If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Date: Wednesday, May 27, 1998 8:53 AM
Subject: Another Link
I'm very involved in the RLS email support group. I admit, I haven't looked at your web site thoroughly in several months, so there's a possibility you've already done what I'm about to suggest. But here it is, just in case. Take a look at this URL and see if you'd like to offer it as a link somewhere on your site: http://www.netzone.com/~gunzel/rls.html .
This is a site that I composed, describing my own thinking and response to my RLS. It's basically an alternative approach (no meds involved). After 40 years of RLS, I finally feel in control of it. I can't STOP it from occuring, but I can stop it from stopping ME from whatever I'm doing.
Hope you enjoy the pages.....
Excellent site and I can see that you have put a lot of work into this web page. I will put it on my list of links and recommend it to people who want to see what can be done without medication and to share the experiences of someone who has coped with RLS for many years.
Date: Wednesday, May 27, 1998 8:45 AM
Subject: Severe pain in RLS/PLMD
Hello West Coast! The symptoms that Sheri described are very similar to mine (see April 1,1998). My pain is located in my left hip. I even had an athroscope done because of my limited range of motion and also difficulty walking. Currently, I'm taking 1800 mg of Neurontin-originally it was for pain, but it made it worse, that was when I was taking 2700 + mg.
At the dose I'm taking now, it keeps me from kicking and makes me tired enough to sleep.My neurologist said that it can happen that a lower extremity joint can be affected this way due to the RLS, but my question is why? He didn't know the answer and I'm desperately looking for one.
I'm 36 and this is supposed to get worse with age, I'm already taking morphine for pain, to include Klonopin, baclofen (as necessary ). I am hoping that some one on your end might have an answer, if so, please get back to me
Rachelle in Rhode Island.
RLS does not affect the joints. Your limited range of hip motion is most likely related to another problem, as the RLS should not be responsible for this.
You might want to consider changing the the Klonopin to Xanax or Ambien, which are shorter acting and may cause less daytime sleepiness. You may also want to have a trial of the Parkinson's disease medications (such as Permax).
Date: Wednesday, May 27, 1998 12:16 PM
I have PLMD and Fibromyalgia. I take Neurontin for RLS symptoms. It really helps me sleep more soundly (once I fall asleep!). But the tingling is worse in the evening when I'm trying to relax. And the jerking keeps me from falling asleep. Of course this is driving me nuts. It doesn't seem to matter if I take the Neurontin at dinner time or just before bed, it only works while I'm asleep.
Have tried Permax, Restoril and others with little or no success. Hot bathes only aggravate the symptoms unless I stay in the tub and sleep there. (Which I've done a few times!)
Although you have tried Permax (was it a high enough enough dose??) without success, other Parkinson's disease medications such as Mirapex or Requip may still help you. For falling asleep, the benzodiazepines usually work well. Restoril did not work, but Xanax, Ambien and others are often successful.
There are no other medications that help the PLMD (leg jerks). The RLS can be helped by the narcotic pain killers if necessary.
Date: Wednesday, May 27, 1998 9:20 PM
Subject: seasonal affliction
I am 29 and have been afflicted with RLS for several years, although I only sought treatment last year. It finally got so bad, or I got so fed up with it, that I went to see my dr, who correctly diagnosed the problem. After unsuccessfully trying Xanax, I moved to Hydrocodone (Vicodin) with consistently good results.
All that said, what seems strange to me and my doctor is that I only suffer RLS for about 6 months out of the year - from about mid April to about mid October. During this time, it is consistently pretty bad, but during the other six months, I might experience it only maybe 3 or 4 times. We have speculated on why this might be, but it is all just that - speculation. Is there any other documentation or reports on any kind of seasonal fluctuations in severity?
Many RLS sufferers do have a waxing and waning course. Generally, the worsening and improvements are random and hard to predict. I have not heard yet of a consistent seasonal RLS variation. I will post this on our web site and see if we can find others who may share this interesting RLS variant.
Date: Thursday, May 28, 1998 8:31 PM
I got a call from a friend who has no access to a computer, requesting me to ask you about a drug holiday. She has been on Ambien for sometime which has stopped working. She took a drug holiday for two days and returned to Ambien, which is a working slightly better now.
She was previously on Halcion for a long duration which was effective, but her doctor changed the treatment because he liked Ambien better. She wants to know if she can take Halcion while on the drug holiday from Ambien. Her doctor knows nothing about RLS (what else is new?) despite the info she took him from your RLS book. I told her I would call her upon hearing from you.
Ambien supposedly does not have a tolerance problem. I still recommend drug holidays of at least 2 days every two weeks for this and all the related benzodiazepines. Once tolerance becomes a problem, I recommend a week off the pills, then back to the routine of a 2 day drug holiday every 2 weeks.
Many patients do use a benzodiazepine (such as Halcion) for a drug holiday from Ambien, or vice versa, they use Ambien for the 2 day drug holiday from their benzodiazepine. This seems to work for many, but as Ambien does act on one of the 3 benzodiazepine receptors (Halcion and others act on all three), there could be problems in selected patients. That is why I recommend no sedatives at all for the 2 day drug holiday, if the RLS patient can tolerate it (some cannot, so they must resort to something).
Date: Thursday, May 28, 1998 5:04 AM
Subject: RE: RLS
I was very happy to find your website and I have learned a lot. I have had this condition since I was 7 or 8 years old. It sort of went away for a number of years when I was in my teens but came back strong when I was in my late 20's. I am 44 now and am still dealing with it nightly.
One thing that I was surprised by when reading the info on your site, was that there was no mention of any relationship between RLS and sugar. For many years that has been one of the only things about this disease that I was sure about. I have to be very careful when traveling by plane or car to monitor my intake of sugar. If not, I will usually get symptoms within an hour of eating the sugar. Even just eating the desert on a plane flight of more than 4 hours or so can be a big mistake which I regret.
As a kid I kind of thought that RLS (though I didn't know it had a name) might be some over-abundance of energy that needed to be burned off and that was why it helped if I got up and exercised during the night. As a child I used to lie in bed every night and rock my head back and forth to a rhythm and sing until I fell asleep. Funny how it seems that symptoms in the legs can be temporarily relieved by moving some other part of the body. These day I am doing 50 to 150 pushups per night which seems to help.
Is there any data about sugar and RLS? Maybe mine is an isolated case but it wouldn't surprise me at all to find that there are others who notice that sugar is a catalyst.
Thank you for your work.
We have heard others who have noted that high sugar foods can trigger their RLS, but these patients are in the minority. Ice cream seems to trigger RLS in another subgroup of RLS sufferers. Many patients have noted other foods or items that seem to trigger RLS in isolated cases. There is no medical explanation for this association of foods with RLS
Date: Thursday, May 28, 1998 12:14 AM
I am a 53 year old female. I have had RLS since I was 16. At that time, the doctor prescribed Librium to try and stop the sensations. I have described this over the years as "bugs crawling in the marrow of my bones" for lack of a better description. Pregnancy made it almost unbearable. I have had times where it has not bothered me much but the last 8-10 years have had times when it has about driven me to the point of no return.
I also have Fibromyalgia and have been through so many surgeries for ulnar nerve transpositions, knee arthroscopy and have back problems which were worsened by a car accident last July that I don't know for sure what problem is worse or causing what reaction. In other words, A total state of confusion.!!
My family physician has treated me for this periodically, originally telling me to take Benadryl. No help at all. He then prescribed Klonopin which I don't feel has really helped me at all. I have also been through all of the anti-inflamatories, many of the anti-depressants and don't feel that they have particularly helped. I have asked about a referral to a Sleep Clinic and been advised that I don't need it. (My husband tells me I also have sleep apnea) The only thing that I have found that will work is a muscle relaxant and then I have to be at the point that I am ready to pass out before I dare go to bed. Most of the time I sleep for 2-3 hours and then I am up and taking more pills. Occasionally, a Tylenol #3 will also help, if the legs are also painful. (These have been prescribed for my back pain and muscle spasms caused by damaged discs.)
I get the restlessness in both legs but more in the left one which is the one I had surgery on. I also get it in my arms. There are many time where I feel that I am crawling right out of my skin. The restlessness has varied over time from the crawling, to pins and needles, to aching half cramps and a feeling that I can actually feel the muscles atrophying.
I have always been a night person more than a day person but this is getting ridiculous. More and more, it is 4-6 am before I can go to sleep. I am not working at this time but at this rate I could never even hold a job. I previously was self employed for 18 years, fortunately, with many good employees that could run things if I wasn't there..
Any suggestions? Can I call a sleep clinic on my own or do I need a referral? I am about at the end of my rope with frustration. So is my husband.
It sounds as if your major sleep problem is RLS, and you do not need a sleep study to decide on how to treat this condition. A sleep study would be necessary to assess whether or not you have sleep apnea and if it needs to be treated, but your physician should be able to decide whether or not sleep apnea is a likely consideration.
It may be helpful to see a sleep specialist to treat your RLS, as treatment can sometimes be tricky, but many physicians can treat you with the aid of our RLS Treatment Page. drugs such as the Parkinson's disease (Permax) or the pain killers (Vicodin, Codeine, etc.) may give you excellent relief. Most RLS sufferers can achieve good control of their RLS symptoms with proper treatment.
Date: Friday, May 29, 1998 10:15 PM
Subject: Restless leg in Iowa
I am a white, male, age 66, and retired. I am otherwise in good health.
Four years ago I was diagnosed as having restless legs. Initially, the neurologist put me on Sinemet CR . Over time the dosage was increased to 50/200 CR twice a day. Then the beneficial effect wore off, and Permax was added. They did a fine job controlling restless leg, but I began developing urinary frequency problems. Initially, it was thought to be urological. I was up as often as 12 times a night with the urge to urinate, although near morning all I could produce was a teaspoon full. After 9 months with the urologist, my GP discovered it was the Permax/Sinemet combination. I stopped Permax/Sinemet. My urinary problems cleared up in 48 hours or less.
But the restless leg is back with a vengeance. I have gone to four neurologists in Iowa. None of them seem to know anything besides Sinemet. One did put me on Neurontin 300 mg, but the arthralgia (pain in my hips) it caused was worse than the restless leg. I have also tried Norflex, Mirapex, Sinemet plus Tasmar, and quinine. Tried St. John's Wort. None have done much good.
Right now I am on a Roxicet/Oxycontin combination. Two roxicet at bedtime and one Oxycontin; an Oxycontin during the day time, some times supplemented with Klonopin and/Librium, if needed. They don't always work. Tonight for example, nothing has worked.
Do you know of any neurologists in Iowa who know anything at all about restless leg and who are willing to prescribe something besides Sinemet? And what could I possibly have besides restless leg. I have had deep vein thrombosis checked -- I'm normal there. But, if the usual restless leg medication doesn't work, is it reasonable to assume maybe the restless leg diagnosis was incorrect?
Heck, I'd even take a quack if he/she knew what they were doing. Doesn't have to be a neurologist. My GP has been more help than those specialists whose only answer was to prescribe Sinemet.
Yours very truly,
James D. J
You are already on strong narcotic pain killers which is one of the three major classes of RLS medications. Are you taking regular drug holidays (2 days off every two weeks) on these, as if not they may becoming less effective?
You have tried Mirapex instead of Permax without success, but did you go to a high enough dose? Requip is new and similar and maybe helpful as an Parkinson's disease medication if the others fail. Sinemet should only be used at low dose due to augmentation and rebound problems.
The other major class of medications is the sedatives. You do take Klonopin and Librium, but these are not necessarily the best sedative medications. Check out our RLS Treatment Page to see the medications used in this class and others.
The fact that you do not respond completely to the RLS medications does not mean that you have another problem in addition to RLS. It is much more likely that your RLS treatment regimen is not optimal. It does take a lot of delicate work and expertise to fine tune difficult RLS cases. If you need more specialized help in Iowa see below:
Sleep Disorders Center Mary Greeley Medical Center 1111 Duff Avenue Ames, IA 50010 Attn: Selden Spencer, M.D., Director Mark Hislop, RRT 515-239-2353
Sleep Disorders Center The Department of Neurology The University of Iowa Hospitals and Clinics Iowa City, IA 52242 Attn: Mark Eric Dyken, M.D. 319-356-3813 FAX: 319-356-4505 EMAIL: email@example.com
Date: Saturday, May 30, 1998 10:32 AM
Subject: clitoral nerve
This is in response to the woman who experienced clitoral nerve feelings for no apparent reason (i.e. she was not "in the mood"). I too, experienced this for a while to the point of the pain/good feeling changing to a bearing down feeling. To make a long story short, I finally had a hysterectomy and learned I had adenomyosis. After the hysterectomy the feelings in the clitoris came back and I was really upset!
Then the clitoral feelings went away and only came back a couple of times when I was on Pamelor. All this time I was on various antidepressants which made the restless legs worse. I did some research and learned that the pudendal nerve radiates from the sacrum area which has been the center of my pain. I am convinced there is a relationship to restless legs, clitoral pain and sacrum pain, dopamine, ADD and SAD.
I am now on Serzone and sleep great but I have stabbing pains in the legs from the back of the thigh to the ankle during the day. I also have some sacrum pain--right under the skin. I have been to all kinds of drs, and have tried various antidepressants, codeine, Xanax, etc. I am now trying tonic water (quinine), per my osteopath's suggestion. I've just started it. Also I am going to try hydrating myself. I have noticed that on sunny days when I get hypomanic my leg pain goes away. I hope all this info helps someone.
I believe this board is so very important. It is like a big research group!
The link between nerve problems and RLS has been noted many time by RLS sufferers, but researchers still have not been able to find out what is going on. This forum for letters is helpful, so that RLS patients all over the world can share their experiences.
Date: Sunday, May 31, 1998 4:45 PM
Firstly, I'd like to commend you on this homepage and thank you for it!
I have a friend in the States who I met on the internet last year, she is 63 and she just told me a month ago that she has RLS. As I am a Natural Therapist specializing in Remedial / Therapeutic / Sports Medicine Massage, Jo Ann thought I would know about it - I do not know very much.
The only thing that comes to mind is throughout the years listening to my mother saying things like - I wish those hundreds of ants crawling under my skin would go away. Mum would walk around and hit her legs, or stretch them, etc., then sit down again. She was obviously frustrated and in great discomfort. I guess you would call this RLS!
Your letters show a lot of people who have family members with RLS. Is it hereditary or acquired?
Also, your letters show a few people who have tried Natural Remedies, and have had great success! In particular, one woman uses Calcium and other vitamins and minerals.
I take this opportunity to advise you that there are other forms of help other than heavy medications/drugs. Can I make a suggestion that you contact the following people:
CHINESE HERBALIST / NATUROPATH / HOMEOPATH
Also, throughout the years of massaging patients, I have found one very important thing - I believe that sensations under/on the skin e.g. crawling, buzzing, moving movements, are occurring because of some NERVE DAMAGE or LACK OF NUTRIENTS to feed the nerves. Has this area been investigated yet. If not, at least I have now planted the seed for someone to look into it!!!
Other information: Calcium helps to fire a muscle (in other words, it's food for the muscle to help it contract) & Magnesium helps to extend a muscle (in other words, it's food for the muscle to help it relax). These two minerals need to be taken together, because if taken separately, one depletes the other.
Now, here is something of importance, if I didn't tell you that you must take Cal & Mag together, you would never have known - this is why it is important to see professional people who can monitor you and adjust your intake of vitamins, minerals, herbs, trace elements & even change your nutrition (eating habits).
For some, it may be a simple nutrition problem, or, an allergy or food intolerance problem, in which case you need to have tests to find these out.
For others, it may be a nerve damage problem, and again you need to have tests to find this out.
And others, may very well need prescription medication to help them get through their day - for those people I suggest this - ask your doctor what the side-affects are and how long you can remain on the drug before it has adverse affects on your body; and will you have to go onto something stronger if this drug ceases working.
I leave you with a thought: If you see your doctor and request they do some tests on you, or you ask them to monitor you whilst you're on calcium/magnesium, and they laugh or turn you down. Remember that you live inside your body, no-one else knows or feels the pain, frustration and anguish that you do. If you cannot receive the help you have asked for THEN FIND A PRACTITIONER WHO WILL LISTEN TO YOU AND HELP YOU!
I wish you all good luck in your trials and investigations and I hope, in some small way, I have given another avenue for you to explore.
It does sound as if you mother had RLS. Yes, it is hereditary, in about 50% of cases.
Many researchers in the RLS field have thought about many of the same possible causes that you have mentioned. It has been very frustrating that there does not seem to be any unifying thread to finding the cause of RLS. What works for one patient will often not work for another.
Another Message from Mary P.
Date: Sunday, May 31, 1998 5:47 PM
Subject: RLS in other parts of anatomy
Can you experience similar sensations in other parts of the body and what would they be called. I have a patient who was suffering from work-related-stress and was on leave for it over a 6 week period who came to me for massage. When I took medical history from her she advised she was experiencing tingling and unusual sensations down her left arm. I of course asked her to see her doctor and chiropractor which she had already done and they had checked her thoroughly and had not found any problems.
I asked her to monitor her nutrition and she advised that when she felt the sensation she would eat an apple and the problem would dissipate.
Could this be another form of RLS but rather RAS?
Your reply would be appreciated.
RLS should probably be called Restless Limb Syndrome. It will often occur in the arms (with or without occurring at the same time in the legs). Some even note muscles involved on the abdominal or chest wall. Whether or not your patient has RLS is difficult to say from the information available.
Date: Sunday, May 31, 1998 5:22 PM
Subject: And you thought you have heard it all! - Urine Therapy
I have used your website to learn about my RLS/PLMD problem which I had for 40 plus years. Of course, I learned the diagnosis for it just couple of years before. I have tried various drugs including Sinemet, Ambien etc. All these drugs worked for just a few days and with some adverse side effects. I tried many other natural remedies as listed on your website. They helped somewhat but didn't really solve the problem. The most effective was using Valerian and/or St. John's Wart. If you want to try it, make sure that you get them in standardized extracts.
What really cured my problem was Urine Therapy (UT). I got the information about UT at Yahoo/ Alternate Therapies/ Urine Therapy. There are a lot of articles at this site about UT. Also several books are available on this subject at Amazon.com. If you are serious about trying UT, please read everything in these articles and/or a book carefully; e. g., you will have to stop all your prescription medicines for at least 3-4 days before you start it.
I realize that this is not an easy decision. I know. It sounds disgusting. But I was so desperate just like many of my fellow sufferers. I was ready to try anything rather than getting up with a headache almost everyday and then be miserable whole day. Many of you know the feelings. Again let me make it clear it took several weeks before I was completely cured. For those of you, who may be interested in trying UT, let me briefly describe what I did.
I started with drinking one oz. of urine the first thing in the morning (between 4 to 6 am). As I got used to it, I incased the quantity to 6 oz. or so. I did this for 7to 8 days. (just once in the morning). Then I did fasting for 3 days with nothing but the urine and the water. Here you are supposed to drink all the urine that comes out. I started on Friday at 5 am and finished on 5 P.M. on Sunday. The books/articles will tell you all details about the precautions for start and finish. After that I continued with my once in the morning (about 6 oz. of urine) routine.
For a few days after fasting I felt I was totally cured. But then there were several ups and downs in next few weeks. But now for a few weeks I am quite O.K. That is why I waited before writing this letter. I think, if I had done another fast of 2-3 days or had done fasting for a week, the complete cure would have been quicker. Every person is different. So the results can vary.
By the way, my high Blood Pressure problem was solved too with this UT. UT can be used for any disease. It means if you have any other problem besides RLS/PLMD, UT will even help there.
Good luck to all of you !
Urine therapy has been recommended for a whole host of problems for hundreds (possibly even thousands) of years. It is however, never been proven scientifically to be effective. Many therapies may work by the placebo effect (sugar pill), which may even help up to 20% of many illnesses. Unless a double blinded valid medical study is done (and repeated by other investigators) showing that a treatment has a proven benefit, then all we can say is that it has worked in anecdotal cases, but not if it will work better than a placebo in the majority. RLS is even more difficult to assess, as far as how effective treatments really are, as individuals can be quite variable in in the way they respond to any treatment.
We will post your treatment with Urine Therapy, but can not endorse it. Others may want to try it, but should do so only at their own risk, as with any other unproven therapy.
Date: Monday, June 01, 1998 9:47 PM
Subject: Seasonal variation
I too, like Erick, have find my RLS worse from late spring to early fall. Permax and Sinemet seem to work during the rest of the year. I noted this seasonal effect over 20 years ago when my RLS first started to become a problem. It was always worse in the summer. I wonder if it isn't some how the opposite of SAD?
I also noted when I have been around the Arctic Circle in the summer time that I have tremendous energy and do not sleep much when the long daylight hours. I am starting to dread summers and I have been having been getting worse over the last month right on schedule.
This internet forum is interesting. Information such as this seasonal effect of RLS might not be gleaned otherwise. Just like with SAD, the length of the day can affect our body's hormones and cause changes in our nervous systems and other organs. We will see if others start responding with similar complaints.
Date: Monday, June 01, 1998 10:28 PM
I'm 43 years old, and have only had RLS for about 3 years. My symptoms occur only at night when I'm trying to fall asleep. I call it a "twitchy" feeling. Usually it's in my left leg on the inside of my knee, but has been at times in both legs and involving the ankles up to the knees. I get this electric kind of feeling, and I absolutely have to twitch my leg. If I fall asleep right away, I'm usually ok. If I have trouble falling asleep, the twitching will set in, and I won't get to sleep until 2 or 3 in the morning. I have no trouble when I nap in the daytime.
I've had a little success with hot baths, which work better later on than before bed. I've used hot-pads on the twitchy spot and have been able to fall asleep that way. Stretches help sometimes. I went to a chiropractor for my neck, and my RLS went away for over 6 months. Later my chiropractor suggested I try taking calcium, but I've had a kidney stone so I didn't want to do that. He suggested magnesium, which I was already taking, so he told me to double the amount. I did, and that worked for a while. I've been taking antihistamines for about 35 years, and haven't noticed that they have any effect. I have not tried any drugs, although my doctor said to try over-the-counter quinine (I could not find any).
I was happy to find your web site, it's just good to know that I'm not all alone with this problem! I first recognized what I had when I read a newspaper article describing the problem.
Mary Lynne B.,
Lahaina, Maui, Hawaii
It does sound like you have mild RLS. In cases such as yours, conservative therapy is generally best. Medication should be reserved for the times that your usual treatment fails. At that point, a bedtime sleeping pill, such as Xanax or Ambien, taken only from time to time, should be quite helpful.
Date: Tuesday, June 02, 1998 6:30 PM
Subject: Serzone aggravating restless legs?
I know many antidepressants can aggravate RLS. Can Serzone also cause symptoms to increase? Also, what is it about the antidepressants that cause the increase in symptoms? Is it the increased serotonin or increased norepinephrine?
I noticed increase in RLS. when on Prozac, but only when I was on it for many months and had increased dosage from 20mg to 40 mg. Is it possible the dehydration is causing an increase in symptoms?
Thanks for any information,
You have asked good questions. Unfortunately, we have almost no understanding of how antidepressants act on RLS. There are patients that are made better and others that are made worse. I have even seen patients who have been at first made better then worse by the same antidepressant.
I have also noted that there may be a dose response effect with antidepressants and RLS. At a critical dose, the RLS suddenly gets triggered, where it may have been well tolerated at lower doses. Serzone is an antidepressant in the same class as Prozac, so side effects can be quite similar, especially with respect to RLS.
Date: Tuesday, June 02, 1998 9:34 PM
Subject: RLS for the last 30 years
I have suffered from RLS off and on for the last 30 years, and almost every night for the last 10. It is definitely worse every single summer - a good night for me from about May to September is 3 hours of sleep ( not 3 hours in a row). I also very definitely have a harder time with my legs at certain times of the month.
My dad used to have the problem but somewhere along the line he got over it - he can't remember when or if he made any changes. Now my daughter has the problem or about a week every month. I am interested in hearing about others who have RLS seasonally and hormonally related.
It really does help to know I'm not alone in this. I never liked the computer until I discovered this information is available. We can spend our nights trying to figure it out, since we're all up anyway.
We are now finding quite a few RLS sufferers who seem to have a seasonal component to their symptoms. It will be interesting to speculate why it is worse in the summer months. On first thought, one would think that the winter months would be worse due to more time spent indoors (and likely at rest) where RLS is generally worse.
We have heard of patients RLS symptoms change with their monthly hormonal variations (menstrual cycles). See other letters for similar complaints.
Date: Wednesday, June 03, 1998 5:57 AM
I just want to thank you for the recent RLS/PLMD Treatment Page. I belong to the Central Iowa RLS Support Group and recently we had a pharmacist talk to us and answer questions re: the different drugs. Yours is much more detailed. It is amazing how much drs still don't know - I am currently taking .05 mg. of Permax (3 at 6:30 p.m. and 3 more at 9:00 p.m.) and have been on this same dose for about 3 years.
Recently it has stopped being as effective in the relief I was able to obtain from this prescription. When I called my local dr, she said she didn't know what the maximum dosage could be for treating RLS since they use Permax mainly for Parkinson's. So I was especially pleased to see what the recommended dosage could be for treatment of RLS - I have an appointment on Monday so I will take this article with me. Physicians still have a lot to learn about treatment, but it is getting better.
Anyway, thank you for listing this on the internet!
Thanks for your email. As you can see from out our RLS Treatment Page, you can go higher on Permax. It may be that your RLS is getting worse and thus needs more medication. There are occasional cases of tolerance occurring to Permax (and other Parkinson's disease medications), in which case a drug holiday would be in order (4-7 days for the initial one, then one weekend off every 2 weeks in the future.
Date: Wednesday, June 03, 1998 9:24 PM
Subject: RLS/PLMD and Numbness
I experience numbness in my toes and fingers when I lie down to go to sleep. Is "numbness" of the toes and fingers a symptom of RLS/PLMD?
Most RLS patients have difficulty describing the unpleasant sensations that cause them to want to move their legs to relieve the problem. Numbness in your toes and fingers without other associated findings likely does not represent RLS.
Date: Thursday, June 04, 1998 8:57 PM
Subject: Seasonal RLS
I just checked out your website again and wanted to add to the mystery of worsening RLS in the summer. From July to mid-October, my RLS is always worse. I have associated this phenomenon not only with higher temperatures, but increasing levels of humidity. When temperatures rise, I can tolerate the RLS to a point, but when combined with a humidity level of 70% or above, I am miserable despite medication.
I have learned to keep my legs and feet as cool as possible at night by using a body lotion (or a non-alcohol facial toner ) on them that has been refrigerated. I also keep my legs and feet outside the covers most of the night. Makes for strange sleeping, but it works for me most of the time. Also makes me dread summers, even in California.
Date: Saturday, June 06, 1998 1:33 PM
Subject: Restless Legs and back problems
I am a 52 year old female and had been diagnosed with RLS and nocturnal myoclonus (PLMD) about 10 years ago. I also have had lower back pain for several years. Stangely enough, when I take Sinemet the pain subsides somewhat. I have had X-rays and MRI and was told that I had just a little osteoarthritis (normal for 52 year old female) and I should not experience pain the way I described it. Is there a relationship between RLS and back pain? The pain in my back gets always worse in the evening.
Thanks for your time reading this and maybe responding.
There may be an association between your back pain and your RLS. RLS can sometimes occur even in the trunk muscles. It is possible that you may have this type of RLS, but it is very hard to determine this even with a thorough examination. You could just have regular back muscular pain that somehow triggers RLS when it is active.
A Reply from Marianne
Date: Sunday, June 07, 1998 2:33 PM
Subject: Re: Restless Legs and back problems
Thanks for responding! I did not know you can have RLS in the trunk muscles. I believe that this is true in my case, because the two are always bothering me at the same time.
Date: Saturday, June 06, 1998 2:49 PM
I have had RLS for several years but it has recently become much worse. My doctor says there is nothing he can prescribe,mentioning there were some strong drugs but he felt these were inappropriate. Am trying to massage with lavender aromatherapy oil which might help, after that will try some homeopathic drugs. My husband is getting fed up of being woken night after night. Any suggestions?
Female aged 49
Your problem with obtaining help from physicians is quite typical of many RLS patients. Most drs do not know much about RLS and are afraid (or do not realize) of using the appropriate drugs which can usually help most RLS sufferers.
Look at our RLS Treatment Page and make a copy for you dr. If he will then not prescribe the appropriate medications which should likely help you, then please see another physician. You can look for an RLS support by checking the RLS Foundation's list of support groups in the United States. The support group members can usually direct you to a doctor knowledgeable in RLS.
Date: Monday, June 08, 1998 9:25 AM
Subject: RLS...........New drugs?
Is there any additional relief out there in addition to Klonopin at bedtime., exercise every day, including recumbent bike/ knee bends/ toe flexes/ leg swings and a warm bath followed by massage with lotion on both legs? I am at my wits end.....this waking up 2 and 3 times every night is terrible. I just saw my neurologist who prescribed the Klonopin (2 weeks ago) and he doesn't seem to think (or has never experienced it!) that it's such a big deal. I watch my diet, avoid caffeine, and ice cream has never bothered me. I never eat past 8 pm and retire about 10-10:30 pm each night.
Help....this is a 'drive-you-nuts" situation. May God help others who have it even worse, accompanied by pain.....which I don't have. Thank you for your Web site.....and any advice/help you can give.
There are lots of other treatments for your RLS. Please check out our RLS Treatment Page. The Parkinson's disease medications such as Permax or Mirapex would likely help you considerably. You could also try the narcotics such as Vicodin, Tylenol with codeine and others for relief.
Please bring your doctor a copy of our RLS Treatment Page so that he can better decide on how to treat you.
Date: Tuesday, June 09, 1998 1:10 AM
I just had a total knee surgery and within 2 months my RLS has worsened considerably, the surgical leg worse that the other leg. Could the nerves being reconnected from the surgery have anything to do with RLS?
I have had RLS once in a great while but now I am sleeping during the day and up all night. My doctor prescribed Sinemet and I have taken the first dose today so I hope it helps. Just reading your web page has helped me immensely.
Thank you for your time and I hope to hear from you soon.
Your experience is quite common. Many patients have noted worsening (or the beginning) of their RLS symptoms weeks or months after orthopedic surgery. There is no medical explanation for this phenomenon, so your idea is as good as anyone else's.
Sinemet will be helpful (if kept at low dose - see our RLS Treatment Page), but if you need treatment at higher doses, Permax or Mirapex would be better choices in the Parkinson's disease medication class.
Date: Tuesday, June 09, 1998 1:31 PM
Subject: drug Holidays
I'd like to ask another couple of question about drug holidays.
I'm on Permax (pergolide). When the efficacy of the drug began to decline about a month ago, I took a drug holiday for 4 days. (The 1st 2 days I felt good, the 3rd I was tired, and the 4th I was really a zombie.) Then I went back on the Permax and reached my full dose after 3 days. The drug holiday seems to have done the trick, and the Permax was once again working for me.
But now, after only about a month, the Permax is losing its kick again. Do you think I'm ready for another drug holiday? Maybe I should note that the Permax worked really well for me for several months before I took the first drug holiday. Maybe I need to take a longer holiday this time?
I'm down to about 4 good hours per day, and your advice would be very welcome.
Thank you kindly, Mike
Permax does have a small percentage of tolerance problems, and unfortunately, you seem to be having one of them. Permax has a rather long half life, so it needs a longer drug holiday than most drugs. 4-5 days would be the minimum drug holiday, and a week to 10 days would likely be the most needed for a complete drug holiday.
If significant tolerance occurs (as in your case), I would recommend the longer drug holiday of 7-10 days. To prevent tolerance from occurring once back to normal, 4-5 days every 2-4 weeks should suffice. Note that there is a lot of individual variation, as we all metabolize drugs at different rates.
You may want to consider a sedative (Ambien or Xanax) or a narcotic medication for the drug holiday nights.
A Reply from Mike
Date: Wednesday, June 10, 1998 1:23 PM
Subject: Re: drug Holidays
Thanks for you on-the-ball reply!
Let's see if I understand what you're telling me: I may benefit from a LONG drug holiday of 7 to 10 days to get myself back on track (get past the current tolerance problem). Then, to minimize the chances of developing tolerance like this in the future, a SHORT drug holiday of 4 to 5 days every 2 to 4 weeks might help. In other words, you're talking about two different uses of the drug holiday. Did I get that right?
You have it exactly right. Once tolerance develops, a long drug free period is needed. To prevent tolerance once "back on track", the shorter drug free period should suffice.
Another Reply from Mike
Date: Friday, June 12, 1998 7:12 PM
Subject: drug Holidays Again
When I'm on a drug holiday from Permax, I have a lot of trouble sleeping well due to the nighttime shuddering. I don't regularly take a sedative to help with the disorder--only Permax. Now I'm wondering if it might make sense to take a sedative just during the drug holidays to help me sleep better while the Permax is leaving my system. (I have no objection to taking a sedative all the time; I just prefer to take as little medicine as I can.)
Do you have any thoughts about that?
Thank you kindly,
Sedatives such as Xanax or Ambien should be very helpful with your drug holidays from Permax. Narcotics such as Vicodin, codeine preparations, and Darvocet may also help your days off of Permax.
Date: Tuesday, June 09, 1998 3:20 PM
Subject: RLS & PLMD
I am a 42 year old woman who was diagnosed through a sleep study with PLMD about 10 years ago. I have been on Sinemet 25/100 CR for several years but the RLS and the sleepiness have not gone away. I feel like a limp dishrag almost every day. My mother also had this problem and was prescribed Ritalin 10 mg/day and has not increased her dosage in 12 years. I guess I should say that my mother's legs cramp often and she takes Quinine but the excessive daytime sleepiness is under control now.
I was given a blood test for Narcolepsy and it came back negative. My mother sees a neurologist but has not been tested for Narcolepsy. My question is, is there a hereditary disorder that would cause someone to not have any physical energy and feel limp and sleepy a lot, that Ritalin is prescribed for?
In the years on Sinemet and now Mirapex, which seems to stop the RLS, still doesn't leave me with any energy. I also take 100 mg. Zoloft/day since this whole problem depresses me a lot. Another thing I've noticed is that a couple of Lortab gives me energy but no euphoria.
Please comment on these things. I am sick and tired of being sick and tired. Every day of my life is spent on conserving my energy in order to work (on my feet) 3 days a week. I've also done aerobics for years but could lay down and sleep 1 hour after exercising.
HELP!!! What is wrong with me and what would you prescribe?
The Sinemet (or Mirapex) seems to be controlling your RLS problems. These medications can control your PLMD (Leg jerking) problem, but in your case we are not sure. If you are still sleepy during the day, then the leg jerks may still be occurring at night and preventing you from getting restful, deep sleep. The only way to make sure would be to have a sleep study while taking your Sinemet.
To rule out Narcolepsy, you would need the above sleep study, followed the next day by an MSLT study (5 naps at 2 hour intervals). This part of the test should be done only if the PLMD problem is not shown to be causing many arousals on the previous night's study. The blood test for Narcolepsy is very helpful, but not absolute and Narcolepsy does have a strong hereditary component. A repeat study would also help rule out sleep apnea, which could also coexist with RLS/PLMD and make you very tired during the daytime.
A Reply from A.R.
Date: Wednesday, June 10, 1998 7:19 PM
Subject: RLS & PLMD
Thanks so much for your quick reply!!! You are a real blessing to those of us who suffer from this strange disorder. Well, I thought that the Mirapex was controlling the RLS but last night I couldn't get to sleep until after 4 A.M. and about two hours after taking the Mirapex the RLS was back again in full force. So I took another one and dosed off an hour or so later. This morning my legs and feet felt like I had been standing on them all night long and continued to bother me all day.
I do not have insurance at the present time and cannot afford another sleep study and MSLT so I was hoping that if I did have sleep apnea I would have to sleep with my mouth open, which I do not do. In fact, when I've had colds and couldn't breathe, I also cannot sleep. Wouldn't I snore and sleep with my mouth open if I had sleep apnea?
Also, I forgot to tell you that sometimes when I am dropping off to sleep, the lower half of my body will literally jump off the bed. Sometimes when this happens I hear a loud noise with this like a gun going off. It must come from inside of me because no one else hears it. Is this also part of PLMD?
Sinemet helped me sleep all through the night instead of waking up 3-4 times but I was still so tired all day. Plus, my RLS was getting so much worse. Since I've been on Mirapex, I don't sleep nearly so well or deeply, and now, I guess, It isn't working so well either. What is the highest dosage I can take of Mirapex and what are it's side effects? My legs are really bothering me tonight.
P.S. I do understand that Mirapex must be built up to slowly as the directions say.
Thank you so much for your help! May God bless.
The body jerks that you have are called hypnic jerks. They occur in people without RLS/PLMD, but likely are worse in RLS sufferers.
It sounds like you do need a higher dose of Mirapex. Most do well on a daily dose of 0.2 - 0.4 mg, but even at twice that dose, you are in the low range of Mirapex therapy (compared to Parkinson's disease patients who use much higher doses).
Sleep apnea does sound less likely but you still may be having many sleep arousals from the PLMD which could make your sleep quality very poor.
Date: Sunday, June 14, 1998 11:49 AM
Subject: RLS and codeine
My wife (40 years old, 172 cm, 45 kg, low blood pressure) is suffering from RLS, like her father. She suffered from headaches and sporadic RLS (without PLMD) starting at the age of 17; chronic and extremely severe day/night RLS (and far less headaches) since the age of 29 preventing her from professional activities till today. She takes dihydrocodeine 25 - 30 mg/evening (25 mg Paracodin retard, Knoll, [seems not to be available in USA] and 2.5 mg supplements of Paracodin normal, when needed during the night) since Spring 1990 until 1997.
Since April 97 until today, the dose had to be increased slowly to 50 - 55 (seldom 60) mg/night to keep control of the RLS. This could be due to worsening of RLS, codeine tolerance, and/or increased enzymatic clearance of the codeine by the liver. No drug holiday was possible due to the severity of the RLS. She tried to switch slowly from codeine to levodopa/benserazid (Madopar) in June 96. The uptake of Madopar was increased and the codeine decreased to obtain the full replacement in two weeks. A worsening of the RLS specially during the day, heart tachycardia obliged her to discontinue the treatment and to come back to codeine.
The heart remains a weak point since this trial, with frequent arrhythmia and tachycardia. Clinical investigations revealed no heart problem, and the clinician proposed to control the heart and decrease the RLS with propanolol (Inderal), thus allowing the replacement of codeine by a dopamine agonist. My wife fears now the dopamine agonists, but would like to change to another drug, since the codeine side effects (nausea, digestion troubles) are now increasing.
I read in your Website that some patients have used codeine for drug holidays from Tramodol (Ultram) and vice versa, because these two drugs have shown no cross tolerance. What do you think about the propanolol/dopamine agonist proposal, and about a change from codeine to Tramodol? In case of a codeine/Tramodol switch, how fast should be the switch?
Your advice would be greatly appreciated.
Your wife obviously has a severe case of RLS. Her increased need for codeine is likely more due to tolerance to the narcotic drug (which occurs especially when the dose is steadily increased and taken regularly without drug holidays) rather than due to worsening of her RLS (which does tend to get slowly worse with age), or the possibility of increased metabolism in the liver (very unlikely). I cannot express enough the need for drug holidays (even when it seems extremely difficult), as once tolerance occurs, the RLS may even get to the point where high doses of narcotics such as codeine will not help.
Ultram has been used for drug holidays from narcotics successfully by many of our patients. There is no study showing that this is the right thing to do, that there is no cross tolerance to narcotics, and that there are no long term problems, but it has worked for many difficult RLS cases that need their narcotic medications on a daily basis. Ultram can be substituted immediately for your wife's codeine. I have not yet seen withdrawal reactions from narcotics when Ultram is substituted, but you should watch for this.
I would suggest that you stay away from the levodopa containing products due to problems with augmentation and tolerance (see Sinemet on our RLS Treatment Page) and consider Permax or Mirapex. If tachycardia does occur, propranolol can be considered, but in general we do not like using an additional drug to control side effects from the treatment drug.
For sleep/bedtime, you should consider sedatives such as Ambien or Xanax for your wife. This should afford her a good night's sleep which should help her a lot. Another drug to try if the above treatment plan does not help, is Neurontin (gabapentin - see our RLS Treatment Page).
Date: Sunday, June 14, 1998 8:12 PM
Subject: Re: RLS?PLMD?
Wow! I was so excited to find this web page that I had to call my husband into the room to show him that I was not the only one who had problems. No one I have spoken to in the past year (including 2 drs) could understand what I was trying to explain to them. My last doctor had even said she didn't think it was RLS (I had just read a short article about it and wanted her opinion).
But now that I have read your page and have learned about PLMD, I feel that this is what I have. She had given me 2 types of muscle relaxers, and an antidepressant (for bed time). They helped for almost 2 months. Now, I am jerking again. When I lay down or sit for a long period of time, my leg jerks so hard I shake the bed. My husband is a sound sleeper (thank goodness).
To add to my problems, I have always been a light sleeper. So I have lost a lot of sleep lately. I also so thought that, due to lack of sleep, I should be able to drop off easier at night? (wrong) I thought maybe I was crazy, why was I just lying there not able to go to sleep? I'm glad to see this in some others comments. Well, I'm sorry to go on and on, it's just that I'm so relieved to see understanding of my symptoms! Thank-you. Now, should I ask my doctor for a referral to a neurologist (?) or a sleep clinic? I will be visiting you again, soon!
Mrs. J. S. in Covington, TX.
Your story is very typical of many of RLS sufferers. It is often very hard to get diagnosed and just as hard to find physicians who can treat you. Many neurologists can treat RLS and PLMD (it certainly sound as if you have PLMD), but sometimes a sleep specialist who understands RLS/PLMD may be necessary (especially for difficult, severe cases). Most RLS/PLMD sufferers can be helped with proper treatment.
Another Reply from Mrs. J. S.
Date: Sunday, June 14, 1998 10:24 PM
Subject: P.S. to RLS?PLMD?
I wrote you earlier this evening. While lying down (trying to sleep), I had so many more questions on my mind that as the jerks began again, I felt I had to get up and write some more. Besides the medications that I mentioned, I also have used Tylenol P.M. (it has seemed to lose it's effectiveness though). Also, I have begun using Metabilife 365 (a diet aid).
Will any of these mess up the other medications? Also I still wonder if I am on the right track because most of my jerking seems to generate in my thighs, whereas the people who write you talk about their calves causing their jerks. I have had a lot of trouble with my calves drawing up in knots at night. When I awaken, the slightest movement would cause a "Charley Horse". This has ceased since taking the muscle relaxers.
At times too, when I wake and try to stand, my legs would not function at first. They felt like they were locked up. I would have to focus on each movement they made for the first few steps, then they would be alright. I want to mention too, about the severe pain I have had up and down my side when lying in bed. I told my doctor it was liken to pressure pains(?). A burning, numbing type of pain.
Thank you for any input you have to offer, and again I feel so relieved to have found this site!!!!!!!!!!!!!!!
Mrs. J. S. from Covington, TX.
Much of what you are describing is associated with the RLS/PLMD. The Tylenol PM and Metabilife (not sure what that is) likely do not have much of an effect on your problems, unless they help you fall asleep so that you cannot be bothered by these problems. Many RLS sufferers complain of discomfort/pain in their calves and their thighs. It is often difficult for them to describe. Many complain about their legs drawing up.
The knots in your legs may be just some muscle spasms that anyone can get at night. These can often be prevented (once they are present they are hard to relieve) by quinine sulfate.
Date: Monday, June 15, 1998 8:48 AM
I suffer from extreme RLS..it seems to be a constant problem..sitting at my desk working, laying or lounging around watching television.. It's at it's worst when I go to bed at night. I have had a tremendous problem convincing my doctor that I truly have these types of symptoms and they are real, not imaginary.
I have tried Klonopin, Xanax and Ambien with little or no results...with the Xanax and Klonopin I am so drugged out the next day that it's not acceptable. I have had tremendous results with hydrocodone (7.5/500) two every 4 hrs....10-12 day. Naturally the doctor is very hesitant to prescribe this amount of narcotic. I am willing to take the risk of addiction. I am able to sleep at night and function very well during the day.
If anyone knows of any doctor in the Central Texas Area (Austin) that recognizes RLS and treats it seriously I would appreciate any names, groups etc...
With the amount of Vicodin ES (hydrocodone 7.5/500) that you are taking, tolerance and addiction is quite likely. You may be willing to risk the addiction, but the real problem is that with the addiction comes tolerance. Tolerance means that the present level of Vicodin ES will not be effective and you will need higher and higher doses which will become less helpful in relieving your RLS symptoms. You may want to consider alternating Ultram with the Vicodin ES (3 or 4 days per week on each drug). Better yet would be drug holidays from both the Ultram and Vicodin ES if possible.
You have not mentioned trying the Parkinson's disease medications such as Permax or Mirapex. These can be very helpful and decreased your need for the narcotic medications.
Check out the local RLS support group as they will likely have a better idea of drs who can help you in Austin.
Austin Support Group
Date: Tuesday, June 16, 1998 7:17 PM
Subject: RLS Medication confusion
Can you please help me? I am currently on Xanax for RLS/PLMD, I started on a very low dose, 1/2 a pill at night. It worked great at first, but now I have had to increase my dose to a full (.25mg) tablet. I am going to see my family doctor next week and would like to get off of Xanax because I am a recovering alcoholic and am afraid of the Xanax because I am building up a tolerance to it.
Ambien was listed as a good choice for RLS and I was thinking of asking my doctor what he thought about that one. My question is this, I found a listing for Ambien on the Psyweb and it seems to be a more dangerous drug as for side effects than Xanax. As we don't have a sleep doctor up here, I am trying to work with my family physician. He is trying to help but doesn't understand very much about this affliction. Any help you could give me would be appreciated. I really don't want to go on the Parkinson's medications yet. Thank you for your help.
Ambien and Xanax can be very helpful and safe for RLS if used properly. Ambien, in fact, may be even safer than Xanax, as it seems not to cause tolerance or dependence (so far). The key to not having trouble is to take drug holidays. Generally, 2 days off the drug (one weekend will usually work well), every two weeks should do the trick.
If you find that despite this you need to increase your dose to get the same effect (as you did with your Xanax), then longer and more frequent drug holidays may be necessary.
As a recovering alcoholic, you may be more prone to addiction and tolerance problems than the average person.
Date: Wednesday, June 17, 1998 6:52 PM
I am a 31 year old male with RLS symptoms and have had leg sensations for a year. My 58 year old father has had the same sensations for 2 years. We have both had neurological testing that show nothing abnormal and are both being treated with Klonopin.
My question is this. outside of the common RLS sensations our 'twitches' are visual in the calf and feet and sometimes other parts of the body. My doctor and others I spoke to were familiar with 'feeling the twitches' but I can see them as well. Is this common with RLS because it is very concerning.
The "twitches" which you describe are called PLMD (Periodic Limb Movement Disorder). This can result in large leg jerks or non-visible leg muscle twitching. Many can see and feel the twitches. Over 90% of RLS sufferers have PLMD associated with their problem.
Date: Thursday, June 18, 1998 10:51 AM
Subject: hot water - pregnancy
I have found that I can relieve the sensations of RLS by dousing my legs with very hot water. I sit on the edge of the tub and use a sprayer, starting with very warm water and increasing the temperature until it is as hot as I can stand. It is not unpleasant. Before I learned anything about RLS, I hypothesized that it was some vascular phenomenon, because this technique worked so well for me and was obviously associated with significant cutaneous vasodilatation.
It is not a perfect remedy, because sometimes I will awake later in the night with the symptoms. In spite of that, I think it is worth trying, especially if you want to or need to avoid drugs, as I do, being pregnant. Incidentally, my RLS has worsened since I became pregnant. Is there any known association between pregnancy and exacerbation of RLS?
There is a very strong association between pregnancy and RLS. This is often the first time that women experience RLS, only to then have it come back later in life. Pregnancy most often causes RLS to worsen. Please see our RLS Treatment Page for more info.
Date: Thursday, June 18, 1998 3:05 PM
My RLS is presently being treated with Permax/Sinemet +/-Klonopin. Have tried all the usual home remedies such as valerian, different vitamins, stopping offending chemicals or drugs. Do you have any info on the treatment of RLS using acupuncture? No diagnosed genetic or medical reasons for onset of RLS 3 years ago.
I am a physically active 46 year old female. Frustrated by western medicine quick fix with drugs. Gives temporary relief from the annoying symptoms, but does nothing about eliminating the underlying cause. Seek holistic approach to this problem.
Lots of RLS sufferers are looking for non-drug treatments for their problems. This approach seems to help only a minority of RLS patients and then only some of the time. You can check our letters and our RLS Treatment Page for many holistic approaches that may be helpful.
Acupuncture has helped a few RLS patients, but most do not get improvement with this modality of treatment.
Date: Thursday, June 18, 1998 7:58 PM
Subject: My RLS Hell
My name is Lisa and I have had RLS for about 10 years now. I have two brothers and only one of them has it. My father doesn't but my mom does and her sister had it. It is the most annoying, frustrating thing I've dealt with.
I have noticed that on the market sleep aids- Sominex, Excedrin PM, Unisom etc, really aggravate it bad. My brother thought he was crazy until he heard me complaining about it one day. To our surprise that is when we found out that my mom and her sister had it as well. I thought I was alone for along time. People looked at me like I was nuts when I tried to explain it to them. I've noticed that exercising also aggravates it, but I refuse to stop doing that.
I'm glad I'm not alone.
Thank you ,
Light exercise may help, but vigorous exercise may worsen the RLS. See your doctor about medication treatment if you feel your RLS is bad enough to warrant it.
Date: Sunday, June 28, 1998 10:22 AM
I originally contacted you in March, 1998, with a severe problem in withdrawing from Sinemet. (page 10) With your help, and my dr's willingness to take advice from your site, I have been quite successful with the Permax therapy. For three months, I was able to control the symptoms with a combination of St. John's Wort, which also has stabilized a rather difficult case of depression, and Permax (2 and a half to three of the .05 mg. tablets split between the evening meal and bed time). During that time , I did have intermittent occasions when the restless legs seemed worse, particularly when I've had a more physically active day. On those days, I would have to resort to codeine , hot baths etc. to get to sleep.
Lately, I've been having more difficulty with the restless legs, starting earlier in the day and giving me more difficulty at night. I am afraid to increase the Permax because of my previous problem with the augmentation and rebound of the Sinemet. Is Permax as likely to cause the same kinds of problems as Sinemet? Can Permax be used on an occasional basis, that is, can I take an extra half or whole .05 mg. tablet as needed on nights when I need the extra help, and then return to my normal dose the next day? I have tried this a couple of times and had the feeling that I was provoking an earlier attack the next day. (withdrawal?)
As an aside, I am struggling with weight gain and am suspicious that the combination of Permax and St. John's Wort have contributed to it. Could this be the case? It may seem like a small price to pay, but it does affect my self image and does bother me.
I realize that I am currently taking a very small dose of the Permax, and the treatment page says I can go a lot higher , I guess I am just looking for clarification and reassurance. Thank you once again for your selfless efforts on behalf of RLS sufferers.
You may be getting augmentation/rebound problems with Permax. This is much less common than with Sinemet, but can happen. You may want to change to Mirapex, which is similar in action to Permax, but may have less side effects.
I do not think that Permax/St. John's Wort causes weight gain, but one never knows for sure with medications.
Date: Friday, June 19, 1998 3:17 AM
Subject: RLS & surgery
I am writing because I just found out a couple of days ago that I have to have surgery for a ruptured heniated disk. I also have severe RLS and am being sent to a sleep clinic at Dartmouth Hithcock in NH. MY question is: Do you think that surgery will make my RLS symptoms worse or better? I am hoping for the latter. Thanks ahead of time! I always appreciate your input.
Donna / Vermont
Usually surgery has no effect on RLS. Several patients have written in to state that their RLS manifested only after back surgery or got worse after it. These people are in the minority however, but when this does occur, they never forget it.
Date: Friday, June 19, 1998 12:16 PM
Subject: More Questions
I wrote about a week ago. Thank-you so much for the quick reply! I made an appointment with my doctor and she agreed I might have RLS and/or PLMD. She started me on Ambien, told me to take 1/2 a dose first then a full dose if I felt I needed it. The warning with it said to take only when ready for bed, because it would knock you out for 7-8 hrs. Well, I was looking forwarded to some quality sleep. I took my dose and went to bed. Two hours. later when my husband came to bed, I was still awake!
Although I hadn't had any jerking (which by about 1 hr after lying down before it started). Now, when I finally went to sleep, I woke up periodically thoughout the night (yet never suffered jerking legs). I even took another 1/2 a pill around midnight because I had woke up twice before that and was afraid that my symptoms would follow another waking spell. Will this med. work better later on?
Also, today I gave myself a work out cleaning house (so far this summer I had been lethargic daily from lack of sleep). Now (about 2 p.m.) I am so tired and so sore. This is how I feel every day after teaching school. I felt sore, tired, stiff, too tired to sleep, too tired to fix supper, too tired to care about housework. Does this go along with RLS/PLMD? Or is it something else?
One time, before my doctor gave me a nerve medication. I got bed sore, so sore at night that I couldn't stay in bed. Is this like Fibromyalgia ? She didn't think so. But a friend of mine who has it says it is.
Thank-you for your time, and for such a wonderful web site!
J.S. of Covington
If the leg jerks are gone with Ambien, then the PLMD is not keeping you awake. It is impossible from your description to say what is keeping you awake, but that is likely an unrelated matter. Trouble falling asleep is not typical of Fibromyalgia.
Another letter from J.S.
Date: Monday, June 22, 1998 11:44 AM
My doctor started me on this Last Friday. This 1st night, it didn't seem to do much, but did stop the jerks (I took 2.5 mg first, then the other half a tab. 2 hrs later because I felt wide awake, then I took a Tylenol p.m. after 2 more hrs.) I did this again the next night, but before the Tylenol p.m. I had started the jerks) The 3rd night was the same, but I didn't jerk as much and I wok up with a terrible headache. Last night, I had some jerking again, and the headache was much worse. Also, I feel like all the nerves in my mouth are super sensitive! Are these common complaints with Ambien? Do I just need to give it more time???
J.S. in Covington, TX.
These are not common side effects of Ambien. Stay away from the Tylenol PM, as this drug can worsen your problem.
If Ambien is not helping, consider Xanax.
Date: Friday, June 19, 1998 3:11 PM
I cannot get over how many people also have this problem!!... I personally do not know anyone, and figure my friends must think I am crazy when I try to explain the crawly, cold feeling in my legs and particularly behind my knee caps. I just have to move constantly!. I have great difficulty many nights, and also while in planes and theatres....and then the jerking right when I am dozing off to sleep!. I tried Benadryl at my drs suggestion. It only seemed to help for a short time. Now I am trying Advil.. This has been going on for years!
Benadryl may actually worsen RLS (as with many antihistamines). If it causes you to be sleepy, it may help. Advil generally provides little or no help. You may want to consider seeing your doctor for prescription medication.
Date: Saturday, June 20, 1998 12:40 AM
Does anybody else tend to get extremely irritable while having RLS in the day time. Sometimes I feel like something is crawling in my hair and all over. But I find myself to be very irritable and depressed. This seems to happen when I don't catch IT before IT starts. And then I just want to die. I cannot sit down to my computer too long, or sit too long at work, and to take a nap I have to take 1/2 -1 Sinemet and take it on my way home from work, so that I can drive in peace.
Right now I am on Sinemet 1-2 per day, 1 Estradiol, 1 Klonopin at night, 1 Ambien at night, 1 Soma at night, and Wellbutrin 3-2x's a day. Depression really never leaves. I have been diagnosed with Fibromyalgia. Sometimes I hurt all over. Neck and lower back especially.
Do others have multiple symptoms? Is their a connection with Peri-menopause, PMS, Fibromyalgia, Depression and RLS. I would rather be in pain than have my legs go nuts. With all that med. I am now sleeping 4-5 hours straight before having to go to the bathroom. Then I sleep off and on. Extremely tired every day. Even as soon as I get to work.
I am frustrated
Any chronic pain syndrome (such as arthritis, back pain, etc.) can cause irritability and depression. There may be a link with Fibromyalgia (see our RLS Treatment Page), but this is not well understood yet. Hormones can also play a role, but also not well understood. The antidepressant medications (in your case, Wellbutrin), can worsen RLS.
Date: Monday, June 22, 1998 3:24 PM
Subject: RLS-Trauma Related
I was told that you are very experienced with RLS related issues. I had a bad fall in May of 96'. I got RLS symptoms within three days of this fall. I was operated on ten months later for a fusion of my neck, C5/C6. I have cervical root damage and lower back problems. I know this injury caused my RLS and is not family related. Blood work done excludes other causes.
Can you please tell me if trauma related RLS has been documented and if so, please provide some info. please?
Thanks so much!!!
There is no medical proof that trauma causes RLS. We have many cases of patients who have had RLS occur or significantly worsen after trauma/surgery to the back or neck (especially to the spine). There really is no explanation of why there is an association and why only a few people with neck/back trauma or surgery get RLS.
Date: Wednesday, June 24, 1998 5:38 AM
Subject: When a Drug Holiday doesn't help
I'm sorry to keep sending mail, but I'm stuck, and you folks in California are my very best resource.
I've been taking Permax for about 6 months at a dose of 500 micrograms per day. The drug worked well for a period of about 6 weeks. Several months ago, the effectiveness of the drug began to fade, and increasing the dose didn't help, so I tried my first drug holiday for 4 days. It worked great.
About month ago, the fade began again, so I tried another holiday. This time, I stayed off the Permax for a whole week.
But the Permax hasn't helped even after the holiday. What do you think? Maybe I could have taken an even longer holiday, but shouldn't the week-long holiday have helped me at least a little? (I tried upping the dose before that first drug holiday, and it didn't do any good at all. I also tried upping the dose last night, but with no effect.)
I should note that, before I started Permax, I spent a year on Bromocriptine. Like the Permax, the Bromocriptine worked well for a while--about a month on one occasion--but its effectiveness never lasted, and I'd have to up the dose. My doctor finally agreed with you folks that Bromocriptine might not be the right drug for me.
I know that you told me in an earlier e-mail that there were new variations of Permax available, but I thought they were mostly for folks who did well with Permax but had problems with side effects.
Mark, I'm curious: I've been hoping for the right drug for a year and a half now. How do others deal with this? How do you live your life when it takes YEARS just waiting for a drug to wake you up?
Some patients (thankfully very few) develop tolerance to Permax. When that happens, drug holidays are in order. The week off should have been sufficient, but you may have needed longer. Another possibility is that your RLS may be worsening with time.
You may want to start Mirapex (this is similar, but newer than Permax). If you think you are developing tolerance to Mirapex, take regular drug holidays of at least 2-3 days off the drug every two weeks.
Many RLS sufferers do find it very hard to cope with their disease. There have been severe cases of depression and even suicides. Luckily, with modern drugs and a knowledgeable physician, almost all patients can be controlled so that the RLS symptoms are minor at worst.
Date: Monday, June 29, 1998 8:20 AM
My husband has a problem with his legs jerking at night and unable to go to sleep. He has many other health problems some of them quite serious. I am really concerned because he called his doctor and the doctor prescribed clonazepam 1 mg at bedtime. He has been diagnosed with Hepatitis C/Near end stage Cirrhosis/Insulin dependant Diabetes. He is on a lot of medication already. Insulin/Zestril(BP)/Lasix(ascites)/Darvon 2 a day(headaches)/Atarax(itching)/Prozac 2 a day(depression) and now the clonazepam.
I am very concerned because his motor skills and mental alertness have been greatly affected even far into the next day. I know the cirrhosis affects the brain function also because his ammonia level is very elevated and that the liver can not break down the medication like it should. I work a full time job and have been trying to keep him mentally alert as much as I can because he is home by himself a lot of the time during the school year when our 16 y/o is in school.
He loves the clonazepam because before he was not getting only 2-3 hours sleep a night. He's only been taking the drug 2 weeks but I can see a marked downhill slide; he gets very defensive when I tell it's this new medication because he's so happy to get some sleep. Do you think maybe if I halve the tablet it would help? I intend to ask the doctor about decreasing the dosage but he still has 2 weeks of pills before a refill is due.
Any suggestions are appreciated.
Sedatives other than Klonopin (clonazepam) should work much better. Klonopin is a very long acting sedative with daytime sleepiness as one of its main side effects. I rarely use Klonopin for PLMD (leg jerking problem). Xanax or Ambien should work well (with perhaps a mild reduction in dose due to his liver problems) without much if any daytime sleepiness.
Permax or other Parkinson's disease medications may also be helpful with no daytime sedation at all.
Date: Wednesday, June 24, 1998 8:59 AM
I just found this site and I was SO excited. Maybe I can get some help after 30 years of "twidgets".
My husband and I are leaving on a trip to Norway July 6th and I am really worried about the long flight. When I sit down at the end of the day to watch the news, my legs go bonkers! They flail around and I feel like they're going to explode. I drive my whole family nuts. When I go to bed, I don't usually have problems with them, but when I do, I get up and take a couple of aspirin and that seems to help.
Road trips are awful. About 2 hours of riding is all my legs can take and I am miserable the rest of the time, not to mention my poor family! How am I going to fly for all those hours and then do all of the traveling once we're there?
I know this is short notice, but could you help me before I leave?
Check out our RLS Treatment Page for more extensive therapy if you need it in the future. For now, your problem is quite easy to solve. Have your doctor prescribe Xanax 0.25 mg tablets. Take 1-3 of these once seated on the airplane. You may sleep for most of the trip, but you should not be bothered much by the "twidgets".
You may want to have a back up of a few Vicodin tablets (one tablet every 6 hours if needed) in case the Xanax is not sufficient. Thanks for your pet name for RLS and have a good trip.
Date: Tuesday, June 23, 1998 7:51 AM
Subject: Re: implantation.
My mother has had RLS for over 40 years. Her condition has worsened to the point she gets very little relief day or night. She is on Sinemet every 2 hrs. Very little relief. She is seeing a Neurologist and he has tried her on everything that he is aware of and nothing is working. His last option is an implantation device. He will implant it temporarily for 3 days to see if it will work. If it is successful then Permax. implant it. I'm not sure if it is a shocking device or a pain control device. Has anyone ever heard of this or know of its effectiveness? Please e-mail me right away as she goes to the doctor on Wed. June 24. Thank you.
Sorry I could not get to you sooner as I was out of town on vacation. It sounds as if the neurologist is giving her something like a TENS unit (nerve stimulation unit) that is used for muscular disorders. This may work in a few (see our RLS Treatment Page) but has not helped most who have tried it.
The Sinemet is likely causing problems with augmentation and rebound, thus requiring the high doses (again, please see our section on Sinemet on our Treatment Page). There are lots of other drug strategies, but it is difficult to suggest what to do without knowing much more about your mother's RLS treatment history. You may want to see a sleep specialist who is knowledgeable in RLS.
A Reply from Janet
Date: Thursday, July 02, 1998 5:20 PM
Subject: Re: implantation.
The neurologist told us that Sinemet did not cause rebound or augmentation. He said she was getting worse because she was getting older and the length of time she had had RLS. The implantation will go into her spinal column and will block the pain messages to the brain. She will have an opportunity to test it for 48 hours before it is permanent. implanted.
I suggested some of the other Parkinson's disease drugs that he had not used (from your web site) and he very quickly said they won't work with her. He has been very good to work with her but I was not pleased with the last visit. She is still trying to decide whether to have it done or not. If you have any knowledge about this procedure please let me know.
Thank you for responding,
There is a wealth of medical literature describing rebound and augmentation with Sinemet in the treatment of RLS. There is no medical literature (to the best of my knowledge) that supports a permanent implant of any device for treating RLS.
I would strongly urge you to get a second opinion from an RLS specialist before proceeding with surgery. Even if the temporary device works, it does not guarantee that a permanent one will effective in the long run.
Date: Monday, June 29, 1998 8:07 AM
Subject: Permax and Requip side effects( difficulty breathing )
I have a member who has started taking Requip for her RLS, and has been on Permax. She had difficulty breathing and had to go to the hospital for the symptoms , and the doctor said it was due to the meds. Do you have any suggestions on how to keep this from occurring while reducing the Permax and starting the Requip. Her doctor didn't reassure her so she has asked me to check into it for her.
Thank you for your help with this Issue and keep up the good work there in Southern CALIFORNIA.
James F. H.
GREATER PENSACOLA AREA RLS SUPPORT
I have never seen a case of Permax and breathing problems (I am also a lung specialist) despite the fact that it is listed as a possible side effect in the PDR. It is likely that Requip would have a similar side effect profile, and taking the two drugs together may not be the best idea. She should probably taper off of the Permax first, then try Requip or Mirapex.
Date: Monday, June 22, 1998 5:50 AM
Subject: RLS & PLMS
Well, I've been on Mirapex for 31/2 weeks now, increasing my dosage weekly from .125mg. to .375mg. The restlessness is better during the evening but comes on with a vengeance during the night. I was supposed to stop taking Sinemet when I started Mirapex but the Dr. said continue taking one at bedtime if I couldn't get to sleep, so I have. He also said to quit all caffeine or "just live with my legs hurting"! I told him that I am so foggy-headed in the mornings that coffee really helps. After my morning coffee of 4-5 cups I can still fall asleep in the afternoon and sleep a couple of hours. How long does caffeine stay in my body and would it make my legs worse if I don't drink any 8 hours before bedtime?
Also, I had another interesting experience the other night. I was trying to fall asleep and thought I was still awake but I dreamed that someone was opening a door real quickly in my face and I jumped to get out of the way and hit myself in the face. I then woke up or whatever and realized that I was having one of those jerks. What was that and is that common in PLMS patients?
What do you think of my dosage of Mirapex and Sinemet (1 25/100)? How long until I know for sure if Mirapex is going to help? Does it take several weeks to work?
Thanks so much for your website!!! It is really helping understand that this is a real disorder. I'm with the others who find good relief from Vicodin 5-10mg. but my doctor says he cannot prescribe it because I will be on medicine the rest of my life. I know what it feels like to be desperate and beyond caring. I've hoped and waited 9 years for something to help me feel 'normal' and I've just begun ( with help from your website) to take an active role in my treatment.
Your dose of Mirapex is reasonable, but you may need a little more. You may need a small dose at about 6 p.m., then a larger dose 1 hour before bedtime. There is no problem with the one Sinemet at bedtime, but I generally get my patients off the Sinemet completely. Caffeine should be out of your body by 8 hours.
We have many patients on chronic codeine/Vicodin or other narcotic doses (with regular drug holidays of course). Most drs worry about this, but that is not a reason to withhold this beneficial treatment. The doctor does need to monitor the dosing of the narcotic drug, and make sure you take your drug holidays, but otherwise not giving this medication is ill considered. The Mirapex works immediately, but the dose is increased slowly to avoid side effects.
Date: Tuesday, June 23, 1998 6:25 PM
Subject: RLS syndrome
My name is Debbie. I'm sure I have RLS. I have had it for about 2 years. because of that I have had a lot of time to evaluate when it is the worst. i've noticed that about 10 days or so before my menstrual cycle it really gets worse. to the point that I cant sleep. it there any info on menstrual cycle and RLS.? just curious.
I'm going to try some iron and some vitamins and see if that helps.
Thanks for your time,
Many female RLS sufferers have noted a relationship between RLS symptoms and their menstrual cycles. There is no explanation or medical literature for this phenomenon.
Date: Tuesday, June 23, 1998 10:40 PM
I have had RLS for many years, but lately it is driving me crazy. I was on a two week motorcycle trip and it seemed to get worse as the day wore on. My doctor once prescribed amitriptyline. I really am not sure if it helped - it didn't make it worse. I stopped taking it for some reason. My doctor also prescribed Prozac, but it made me sick.
What is Xantac? Side effects?
I work full time and can't afford a drug that makes me sleepy, nor do I want to experience digestive disorders.
The antidepressants (amitriptyline, Prozac) can have good, bad or neutral effects on RLS. Xanax (not Zantac which is an anti-ulcer drug) is a sedative in the Valium family and is appropriate just for bedtime use to promote sleep in RLS patients.
The best class of medications for you would be the Parkinson's disease group (Permax, Mirapex). These are very effective and do not make people drowsy.
Date: Monday, June 29, 1998 11:52 PM
Subject: It's a living hell
I have been afflicted ever since my first laminectomy. In attempting to find a cure, three more surgeries have been performed..NO help! I am sitting at this computer dazzled by the information found on the net. Ever since 1998 I have suffered from what appears to be RLS. For all of these years I have not been able to find a doctor who has a clue. They say it is nerve damage at the heart of my "living hell'. My symptoms appear to fit the mold...God forbid.
My question is, could low back surgery damage the nerve sufficiently to cause RLS? Is it a result of outside forces such as trauma; could it be the result of other causes not related direct contact with the nerve in the sciatic nerve...What ever it is it is a virtual living hell no mistake about it. I have all of the symptoms described by others..and my heartfelt sympathies go out to all of you who suffer this diabolical malady. I would appreciate hearing from anyone and particularly a physician eminently familiar with the etiology.
Thanks and God Bless
Many RLS sufferers have noted that spine surgery or trauma may start up their RLS problem. It is not known why there is a link. Please see a neurologist or sleep specialist who should be able to treat you and end your RLS suffering. Unfortunately the etiology (cause) of RLS is completely unknown.
Date: Tuesday, June 30, 1998 2:17 PM
Subject: Re: RLS-Trauma Related
When I fell and severely injured my neck I got the RLS/PLMD sensations about three days later. I was operated on and had my C5/C6 fused. This did not stop the RLS/PLMD but changed how it came on at night. I also experience daytime RLS.
In your letter you said there was no medical "evidence" substantiate trauma- induced RLS/PLMD. However, you did indicate that there are cases of RLS/PLMD occurring after a trauma or operation. Can I take this to mean that RLS/PLMD has been known to occur after a trauma or surgery but the medical reasons are unknown. Wouldn't this be the same response for any kind of RLS/PLMD?
I am living proof that RLS/PLMD can be induced via trauma. Can you confirm the fact that cases exist where trauma has indeed been directly related to the onset of RLS/PLMD. My dr, well known in her own right on the east coast, has directly related my RLS/PLMD to my fall and neck injury.
Thank you so much for your time in responding to this email. It is always nice to hear from the experts on RLS/PLMD.
Please see the above letter. You are right in that the cause of RLS is not known, therefor it is impossible to understand the link/cause of RLS and spine injury/trauma. Almost all people who have spine surgery do not end up with RLS. Why a very small percentage of people develop RLS after spine surgery is a real mystery.
Date: Wednesday, July 01, 1998 4:58 PM
Subject: RLS and memory loss
What a day I had today. I belong to the cyberspace support group, and we have had many discussions about memory loss lately. Today, I could not remember the simplest of things; I drew a blank all day. I'm sure it has to do with sleep deprivation and the pain I am experiencing in my leg and back. I see my neurologist next week for scheduling the heniated disc surgery; I can't wait!
I take Ultram, Permax, Xanax, and Trazadone. Can one or all of these contribute to the memory loss? I am still on the very lowest dosage of all of them, except for the Ultram. My neurologist has upped that dosage for the pain relief until my surgery.
Memory loss can be difficult to pin down. All the drugs could possibly be responsible, and the only way to check would be to stop them one at a time. Sleep deprivation and stress are the two most likely possibilities for memory loss in general.
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