me what drugs are usually used. This lady "Alice" has been very helpful and I believe the vitamins etc. are going to help.
My big question is, I went to a Reflexologist for the feet and immediately the RLS got so much worse that I had to ask my doctor for medications. If you can pass any information along, I would appreciate it.
Thanks,
Jeanette
Medical Reply
It is hard to give you a definitive answer as you have not given us details of the medications that you have tried for RLS and why you could not take them. With this information it might be possible to point you to other medications or treatments which may be helpful. Check out out Treatment page for more general information.
Vitamins and minerals sent to you by email (which are generally touted to cure all) are unlikely to be of benefit in RLS. Reflexology has yet to be proven as a reliable therapy for RLS.
Answer from Jeanette
Date: Sun, 28 Sep 1997 10:30:44 -0400
Subject: RLS
When it first started years ago, the doctor gave me 10 mg of Amitriptyline and it worked fine, but it makes me hungry and I can't afford to gain weight. But this spring when it got real bad he put me on, Neurontin 100 mg, two capsules, three time per day and Klonopin 0.5 mg at bedtime, Carbi/Levo (Sinemet) 10/100, three per day. All this together just floored me. I couldn't think straight and it effected my balance.
Right now he has me on Doxepin 25 mg, one at bedtime and three of the Carbi/Levo 10/100. It started to quiet down the RLS, but it is horrible some nights and I don't lay down until morning. If you can't suggest something else, I will contact my doctor about it.
I must tell you, this last spring they found two stomach ulcers, so I have been on Prilosec & Tagment. I do get knee pain with it and walking will help it. Strange isn't it?
I do appreciate your kindness with answering my questions. I would appreciate your honest opinion on the use of Vitamins and Minerals. I was desperate and I just don't know what to do. Is it a nerve disorder? My doctor has me scheduled to see a neurologist in December, do you think this is the right way to go?
Thanks Again
Jeanette
Medical Reply
Amitriptyline and Doxepin are both antidepressants which have about as good a chance of worsening RLS as helping it. These are not high on our list for treating RLS. Klonopin may cause significant daytime sleepiness, although it usually works well for nighttime RLS. A better choice is Xanax or Ambien.
Sinemet (Carbi/Levo) can work well, but the 25/100 tend to be used more than the 10/100 tablets. Permax may be even a better drug (in the Parkinson's class of medication) but it requires the doctor to know how to prescribe it (you can bring your doctor our treatment page which details how to do this). Neurontin is a good drug, but does not work in everyone. The narcotic medications can be very helpful, especially at bedtime.
The use of vitamins in our opinion is not helpful, but as they usually do not cause side effects there is generally no harm in taking them. A neurologist may be helpful as they know how to use many of the RLS drugs (which are primarily used for several different neurological disorders) and often have significant experience with RLS.
Date: Sun, 28 Sep 1997 20:02:08 -0400 (EDT)
Subject: advice on medications
You have been nice enough to offer me advise in the past on medications. I could use some more assistance. I have been on Klonopin for several years and have become more tolerant of it. So I asked my neurologist for Sinemet. I couldn't tolerate it well, became very irritable, etc. Then I asked for Permax. I first tried it in May. It certainly helped me sleep, but I felt like a Mack truck ran me over. After a couple days I stopped.
I teach school. So during the summer and no sleep (even with Klonopin) I tried it again. Since I do not have to be anywhere "important", I kept trying the Permax again, reducing doses, etc. I have Permax .05 mg and cut them in half....I could sleep with the 1/2 of .05 Permax and the help of 1 mg Klonopin (a good reduction), but still felt lousy...not as bad as when I first took Permax, ..but not feeling good. My neurologist encouraged me to continue using the Permax even though I told him it made me feel bad...still tired ....I suggested Xanax, but he said it is too addictive.
He has given me a prescription for Adderall for ADD (Attention Defecit Disorder), Zoloft for depression, and Permax and Klonopin for RLS. I didn't take the Adderall over the summer, as I felt I was taking too many medications. So now that school is back, he has encouraged me to take the Adderall, which does help me focus (I get very befuddled, have a hard time completing things, and at home extremely disorganized).....but I think I could do with out the Adderall all the time, if I didn't feel so tired now....the doctor feels the Adderall will combat the side effects of the Permax. The bottom line is....I feel like my medications have gotten out of hand.
He is a patient neurologist and I'm a born complainer...but now I don't know what I need and what I don't. Yes, I am a depressed person and the Zoloft helps. Yes I definitely have RLS and need something to sleep. I can live without the Adderall...but it helps. But the Klonopin doesn't work like it did and the Permax makes me feel ill. Yet what can I suggest to my doctor? I realize this is rambling, but I'd really like a second opinion and really don't know where to go. It took me years to find this doctor who was at least willing to listen and acknowledge RLS exists.
Thanks,
Jan.
Medical Reply
It sounds as if you are not doing well with your current medications. Xanax is not any more addictive than Klonopin. They are both benzodiazepines and have many of the same clinical properties, except that Klonopin has a much longer half life and thus stays in your system longer (which is a likely source of your daytime fatigue/feeling lousy problems).
I would recommend that you ask your neurologist about trying Xanax or Ambien which are shorter acting sedatives that are less likely to have daytime side effects. Also, you should be taking drug holidays of at least two days off the sedative every two weeks to insure that you do not develop tolerance to the medication (as you may have already done with Klonopin).
Before you give up on the Permax, see how you do on the Permax without the Klonopin. Another good choice might be to try a pain medication (Vicodin, for example) at bedtime to help get you to sleep and decrease your RLS symptoms.
Date: Mon, 29 Sep 1997 19:15:19 -0500
Subject: more info
I am looking for additional information on RLS. I have been diagnosed via sleep study, but also have other symptoms, such as: funny sensation in my head just as my legs or other parts of my body jerks up. I don't have just small twitches.
I have been to many doctors. I am currently taking Ativan .5 only in the evening. Most of the time it helps, but I am tired during the day. Some doctors have said that this is just stress, but I disagree.
Please help.
J.S.
Medical Reply
Additional information can be found on our web page, the web page of the RLS Foundation ( RLS Foundation Home Page), or by ordering the book, Sleep Thief, published by Galaxy Books.
The Ativan may be causing some daytime fatigue. Consider switching to Xanax or Ambien which have less daytime spill over effects.
Date: Mon, 29 Sep 1997 23:34:02 -0400
Subject: TAKING AN AXE TO MY RIGHT FOOT!!!!
What a relief to find your website. I have believed that I was the only person in the world with this problem. I am a 46 year old female. When I was in my teens (M.A.S.H. the movie was playing and I went to see it with every boy I knew so that he could "tickle" my right wrist) I had these creepy electric feelings in my right wrist and hand. About 15 years ago I was diagnosed - incorrectly - with Morton's neuroma.
One surgery was performed. As soon as the anesthetic wore off, I knew it didn't work. After the incision healed, the podiatrist cut on the other side of my fourth toe, right foot. Again - no relief from the "restlessness - tingling" pain (if it can be called pain) was forthcoming. I suffered in silence - I am certain that all people who fly into a rage and commit random acts of violence have what I now know to be RLS.
Approximately 6 years ago, I went to another podiatrist who could not detect anything wrong but was sympathetic to the problem. He fitted me with an insert which did help quite a bit for a while. He also gave me a cortizone shot and wrapped my foot with tape and told me to leave the tape on for several days. I discovered that the shot did nothing, but that the tight wrapping of my foot seemed to help quite a bit.
I can tell when it is going to rain, when I am tired, or am experiencing PMS, or have been sitting in one place too long by the "pain" in my right foot. I then wrap the foot TIGHTLY with an ace bandage, almost to the point of numbness. This will enable me to at least get a pretty good night's sleep without experiencing the symptoms. I find that I have the same discomfort and symptoms in my right wrist and hand directly down from the fourth finger of that hand. Do you feel it would be harmful to wrap the wrist tightly for sleep to the point of numbness? Seems too many veins there. I also wonder if anyone else feels the need to chop off the offending foot once in a while.
I take Zoloft (50 mg) daily and Elavil (25 mg) daily for fibromyalgia. Will any of the medications which you advise be able to be taken with these other two medications? Thank you in advance for any light you may be able to shed on this "nerve-wracking" problem.
P.S.
I wanted to say that I can deal with the frantic foot for sleeping on most nights by the wrapping of the ace bandage. I am more concerned with daytime relief. It is really hard to function when you are totally clenched in anticipation of the next "attack". I always wondered how the rest of the world felt being "normal" and not either anticipating the attack or living through one.
In your list of treatments, you say that Permax seems most helpful with daytime RLS. Can it be taken with Zoloft and Elavil? Please say yes and I will immediately contact my GP, give him a copy of the treatments, and get ready to live like a normal person.
Thanks.
Tina Wells
Medical Reply
There should be no problem taking Permax with Zoloft or Elavil. Remember, that both those antidepressants may worsen RLS. If the Parkinsonian medications (Sinemet, Permax, Parlodel, and Eldepryl ) do not work, you can also consider the pain medications (especially Ultram) or Neurontin, which should not affect your daytime function.
Date: Tue, 30 Sep 1997 00:27:33 -0400 (EDT)
Subject: Ambiem
In the medical section, you mentioned that Ambiem last for 2.5 hours. Is it true? I am taking 10 mg pill and it seems to last longer than that.
Medical Reply
What is in the Treatment section about Ambien is that it has a half life of 2.5 hours. That means that in 2 and half hours, half of the original dose of Ambien is metabolized out of your body. If you take 10 mg at midnight, then at 2:30 AM, only 5 mg will be left in your body. At 5:00 AM, only 2.5 mg will be left, and at 7:30 in the morning 2.5 mg will be left (which should not leave you drowsy).
If 10 mg makes you sleepy in the morning, then starting with a lower dose at bedtime will get you to a lower dose in the morning. By knowing the half life of a drug, you can calculate how much of the drug will be left in the morning. This can of course vary with each person's metabolism and other factors.
Date: Tue, 30 Sep 1997 15:28:08 -0700
Subject: Me, too.
Thank heavens for the Internet!
Until I found this support group, I was the only person I knew with this problem. I've had it for as long as I can remember. I remember that, even as a small child, just as I was dropping off to sleep, I would have a sort of 'waking dream' that I was falling, and would suddenly be jerked wide awake by a huge spasm of both legs. Now, I'm 52, and have great difficulty sitting still for very long... achy, butterflies flying feelings in my lower back and under my kneecaps. Walking relieves the problem, but only while I'm walking, and I can't walk 24 hours a day! Taking a **really** hot bath lets me get to sleep, but I'm awake 4 or 5 hours later, and then no more sleep unless I get back into the tub.
Sedation makes the problem go away. The only time I ever really awoke from sleep feeling rested was after minor dental surgery, when they gave me sodium pentothal and nitrous oxide. But that certainly isn't useful as a long term solution.
I've never been much good at sleeping, but I always just thought it was stress or being over anxious or that I was just weird. It's definitely become worse over the years. I've tried to talk to health care professionals about this, and gotten blank stares, so I gave up on that.
Well, I'm on the way to my local pharmacy to try to find some Q-Vel. It may not help but it's certainly worth trying as a first resort. Thanks so much to all of you for your help and suggestions, and for giving me the confidence that this is *not* 'just my imagination'.
Pat N.
Austin, Texas
Medical Reply
Q-Vel (quinine) may be of some help in RLS, but you may want to consider seeing your physician or a sleep specialist and get some more signficant treatment. You have already noted that sedative medication really helps, so sedative medication or other of the primary RLS medications (see treatment page) may make your life a lot more pleasant.
Date: Wed, 1 Oct 1997 16:30:02 +0000
Subject: Re: RLS ARRIVES ON THE FENCE
I was going to wait a little longer for more testing before offering my latest hypothesis, but in case it helps anyone, here goes -
1) It seems like there's two components to my condition - First the legs themselves, and I have only my stretching and leg shaking exercises to alleviate that briefly from time to time. I also noticed the suggestion from someone else's doctor that the relentless tingling is in fact a very low level of pain - below what we would recognize as pain. And maybe it just progresses to a greater pain level in time. (I just hope it's a real long time before I progress to any real pain, because I would have no answer.)
2) Second, there is the brain's response to the RLS crawling tingle. I feel it's my brain that responds with the relentless urge to move the muscle (a bit like an animal driven to distraction by flies on its skin). If it was pain, the brain would probably have a slightly different approach to seeking respite. Because it's the brain I can understand why I can sometimes overcome the urge to move for a few minutes by concentrating on something else. Maybe that's why it seems worse when on the border between awake and asleep, when the brain's not got anything else to take its interest.
Very recently I have been experimenting with a 'medication' at night and have noticed that ALTHOUGH MY LEGS STILL TINGLE, I NO LONGER HAVE ANY URGE TO MOVE THEM, AND THERE IS NO MIND-BENDING FRUSTRATION. I can acknowledge the tingle, but I DON'T CARE, and I CAN SLEEP (so long as work worries / excitement don't just keep the mind chugging along anyway....).
I must emphasize I am still experimenting, and I know I may be in the placebo zone right now, but if I have any continuing luck I'll keep you posted.
Best wishes to everyone,
Colin Bartram
Tamworth, Staffordshire
Date: Sun, 5 Oct 1997 01:21:50 -0700
I'm in my 13th year with RLS. It's gone way past the "Lose A Few Hours Sleep" stage. It's heavy duty pain. Several years ago, curious to find out just how bad the pain could get, I stopped my medication (Sinemet) at 8am. By 3pm I was on the floor of my garage close to passing out from the pain. So much for my quest for knowledge. Haven't tried it since. I tell this story not to flaunt any battle scars or get into a "who has the most pain" debate. It sets the stage for how, over the years, I am in trouble.
Sinemet no longer does for me what it used to do. Less bang for the buck. Ten years ago my daily dosage was about three 25/250 mg a day. Today it takes about eight or nine 25/250's to keep the pain at bay. Ten years ago one 25/250 got me about 3 hours sleep. Today, about an hour. Two years ago my doctor told me this day was coming. It's here! The prognosis is that one day soon, Sinemet will do no more for me than a glass of water. To me this is frightening.
The staff at Mayo (Scottsdale, Az) have tried all the other drugs. Nothing else worked. Two weeks ago when I'm at Mayo on another matter my doctor informed me that there is a new drug out, just approved in August, that shows promise. It's called Mirapex (Pramipexole). He started me on it that day. So far the jury is still out but early signs are positive. I'm feeling some hope for the first time in years. Wanted to tell you about this because in reading your "Comprehensive Review of Medications used in treating RLS and PLMD" I saw no mention of Mirapex.
As an aside, I read about Permax in your report. When my doctor tried Permax with me I already had "too many years" with Sinemet and all it did was make me sick. I'm told that if I had been given Permax "in the beginning" it might have worked. Which leads me to another point: Over the years my experiences with doctors has been a little less than great. I've been patronized, ignored, referred elsewhere (anywhere), operated on, laughed at, been given little battery pack things to wear, sent to Sleep Clinics (that was a crock) but rarely helped.
These experiences have given me my one and only Iron Clad Rule regarding life with RLS. (1) Get a doctor who knows what he/she is doing and (2) CARES. Without trying to be funny because it certainly isn't, if you have to explain RLS to the doctor then you're probably in the wrong building. I've had to do that a few times and it didn't fill me with warmth.
Would appreciate hearing from you if you have any data on Mirapex. Or for that matter would appreciate hearing from you if you don't have any data on Mirapex.
I am Wray S.
Medical Reply
Your experiences with Sinemet are unfortunately not too uncommon, although, not many patients get to as high a dose as you are taking. Permax may still be an alternative, but you may have to start at a very low dose (half of a 0.05 mg tablet), then increasing the dose very slowly while slowly decreasing the Sinemet dose. With the rebound and augmentation that you are having with Sinemet, it may be very difficult to impossible to get off the Sinemet.
We have heard of Mirapex, but have had no experience with the drug here. As we tend to fairly conservative, we usually like to wait for more information on how well it works before we get on the bandwagon. Please send us more details on how you do in the future with the Mirapex.
Date: Wed, 8 Oct 1997 05:00:12 -0400 (EDT)
Subject: Ambien
I have been taking Ambien for about 2 weeks now after trying Clonazepam, Xanax, Sinemet, and Clonidine. The things you described about Ambien in the medication section are all true! It has no side effects, no withdrawal symptoms, no developing tolerance and specially, it gives real sleep. So far, so good.
Thanks for the valuable info.
Medical Reply
Even though the literature and the manufacturers of Ambien claim there is no tolerance or addiction, we tend to be a little more conservative and cautious. We therefor still advise a drug holiday of 2 days off Ambien every 2 weeks.
Date: Fri, 10 Oct 1997 21:05:42 -0400 (EDT)
Subject: RLS
Why is RLS potentially serious?
Medical Reply
Read the letters of the RLS sufferers that are severely affected and you will get a good idea of how RLS can be a serious problem. Many RLS patients (especially ones who have not yet gotten medical help for their problem) may have very painful RLS feelings in their limbs much of the day and all of the night. This can sleep deprive them and, in combination with the constant pain, can become a significant source of depression and even evoke suicidal thoughts (to escape the constant unpleasant leg feelings).
Date: Tue, 14 Oct 1997 22:52:47 -0400 (EDT)
Subject: "Tremors" in my Left Foot
I've written you a few times about RLS and have appreciated your quick, helpful replies. My switch from Sinemet to Permax has done the trick to relieve my RLS "pain". However, I'm still experiencing the twinges/tremors in my left foot and am being kept awake to a certain extent (although it's usually a pleasant quasi-conscience state).
Dr. Allen Douma (who answers medical questions in the Syracuse, NY newspaper) responded to a woman about her leg-muscle spasms and her use of Quazepam (the timing of her spasms seems to parallel RLS symptoms - I suspect she may have mild RLS and not know it). Dr. Douma suggested the use of Quinine. Is Quinine effective for muscle spasms/tremors/twinges? Is Quinine something I should suggest to my doctor for a try?
Again, thanks for your responses.
G1B4 in Syracuse, New York (10/14/97)
Medical Reply
I am glad to hear that you are doing well with the therapy that was suggested.
Quinine is a good medicine for muscle cramping. If muscle spasm and twinges mean (remember these are lay man's terms, not medical terms) the same as muscle cramping then Quinine would help. Muscle tremors sounds like it is not similar to muscle cramping and would likely not respond to Quinine.
Quinine does not generally help RLS. If your twinges are more related to PLMD or residual RLS, then a sedative would be helpful (as it helped the lady who wrote to Dr. Douma).
Date: Thu, 16 Oct 1997 18:53:08 -0700
Subject: Message from Internet
I hope to have some preliminary data for you in a few weeks on my own "trial" of Mirapex (Pramipexole). The Mayo Clinic started me out on Mirapex at .25 mg / 3x a day increasing every 3 days until we reached my current level of 1 mg/ 3x a day. I'm to stay at this level until 11/8 when I'm to give them some status. A little confusing to me but I have faith in my doctor is that he doesn't want me to try to reduce the Sinemet until 11/8.
Interesting and also quite discouraging to me is that for a couple years now what wakes me up in the middle of the night is not the RLS pain but what I have come to call Sinemet withdrawal. Itching all over, runny nose (like a faucet), jerking as if in pain, spasms, etc. No RLS pain. If I were to wait another hour or so the pain would come (in spades). However, obsessed with the need to get some sleep, I take a Sinemet, wait for an hour or so, the symptoms disappear, I go to sleep and repeat the whole process over again in about 2 hours.
I haven't treated real live RLS pain in quite some time. I'm too busy treating the effects of the treatment and this really troubles me. Is this what you were referring to as "rebound and augmentation" in your 10/6 email to me? Weird, huh?
Will get back to you re Mirapex as soon as I know anything.
Thanks. It's good to have someone to talk with about this stuff.
Wray S.
Medical Reply
Thanks for the update on your trial of Mirapex. Please send me more info on how it works for you in the future. Mirapex is now on our Treatment page.
Your symptoms are likely due to the rebound and augmentation as you have noted. Hopefully, as you wean off Sinemet, these problems will go away.
Date: Tue, 21 Oct 1997 05:45:45 -0400 (EDT)
Subject: How the drug work
I have been taking different kinds of drug for RLS: Xanax, Clonazepam, and Ambien. My question is that do these drugs make you feel so sleepy that you don't feel the RLS, or they are actually working the RLS off and the side effect is sleepiness?
I guess what I am asking is what is the main purpose of these drugs? By the way, I know research is being done, but have they ever come out with a real drug for RLS yet? Most of the existing drugs used to treat RLS now are for other diseases, aren't they?
Medical Reply
Xanax, Klonopin, and Ambien are all sedatives and thus will make you sleepy. It is not certain how these drugs work in RLS, but a good part of their success in RLS, is likely as you suggested, that they keep you asleep so you don't notice the RLS.
In PLMD, there is generally no significant decrease in the amount of leg jerks, but the arousals from the leg jerks are decreased. Research is being done on RLS, but we still do not know what causes RLS and how and why the painful feeling are generated. That is why we are presently limited to using existing drugs that have positive effects on RLS. Once we can figure out the mechanism of RLS pain, then we will be able to develop specific drugs to treat it.
Date: Wed, 22 Oct 97 12:27:43 -0700
I recommend calcium magnesium zinc vitamins. Also try folic acid vitamins. These are all readily available at most health food stores. I believe RLS is a vitamin deficiency. My problems are relieved by by these vitamins. The amount you need may take some experimenting.
It is interesting if sad that so many of us take years before we acknowledge we have this problem and do something about it. Insomnia can sometimes be helped by turning around and putting your feet where your head is and vice versa. I can't say why but it works.
Best wishes to all
Paul K.
Medical Reply
Thanks for your letter. Unfortunately, not all RLS sufferers are helped by vitamins.
Date: Wed, 22 Oct 1997 07:16:32 -0400
I remember having RLS since I was at least 5 or 6, kicking my legs at night. I don't recall if my parents were afflicted with this or not. I am 39 now and the RLS seems to come in periodic waves. Thankfully, it affects me mostly at night. I don't know what I would do if it bugged me all day, too.
Right now, I'm attempting to quit smoking (2 weeks, now) and its gotten much worse. I'm up every night now. It's driving me crazy. I'd like to chop off my legs, except with my luck, I'd have to endure that phantom pain thing. The only thing that helps right now is if I keep working my legs till my knees 'crack'. At this point, that dosen't seem to be working either. Then I'll try the deep knee bends. That still works most of the time.
I have no clue who to talk to around here. I live in northeast Pennsylvania, and have no family doctor, and even if I did, I'm quite sure I'd get a condescending reaction. 'It's all in your head'. I do not have tons of money. And I think my 4 yr old may have the same problem, though I can't get him to understand me about this, yet.
If someone could help me find a doctor who will be willing to help me, not drug me up (no offense to those who have found peace with pharmaceuticals),like a guinea pig, I'd appreciate it.
Keith
Medical Reply
Medication is often the only thing that will significantly help severe RLS (which is what is sound like you have). Some of the medication may leave you "drugged", but you can usually find (often by trial and error) an RLS medication that will help you without drugging you.
For a sleep specialist in your area check the American Sleep Disorders Association (ASDA) - This is the official association of sleep professionals. This may help you find a sleep professional in your area. If you want a support group close to you then check the Restless Legs Foundation Support Page - This is the RLS Foundation's support page. Locate a support group in your area or get brochures, newsletters and other information on RLS. If there is no local help easily available to you, then make a copy of our treatment section and look for a local general doctor or neurologist who will help you.
Good luck,
Subject: Going Crazy!
Date: Thu, 23 Oct 1997 17:52:46 -0500
I am a 54 year old lady who has had problems with restless legs off and on most of my life. Now it is constant. I have been on the medicine they give to Parkinson patients and now I have the problem in the daytime whereas before it was at night. When I first started on it, it was immediately effective and I thought I had died and gone to heaven. At last, I thought.
Over the counter Q-Vel and the like are a total waste of my time. I exercise my legs sometimes all night, beat on them and anything else I can think of. When I finally manage to fall asleep in the wee hours of the morning, the rest of the day I am weak from all the jumping around, walking and beating on them I have done. There are times when amputation does sound tempting but then I realize that's a little severe and I might regret it. Since this doesn't seem to be life-threating, although it is very stressful and, therefore, must cause problems in other areas of ones health, I don't know if anyone will come up with a cure.
My dog likes to sleep with me and even she is getting tired of me leaping around all night. I wouldn't care if I kicked in my sleep as long as I could go to sleep. The rest is everyone else's problem. They can get out of my bed.
At the moment I am contemplating going off the medication I am on so at least I, hopefully, won't have the problem in the daytime. As I type this, I would like to say I am dead tired. So I have said my piece and wish all the people with this problem luck. Each and everyone of you have my deepest sympathy.
I try to remember, other people have worse problems but after a night of horror, I find it hard to be so noble.
Good luck!
Nancy
Medical Reply
You do not say what Parkinson's disease medication you are taking. RLS does tend to get worse as we get older, but it is still quite treatable in most patients. If you are on Sinemet, then raising the dose would be a problem (see our Treatment Page which discusses augmentation and rebound with Sinemet).
There are Parkinson's disease medications, such as Permax, which work better in moderate to severe RLS. There are also many other classes of medication to try if the Parkinson's disease ones do not help. Please check with your doctor and see if you can get additional treatment.
Reply from Nancy
Subject: Re: Thanks!
Date: Fri, 24 Oct 1997 18:02:27 -0500
Thanks for your response. I am on Sinemet. I keep thinking I will quit it but I am too cowardly at the moment. I plan to discuss other things with the doctor but I find most of them reluctant to give out any drug. Personally, I don't care if I get addicted to something as long as they don't take it away. I have been cutting the Sinemet in half--one at noon and one at bedtime. This seems to help more over the long haul. I suspect I should go to a sleep disorder center but I have other things to do at the moment and don't want to take the time. Before I went on Sinemet, I didn't have any problem in the daytime. I think if I quit that, maybe at least that would go away. Maybe I am kidding myself.
Anyway, thanks for your time.
Nancy
Medical Reply
The increase in the RLS during the daytime could possibly be due to the Sinemet (called rebound or augmentation), although that generally only occurs at doses of more than 3 Sinemet 25/100 per day. There is no concern about addiction to Sinemet, but the above problems which happen at higher doses are a concern.
Another likely cause of the worsening of your RLS might be age. As you get older, the RLS usually tends to worsen. You do not need to go to a sleep disorder clinic, but you should see a doctor who can treat your RLS so that you are mostly symptom free.
Date: Fri, 24 Oct 97 11:10:51 -0700
Came across your RLS page today and wanted to thank you for the information. Nice to know I'm not alone. I started to have the problem when I was around 50 years old, I'm now 56. I have been using carbidopa/levodopa 25/100mg one tablet before bedtime and found it to be very effective, very seldom do I have the problem during the daytime.
Add me to your list of happy users of Carbidopa/Levodopa 25/100
Again thanks for your web page.
P.S. I became aware of many people having this problem when I was tuned to the Rush Limbaugh radio program. In his own way he is making people aware of this problem...even if he does make fun of it the word is getting out ...we should all send him a thank you note...a nice thank you note.
Barry K.
Medical Reply
Thanks for your note. Sinemet (carbidopa/levodopa) can be a very good drug for RLS. If you need more of it in the future, please try to stay under 3 per day.
Date: Fri, 24 Oct 1997 00:46:04 -0700
Subject: RLS Questions
About a year ago I finally got up the nerve to tell a doctor about my "Jumpy Life" and he nodded somberly and said "Restless Leg Syndrome." I knew it was not entirely in my head since my grandmother suffered from it in her later years, and my aunt also has it. I've had RLS since childhood but it is getting worse with age. I'm 35 now. Anyway, my doc said there wasn't anything that could be done about it, but I felt better having an official name for it. Then one sleepless night I found your page. The rest(less) is history.
I have the type that bothers me for a few months, then takes a month or two off and then shows up to surprise me when I've gotten used to normal life again. I can often do some stretching (lower back especially seems to help) and then jump right into bed and sleep. Once I get to sleep, if something wakes me up within about an hour the RLS is usually really bad. I just feel like I've been plugged in. I was wondering if there was a way to hook me up to a generator to save on our electric bill :-)
My aunt has found relief for her RLS since she moved to a better neighborhood where she can take a daily walk. I'm not currently doing any regular exercise but I am thinking about it. Any idea what percentage of people with RLS are helped with exercise? Must it be done daily to have an effect--if I exercise four days a week will I still suffer on three? How long after starting an exercise program might I see an improvement? Any idea why exercise might help?
I am a nursing mother, and hoping to have more children in the next couple of years, so I am very reluctant to use medications to control my RLS, but I have to get more/better sleep to keep up with the demands of motherhood. Are any of the meds okay for nursing or pregnant mothers? What are the most successful natural(non-medication) remedies? (Top ten for the medically squeamish.)
Another question: a few days ago I had cause to take a pseudo-ephedrine at about 5 or 6 pm. Within 30 minutes RLS "kicked" in. Although I do have it at different times of the day occasionally, this episode was pretty strong for that hour. Any relationship, or just a coincidence?
Finally, when I was a child, I remember I always had RLS in the car when coming home from a party or outing past normal bedtime. That was the only time I had it, and the cure was to fall asleep. As such, I was wondering if there was any relationship between RLS and being overtired. I've tried maintaining regular bedtimes and wake times in the past, but that gets thrown out on the first night of "jumpy life" without question.
I know that this site has a pharmacological bent, but I hope you are able to answer some of these questions nonetheless. Thank you for your assistance.
Marji
Medical Reply
We tend to have a "pharmacological bent" on our page for a few reasons. Although the non drug treatments can be very helpful for many RLS patients, most patients with severe RLS will need medication to get appropriate relief of their symptoms. The non drug treatments, such as stretching, help mild to moderate RLS symptoms in a significant number of RLS sufferers, but they tend not to be able to completely relieve RLS in most patients. We are also trying to give patients and doctors a resource for using drugs to help RLS.
I am not sure what percentage of RLS patients are helped by exercises, but from hearing from many, I would have to estimate that a high percentage are helped by light exercise (walking) or stretching. The exercise needs to be done on the same day to be effective. It is not known why exercise helps.
Sudafed (pseudo-ephedrine) is a stimulant that can worsen RLS (similar to caffeine).
Pregnant mothers can take medications in the sedative class (but please check with you obstetrician) and nursing mothers can probably do the same, but some of the sedative will get into the milk (so please check with your pediatrician).
Natural remedies are many in RLS, but unfortunately most help only a few and thus can not be recommended for the majority. Many are listed on our web site, but there is no list of the top ten as none have been medically studied.
Subject: RLS
Date: Sat, 25 Oct 1997 15:59:01 -0700
I stopped eating red meats about 18 months ago, shortly after RLS started. At first it seemed to happen only at night when I was traveling. Nor it comes 4-5 nights a week. I am 57 and very active physically (Tennis or Racquetball 5 days a week). I have been to three doctors (no results), they don't seem to have any answers or real solutions. One said it is in my head, one said I should do stretching after I exercise and the last had no answer. I have had two very extensive physicals in the past three months and they show all normals.
Has anyone reported any problem between eating meat (high in iron) and not eating as far as RLS is concerned. Any ideas, help would be appreciated.
Chuck I.
Medical Reply
First of all, low iron levels, not high ones have been associated with causing RLS. Some people notice that eating special foods (ice cream for example) can trigger RLS. This happens only in a minority of patients, so the reason for a relationship with food is difficult to speculate on.
Your real problem is that you do not have a physician knowledgable or who can help you with RLS. Your RLS symptoms can likely be relieved with appropriate care. Make a copy of our Treatment page and have your family doctor look through it and then treat you. If your family doctor cannot or will not help you, then find a sleep specialist or neurologist who will.
You do not have to suffer with RLS these days as help is easily available.
Date: Sun, 26 Oct 1997 16:00:22 -0500
Subject: RLS
I can't believe it. For 45 years I have suffered from this disease and first heard of it on ABC News a month ago. I stand during movies; only sit in aisle seats, awaken at 3 am and I am up until 6 every night. It just dawned on me that I sleep much better in the winter. After reading all of the info on the net I can find, I realize it must be the warmth generated by the electric mattress pad which I turn on an hour before getting into bed.
I've never used the heat in the summer and have attributed my sleep patterns (sleep easily in winter; very "energetic" and "restless" all summer long) to light exposure instead of to heat. Nothing else seems to work.
My dad had this; my two sons also have RLS. I used to put heating pads on their legs when they had "growing pains"
Does anyone else think heat is the answer?
Sally D.
Medical Reply
Heat does work for some RLS sufferers. Many RLS patients (you can read this in many of the patient letters) will alternate hot and cold water to get relief. Temperature, definitely plays a role, but it can be very confusing.
Date: Mon, 27 Oct 1997 12:28:26 -0500 (EST)
Subject: RLS
Thank you for your web site!! I have had RLS for 3 years (I am a 50 year old female). I thought I had everything from a bad back to MS. Last week I heard Rush Limbaugh saying how the RLS sufferers accused him of insensitivity, when that wasn't his intent at all. I thought, restless legs? That's me. Now that I've checked the Internet, I find there are many people with this problem.
Mine is mostly the feeling of an electric current every 20-30 seconds causing my leg to jerk as I'm trying to fall asleep. My dad had it, but thought it was caused by the broken leg he had at 18 that wasn't set correctly.
I am going to try a few changes in my eating, exercising, vitamins, etc. to see if that helps. Anyway, I plan to continue reading and getting involved.
Thanks!
Loris B.
Westlake Village, CA
Date: Tue, 28 Oct 1997 09:44:53 -0600
Subject: restless legs syndrome
How interesting that there is a web page about this condition. I have suffered from restless legs for years and finally made the connection between my legs having to constantly move and being tired. Have any other readers made this discovery?
Do you think restless legs could have something to do with the build up of carbon dioxide, or not getting enough oxygen in the blood? I have not read enough about this to find out if it's already been discussed. My father also has restless legs so I'm sure that I inherited it from him.
Thank you for an interesting page.
Melanie O.
Medical Reply
It is very common to have family members with RLS as about 50% of RLS is genetically inherited. Many RLS sufferers have made the connection between their leg problems and their fatigue. Unfortunately, not all physicians have been able to make that same connection.
No link with carbon dioxide or oxygen in the blood has been made with RLS.
Date: Wed, 29 Oct 1997 18:47:07 +0000
Subject: restless leg syndrome
Just discovered your page and really appreciate the information. Have had RLS and PLM all of my life but only diagnosed about 10 years ago. Have found that identification of food and chemical allergies, and avoidance of as many of these allergies as possible, has helped. (No question that, when I encounter petrochemicals in a big way I have a very bad night, for instance.) Have not seen anything about allergies and RLS but I offer that from my own experience. (Still have to use Klonopin and small amount of Ambien, but hold my own pretty well unless I hit an allergy spike.)
If it is possible to be put on any list, would like to know how to be included. Just learning how to use the web so may have missed the information on your site. Again, thanks for getting information out for all of us with this wretched condition.
Medical Reply
Thanks for your letter. Foods and chemicals have been known to trigger RLS, but the mechanism is likely not allergic (although, we can not say for sure, as we do not really know the mechanism of how RLS is made worse by anything).
Generally, Ambien and Klonopin should not be taken together as they act on the same receptors. We will usually keep our RLS patients on only one type of sedative (Ambien is preferred over Klonopin, see our Treatment page).
Date: Thu, 30 Oct 1997 19:30:43 -0700
Subject: Message from Internet
You had asked me earlier for an update on my experience with getting on Mirapex and off Sinemet. Not much of any significance to report at this point. But thought I would write anyway since Mirapex is so new maybe the routine becomes a little significant. I'm approaching the end of a 3 week period in which I simply take 1 mg of Mirapex 3 times a day.
No big effort called for by my doctor to reduce the Sinemet. His instruction to me are: "At the end of this three week period continue at 1 mg 3 times a day but starting now work at reducing the Sinemet." I was puzzled by this thinking why not start trying to reduce the Sinemet immediately. So I wrote him and posed the question. His reply came today and I will give you his answer verbatim: "I have found in the past that reducing the dosage of Sinemet is better tolerated if is done at three-week intervals. Thus, you get a three week rest between Sinemet withdrawals so that they may be tolerated easier. There would be nothing wrong with coming off all the Sinemet at once if a person could tolerate it, but in my experience, this has been rather nasty for patients with RLS to do." So there you have it.
I have already started to reduce the Sinemet and have found it to be about as much fun as cleaning the oven. Part of the reduction of Sinemet is a piece of cake; ie, if I've got some Mirapex flowing through my body, obviously I don't need the Sinemet. While 3 mg of Mirapex a day may some day take care of the RLS pain (although I doubt it) it doesn't even come close to taking care of the rebound. (Gee, I'm so proud of myself for learning a new word).
So sounds like I'm in for some discomfort but like to believe lt will be worth it. As an aside, for what it's worth, am getting less sleep now than at any time since RLS first entered my life. One or two hours at most of restless sleep at night and a half hour or hour nap in the afternoon, also very restless.
Will contact you when/if anything to report.
Wray S.
Date: Fri, 31 Oct 1997 18:00:24 -0500 (EST)
Subject: Unlisted Benzodiazepines
Hello, I have written before and to briefly tell you my story I have CFIDS and RLS and PLMD. I have been taking Klonopin with some success. Then I started noticing that at around 4 a.m. in the morning, I would awake with excruciating pain in my back. This went on for weeks and I was getting little or no restful sleep. I did discover that at about 4 a.m., I am in my dreaming state.
My doctor prescribed Baclofen for the muscle pain and stiffness, but it made me too fatigued in the day time and did nothing for my back pain. He then prescribed an additional benzodiazepine called Tranzene SD. I now take three 11.25 mgm a night and it seems to alleviate 75% -100% of my back pain depending on the night.
I do not see Tranzene SD listed anywhere in your list of benzodiazepines . Is it a new drug or why haven't you listed it? I appreciate any help you can give. It seems to help me.
Thanks,
Rudy
Medical Reply
Tranxene is one of the few benzodiazepines that I left out. It has been
around for 10-15 years, but is used more as an anti-anxiety agent. It is not used much for
sleep disorders, which is why I did not include it. It may be as good as some of my second
choice benzodiazepines, but as there are so many in that class, I never use it for sleep
disorders.
The SD form of Trazene is the slow release, 24 hour preparation of the medication. The
concern with this long acting sedative in RLS, is that it has a significant potention for
daytime sleepiness.
Date: Sat, 1 Nov 97 08:02:02 UT
Subject: Vicodin and RLS
Hi! I have severe RLS diagnosed in 1991. I to was put on a soup kitchen of medications until the doctors finally listened to me...I always slept well when being treated for a severe back spasms. The key ingredient...Vicodin. The difficulty as you all know is the typical physician paranoia about prescribing the medication. I have been fortunate to have a personal physician that is also an oncologist. He is a firm believer in making his patients comfortable and does not hesitate to do so. Even though I am not a cancer patient he medicates me to reach the desired effect...sleep.
This means 4 - 5mg Vicodin taken at bedtime. He is very comfortable with the amount of medication I am on as he knows through many years of clinical experience that that amount will NOT lead to addiction. I have no side effects nor do I have any sign of withdrawal when I stop taking the medication for any length of time except for the return of the RLS.
If you read through all of these RANDOM letters you will also note an underlying them that Vicodin works accompanied with comments about physician paranoia. I wish there was a resource out there that could be accessed easily for the relief of all of the RLS suffering. The non-sufferers will never understand the extreme nightmare of this Syndrome. It just really bugs me that there is a simple remedy for it yet it is ignored.
How many sufferers have committed suicide because of physician ignorance and paranoia. I know...I am a medical professional that used to think the same way. If anyone out there knows of a physician resource or even a non physician resource interested in becoming a clearing house for this simple treatment it would be great if you posted the information for all to see.
Good luck to all my fellow sufferers!
Bill
Medical Reply
There is a resource on the web that does exactly what you want ... our web
site. We already have Vicodin listed in our Treatment Section and have touted its
benefits. We also mention that although addiction can be a concern, in most RLS patients
this is not a problem if administered correctly.
I use Vicodin on many of my patients with a great deal of success, but it does not work on
every RLS patient (and many have bad side effects with the narcotic class of drugs).
I have had only a few patients addicted to the narcotics, but this is usually easily found
out and treated. The patients who take Vicodin once a day will rarely get addicted.
This tends to happen only in patients who are using RLS throughout the day for relief.
Date: Sat, 01 Nov 1997 18:09:33 -0800
Subject: Newcomer to RLS pages
Hello: I am Bob in Las Vegas, and I am a RLS sufferer. I have had this for years (15 or so), and have yet to find anything that will act as a permanent treatment. I have taken anything from Prozac (the best thing my doctor has found, to date) to Lortab 7.5.
I had arthroscopic surgery last week for a damaged knee and have been hoping that the surgery would have some affect on my legs. After a week, nothing! I am looking for something that I can recommend to my doctor for help.
This is very bad for me, and I must find treatment. Could you e-mail back to let me know if there is hope. I printed your page but haven't read the file yet. Hopefully, there is help.
Thanks
Bob P.
Medical Reply
Read our Treatment Page carefully, and discuss it with your doctor. Most RLS sufferers can get good relief with proper treatment. Most everything that may help you is on that Treatment Page.
Subject: RLS
Date: 97-11-04 23:26:00 EST
Hi, I saw a nurse assistant today and he said that I may have RLS. I am a 47 year old female who has been experiencing leg pain for some 5 months now. It is always in the evening, at bedtime and it usually feels like electric shocks going up my leg and usually more in my left than my right. Presently, my left leg has a dull pain during the day at different times.
My husband asked me to sleep in the other room the other night because I was moving around so much. My question- how young can you get RLS and can it be determined by a blood test. They did draw blood today to check my calcium, potassium and magnesium counts.
I also understand that pre-menopausal women can have leg cramps. Any chance of that instead? Thanks for reading this and any info would be helpful.
Medical Reply
It sounds as if you have RLS. There is no blood test for RLS, but some
patients may have iron deficiency or other deficiencies (see our web page on the Treatment
Page).
The calcium, potassium and magnesium levels generally have no influence on RLS, although
there is some new evidence about magnesium (see our web page).
There is little known of any association of RLS with the menstrual cycle, although
pregnancy has a very significant increase in RLS. Leg cramps are very different than RLS
(leg cramps generally last only minutes and occur only in one limb).
Date: Wed, 5 Nov 1997 03:26:47 -0500 (EST)
Subject: RLS gone
Hi, I am a kidney patient who had problem with the RLS. I just had a transplant and the RLS was gone the first night after the transplant. This definitely explained that toxin in the blood is one of the causes for RLS.
Medical Reply
Thanks for your letter. Glad to hear that you have finally resolved your RLS. It is presumed that toxins do cause the RLS in dialysis patients, but unfortunately we do not know which ones.
Date: Wed, 5 Nov 1997 10:58:35 -0500 (EST)
Subject: RLS AND HEADACHES
Thanks for your recent reply to me regarding RLS.
I have a question, I have had RLS for about five years and also have headaches daily during this time period. Do you know if any studies have been done regarding RLS and headaches being related. My headaches are not migraines and they are in different parts of the head on different days. But without fail I have these headaches daily and thought maybe there was some kind of info relating the two...RLS & HEADACHES.
Thanks for any help.
Barry K.
Medical Reply
To the best of our knowledge, there is no relationship between RLS and headaches. Your description of headaches sounds as if it as common (tension) type of headache which is a very frequent problem. The occurrence of this headache with RLS is likely just coincidence, however I will post this note on our web page to see if others have shared your problem.
Date: Wed, 05 Nov 1997 17:17:52 -0800
Subject: RLS -response from new party to web site
I am so excited that I have found your site. I have not had any problem getting my doctor(s) to listen, however, there are apparently any number of better choices than we have made in treating me, to date. I have never found any one drug or medication that helped my RLS, except one. That was Prozac; the RLS stopped "instantly" (with side benefit of weight lose +/- 30 pounds) from that day forward. It provided the relief that I so desperately wanted, but for only a year or so (prescribed in early 1989), then began a resistance to this.
The only other thing has been Lortab 7.5, which I still take. I don't like using this option, as it is definitely addicting. I want to make some changes before any addiction starts. I will forward all the information I have taken on to my doctor. He will hopefully take the time to read it. I hate to mention this, but I have not as yet found any letter that touched on this issue.
One thing that gives immediate, but very temporary, relief: sexual orgasm. Has anyone found this to be true? What a side effect! I look forward to many more bits of very useful information.
Thanks
Bob in Las Vegas
Medical Reply
You have a valid concern about the Lortab addiction, depending on how you are taking it and if you have been doing drug holidays. A good choice of medication to try may be Ultram, which is not a narcotic but may work as well as Lortab. You can even alternate the two drugs.
Permax may also be a good choice to try as a maintenance drug for RLS. Discuss this with your doctor.
We have some reports of sexual orgasm actually worsening RLS, so clearly there is no good explanation as to what may be happening with this phenomena.
A Reply from Bob
Date: Thu, 06 Nov 1997 10:29:51 -0800
Subject: Re: RLS -response from new party to web site
Thank you so much for your prompt reply to my e-mail. I have a number of things going on in my life, and one at the head of the list is to put this RLS into a controllable state. I am getting married soon, and as you may know, this can be hard on a spouse or significant other. She hasn't been exposed to this as long as I, and doesn't understand why it is difficult for me to go to bed with her at bedtime. While she is very understanding of the symptoms, I don't want to push the envelope any further than I have to.
You suggested Ultram in place of the Lortab. I don't have any information on this product, but will go to Mayo's web site and run it through their search engine for additional details on it. Wouldn't it be better to start with the most widely accepted medications, such as Xanax, Ambien or Klonopin first, and cut the Lortab off completely? Even a combination including the Ultram until the Lortab is weaned from my system.
My doctor has been real supportive of my efforts to get a grip on this. I plan to put together a package on the information I pulled from the web for him. Then ask for him to prescribe the logical choices. I think a recommendation from anyone with a working, long term, history with RLS, would go a long way.
Again, thanks for your reply. Any more information would be appreciated.
Bob P.
Medical Reply
If you need more information on Lortab, then you can also check on our Treatment section page, it contains about as much detail on the drug as you will find anywhere else.
The sedatives (Ambien, Xanax and Klonopin) are very good RLS medications which we do very often use first before trying other drugs. They are generally only useful at bedtime as they can obviously cause significant daytime sleepiness. If your problem is only at bedtime, then it would be worthwhile considering a change to one of the sedatives, alone, at bedtime.
Copy our Treatment Page, and use that (in addition to any other information that you have gotten on the web) and discuss the choices with you doctor.
Date: Thu, 06 Nov 1997 14:59:18 -0400
Subject: PLMD
Dear friends in California, I've been diagnosed with PLMD and I'd dearly like to ask somebody a few questions about my treatment. My doctor is a neurologist, and she's awfully nice. But sometimes I just want to cry because I can't seem to communicate with her. Maybe she's doing everything exactly right and just can't explain it to me. So I thought I'd see if anybody out there in California could help me.
I'm really sick with this PLMD. My sleep at night is often of such poor quality that I'm reduced to a zombie during the daytime hours. Without any meds, I can easily sleep 16 hours out of 24. The disorder has been long standing--say 15 years--and is getting progressively worse. I can no longer work or go to school and am usually left rattling around the empty house all day.
I'm taking bromocriptine, which truly helps. I started out at 0.625 mg per day (I cut the smallest pill into quarters). But after about two lovely weeks, I developed tolerance to the drug and we had to increase the dose. We've increased the dose now about a dozen times, with only periodic spells of wakefulness. Currently I'm taking 11.25 mg/day. (Yes, I'm still chopping the pills into pieces.) My doctor really wants to stick with the bromocriptine until we've given it EVERY possible opportunity to work. She feels that the other Parkinson's drugs have greater potential problems than the bromocriptine. (And she won't even consider the opioids.)
Is this the usual procedure? I've been stumbling around the house for months and months waiting for the bromocriptine to work again, and I'm really, really discouraged. I don't believe there's any way I can tell my doctor what it's like to just sit at home waiting. Often, I'm so tired that I can't even read. How many people go to the doctor and then have to wait a year for the medicine to work?
Thank you kindly.
Mike
Medical Reply
There is no "usual procedure" for treating PLMD and RLS. You may find many different treatments plans even amongst the doctors who are RLS specialists. Treating RLS is only part science, and mostly art.
Most of use who treat RLS do not have much problem prescribing opiods for RLS. These drugs tend to work well, although the Parkinson's drugs and sedatives are the first ones that most of us try first, before instituting opiods. You may want to discuss adding a sedative (such as Ambien or Xanax) at bedtime so that you can get a good night of sleep.
Although there are several RLS experts who like to use bromocriptine for RLS, most will use Permax or Sinemet (only in low dose as Sinemet does have problems with higher doses). Another new Parkinson's disease medication is Mirapex which may do well for RLS, but there is not as much experience with this new drug in RLS.
You should not have to wait a year for results with your RLS treatment. Although a slow cautious approach in treating any non life-threatening disease is advisable, most RLS patients can be can get good relief within several weeks of starting treatment.
A Reply from Mike
Date: Fri, 07 Nov 1997 10:31:14 -0400
Subject: Re: PLMD
Thank you, thank you.
Much of your note was what I was hoping to hear, and I'm a little startled to think that the right drug could wake up in a matter of weeks. (I'd long since accepted the idea that PLMD is a difficult illness to treat and that not everybody can expect to get better.)
I have to stay with my current doctor, as I'm really broke and can't afford any more "Initial Visit" fees. I'm a patient at the National Institutes of Health, which is free; maybe I was accepted because my PLMD was especially bad. My doctor at the NIH is a scientist doing research (epilepsy), and I'm guessing she'd like to limit the variables by prescribing one drug at a time and then watching it very carefully. Maybe you could help me with some suggestions with which I could give my doctor a nudge in the right direction? (When I've gotten fretful in the past, my doctor has offered to try another drug, if only to keep me thinking positive, but I've never been sure what to say about that.)
The big sticking point right now is the bromocriptine. My doctor wants to stay with it until we're certain that it doesn't work for me at any dose. (This means about another 14 weeks of dosage trials.) The bromocriptine DOES help me, even when I'm just poking around the house. Without the drug, I'm reduced to a zombie-like state during which I spend most of the day in bed. The zombie state can get so bad that I have difficulty forming sentences, my memory wavers, and I become so fatigued that I have to hold on to the rail when climbing the stairs. Compared to the zombie state, the just-poking-around-the-house condition is a big improvement. (We recently increased the dose of bromocriptine; that's why I'm able to write this e-mail. But, as before, the effects are beginning to fade.)
So here's the big question: Given that I've repeatedly become tolerant of the bromocriptine after a few weeks of full wakefulness, is there reason to suspect that I might finally reach a higher dose at which I no longer develop tolerance? It seems really unlikely to me, but what do I know?
If my doctor and I finally agree that the bromocriptine isn't a good medicine for me, which drug should we try next, the Sinemet or the Permax? I thought the Permax was very similar to bromocriptine, so maybe the Sinemet would be a better bet. Also, if we add a bit of sedative such as Ambien, should we do it while working with the bromocriptine, or should we wait until the tolerance problem has been resolved?
Mark, I'm concerned that I'm making a nuisance of myself with all of these questions, and I know that doctors hate it when patients try to doctor themselves. But over the last 15 years I've spent myself into a terrific hole consulting doctors, and--hey--I'm worse than ever. I don't blame the doctors for this, but I accept that medicine can't help everybody.
Thank you again
Mike
Medical Reply
Since you are not in a clinical study testing the effect of bromocriptine, there is no reason for you to stick on this one medication either alone or in combination with other medications. You are probably right that you will never respond to bromocriptine, but only a full trial of the drug can decide whether the drug will ever work.
My suggestion would be to discuss with your doctor about starting Xanax or Ambien immediately at bedtime. With a good night of sleep you may be more able to tolerate the lack of effectiveness of bromocriptine Although Permax is closer in action to bromocriptine (both are dopamine agonists), it often may work much differently in individuals (better or worse). Sinemet is a good drug for mild cases, but causes problems with rebound and augmentation with higher doses (see our web site for more discussion on this topic).
I do not know your arrangements with the NIH for your health care, but remember this, doctors are here to serve you and make you better. You should not worry about making a nuisance by asking your doctor questions. Their job is to educate you by answering all your questions so that you understand what they are doing to help you and why they are doing it. The days of patients mutely following doctors orders are thankfully long past. Your treatment plan should be discussed at length with your doctor and you should leave from your visit with your doctor knowing that you are getting the best treatment possible.
Another Reply from Mike
Date: Sun, 09 Nov 1997 07:53:56 -0400
Subject: Re: PLMD
Hello again! Your answers to my e-mail questions were great--they're worth gold to me, and I genuinely appreciate your taking the time to write them all down for me. (And you may be sure that I'll keep reading the Southern California listing of drugs and treatment protocols; I even keep a hard copy for ready reference.) And, blessedly, I'm inclined to trust what you say. My job now is to figure out how I can best pass the info on to my own doctor for her consideration.
I'd like to be sure that I don't leave you with the idea that I think my NIH doctors are not up to par. I'm frustrated because almost nobody understands that PLMD can be serious, miserable disorder. I have NEVER met a medical professional who acted as if PLMD were much more serious than a bad head cold. (And, yes, I need for somebody--anybody--to act as if he or she knew that I was really sick.) Most of the doctors I saw before coming to the NIH would look at me as if I were a major hypochondriac. I've been given some ten different diagnoses over the years--most of them psychiatric--and I've had my blood tested 'till I ran out of blood to test. I've seen different psychiatrists and internists and neurologists over and over and over. Before coming to the NIH, I read one doctor's notes in my chart who wrote that I was "freaking out" because I was getting sick again. (Yes, that was actually entered into the medical records.) Another time, a frustrated internist asked me, "Mike, are you sure you're not just a little depressed?"
Frankly, I don't think I'll ever really trust doctors again the way I used to. They do what they can, but when confronted with something they don't know about, well, they're just guessing. I don't hold that against them, though; I understand the utility of the "educated guess." I only wish that medicine came with a money-back guarantee. That sounds silly, but during the last ten years I've sold my house and even my car (!) to pay for medical bills, and I'm still in debt. It's fine to talk about doctors wanting to "serve" me, but--hey--I can't afford to buy any more of that service. My being accepted at the NIH (at no cost) was truly a blessing. Now, if I can just hurry my doctors along, . . .
But enough of all that. Thank you again for your help. The prospect that I might get well in a matter of weeks seems a little unreal, but it sure is encouraging.
Bye. --Mike
Medical Reply
Your story is a little more extreme than most RLS sufferers, but otherwise not too different. It is difficult for doctors when they do not know what is wrong with their patients, and unfortunately most do not know much about RLS. RLS can be very serious and even life threatening, as you can read in our letters and medical replies.
Even the NIH doctors who are giving you free service are there to serve you, and should be able to get you better at a faster pace than you have experienced so far.
Date: Thu, 06 Nov 1997 16:07:25 -0600
Subject: RLS medications
I was diagnosed as having RLS by my doctor, and he prescribed Mirapex for treatment. The dosage amount was .125mg, taken once a day. I recently stopped taking the medication, about 2 days ago, and have not had any problems falling to sleep.
My only problem is, waking up in the middle of the night and being drowsy in the mornings. I'm hoping that this condition was only temporary, since I've had it throughout most of my life, usually only lasting a single night. The thought of taking medication, for the rest of my life, does not hold any appeal to me.
The point to this, I was surprised not to see any mention of Mirapex, in the drugs which you have listed for treatment of RLS.
Medical Reply
Mirapex is the newest drug available for the treatment of RLS. It has just recently been released for the treatment of Parkinson's disease ( and thus has been conscripted for use in RLS).
It is, however, already listed and discussed on our web site on the RLS Treatment Page in the Parkinson's disease drug section.
RLS is a life long disorder for most patients. It can sometimes go away for good, but generally it may come and go, but not disappear for good. Most patients with severe RLS are obliged to take drugs for life in order to get relief from the RLS symptoms.
Date: Sat, 8 Nov 1997 01:58:25 +1100
Subject: No longer alone
I can`t believe what I am seeing. I am now drowsy but awake at about 2:00 in the morning because I could not sleep as usual. At my endeavour to move my "restless legs" I thought I would get on the net. For something to do I entered the words restless legs and am now totally amazed that there is a medical condition which supports what my DAMNED legs have been doing for years. Wow.
Now I am awake and eagerly searching for info on this subject and there is tons of it.
I would love to hear from others on how to help "rls" I am very hesitant to take a drug to combat the problem, what else is there?
Goodnight all.
Medical Reply
Most of what you need to know is on our web site. You can read our letters from RLS sufferers (like you) to see what works for them. There are seven pages of letters, many of them describing non drug treatments.
Some patients will do well with non drug treatments, but moderate to severe RLS will generally require medication. Check out our Treatment Page for all the possible drugs available for RLS.
Date: Sat, 08 Nov 1997 23:20:55 -0600
Subject: RLS
My mother has had nervous disorders of one kind or another for years. She has been on Mellaril for years and now has RLS type symptoms. Could this be the cause? I have been diagnosed with RLS and take Parlodel(bromocriptine).
Thanks.
Deborah R.
Medical Reply
50% of the the RLS sufferers have the familial type, which is passed on genetically. It sounds as if your family has this genetic problem. That may be the real cause of your mother's RLS problem, but the Mellaril has a potential for worsening or bringing out RLS, as do all the anti-depressant medications.
Date: Sun, 9 Nov 1997 03:15:59 -0500 (EST)
Subject: restless legs
I am 62 years old. For the past 20 years, I have had touches of it, but like everyone else who ever mentioned it to a doctor, it was brushed under the table and nothing came of it. Over the years, and especially in the last five years, it has gotten worse. My mother died in 1992, and with growing blood pressure problems and nerves on edge, the symptoms got worse. They might have anyway, but who knows.
My Dad had the restless legs too. And I saw him suffer with them , and cramping until the day he died, never dreaming I would be like that.
About 6 months ago I went to a sleep therapist, and after filling out an 8 page questionnaire, he realized that I didn't need to sleep over, he knew my problem. RLS. He prescribed Sinemet 25/100 and also 50/200 CR. To be taken at the same time at night. Along with this he gave me Klonopin to alternate with Restoril. The idea was to not get too used to the later two. I had lost so much sleep at that point, that I felt like I was going crazy.
Since then, I have seen him twice, and he admitted that the Sinemet would make the legs worse. At that point, I wanted to somehow diminish the dosage, and get all of them. Now I am at a "Catch 22" situation. If I take the Sinemet, which works fine, I am setting myself up for misery down the line. If a wean myself off of them, my alternative right now, is Klonopin and Restoril, both possible addictive drugs. It reminds me of a joke of a woman who had cancer, and they didn't want to give her morphine, because they were afraid that she would become addicted. OH ME!
So at this point, when I go back to my doctor, I'm going to suggest two other drugs, Vicodin, and Neurontin. I'll see what he says about them, in conjunction with something else that I'm taking. I want to thank you for this web site. I will be reading and watching for any NEW idea that is out there for this unsettling ailment. I sure don't feel alone with this. I'll be back with an update, I hope.
Doreen M.
Medical Reply
Sinemet is a good drug for RLS and will not make the problem worse unless the dose is greater than 3 of the 25/100 pills (which is where you are now). If this works well, just stay on this dose and you should be fine. If you need to go higher on Sinemet, you and your doctor should consider Permax (or the newer drug Mirapex) which do not cause problems at higher doses and may be more effective for moderate to severe RLS.
There are addiction problems with Klonopin and Restoril, but this can be avoided by taking drug holidays (at least 2 days off the drug every 2 weeks). Generally we do not mix or alternate drugs like Klonopin and Restoril, which are in the same class of medications (both are similar benzodiazepine sedatives).
If the above treatments work for you, then you need not consider Vicodin or Neurontin at this point in time.
Good luck.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Click to go to the RLS Homepage, RLS Treatment Page