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Sent: Wednesday, February 28, 2001 7:40 PM
I've been taking Requip for some time for my RLS. I'm still having a problem with nausea from it whether I take one or two pills. I always take them with food. The problem is worse some times than others for no apparent reason. My doctor doesn't seem to think it's much of a problem, but Requip has done better for my RLS than anything else, but the nausea is getting almost intolerable.
Unfortunately, all anti-nausea medications in the USA cause worsening of RLS. If you can get the drug Domperidone from Canada, you would be able to take care of your nausea without worsening the RLS.
Other than trying Mirapex, Symmetrel, Parlodel or other dopamine agents you may be stuck with the nausea or RLS unless other classes of RLS medications are helpful in your case.
Sent: Wednesday, February 28, 2001 8:17 PM
Subject: RLS in the back?
About two month ago, my mother started suffering sleepless night due to something similar to the symptoms that RLS patients have. The only difference is the tingling sensations are in her lower back and extend all the way to her neck(not in her legs.) Pacing back and forth and crawling on the ground seems to relieve the sensations but this thing is driving her so crazy that her wishes she would die. Things get worst especially at night after she has had a hour of sleep. She wakes up and the tingling is at its high point.
Is it possible that she is suffering from RLS but only in her back? I've taken her to different doctors and no one has yet to find anything physically wrong with her.
Any advice or help would be deeply appreciated.
RLS can occur in any muscle area of the body. We have had patients with RLS in the abdominal muscles, chest and various back muscles. Your mother's case certainly could be RLS. If her symptoms come at rest and are relieved with movement and occur maximally in the evening/night, then RLS is very likely.
It would very likely be worth a trial of Mirapex to see if her symptoms go away. If they do, then you can be 99% sure that she has RLS.
Sent: Wednesday, February 28, 2001 10:17 PM
Subject: OxyContin for RLS
I've been diagnosed with RLS for about 7 years. I had it long before I was treated or diagnosed. I've been on many , many medications. From Klonopin to all the types of Sinemet available to Permax, Neurontin and Methadone. Some having good effects for a limited time and others that made me feel drunk. I was looking for a drug that would help with the RLS and also let me live a life where I wasn't drugged up. Or should I say FEEL drugged up to where I could not function normally. Like going to work or simply driving a vehicle.
I have found a drug that has worked for me for almost 2 years now and seems to be doing the job I'd like it to do. The drug is Oxycontin 20mg. I take one a day, about two hours before going to sleep and it works great. Having RLS you know that when you find something that works, you stick with it. The other drugs I took lasted about one year before I was immune to the effects. I can honestly say that the Oxycontin has lasted over a year and I can function normally!!
Many people don't approve of this drug but some people it may help. I have a very severe case of RLS and I think I know what I'm talking about.
Michael K. S.
OxyContin is a potent narcotic which is quite effective for treating RLS. There is always a concern that narcotics will lose their effectiveness (tolerance) after long term usage. Taking regular drug holidays (at least 2 days off every 2 weeks) may help prevent this problem. Some use Ultram (a non-narcotic pain killer) that may be just as effective for RLS.
Another solution might be to try Mirapex or Requip. They are the newer (compared to the older Permax) dopamine agonists that tend to work better with less side effects. You might find that you need less or no narcotic drugs while on one of these new medications.
Sent: Thursday, March 01, 2001 6:40 AM
Subject: ferritin, iron & RLS
A number of respondents have suggested a link between ferritin and iron levels and RLS.Could you elaborate as to the correlation .As well, would you know if folic acid,calcium and magnesium also contribute to RLS symptoms, severity and frequency..Finally, are there any other mineral /vitamin that may contribute to RLS symptom severity and frequency.
Iron is the only mineral/vitamin that has a reasonable chance of improving RLS when found to be low. Serum ferritin is a more sensitive test for low iron levels than the actual serum iron test. When ferritin levels are below 45, taking iron will often help RLS.
Sent: Friday, March 02, 2001 9:43 AM
Subject: It wont stop!
I cant believe that there is a name for what I have. I've told my family and different doctors about this weird feeling that I get in my ankles, and no one seems to know what the hell I'm talking about. I will be watching TV or doing something on the computer or trying to sleep and my ankles just get this horrible feeling that I cant stop, so what I have to do is stretch them up and down very hard or I bang them together very hard and fast, its kind of like beating them into submission, but the relief is only temporary.
It is driving me crazy and it keeps me awake sometimes, it seems that I always have a hard time getting to sleep though. but its good to know there is a name for this crazy ankle syndrome that I have, I just cant believe other people are experiencing some of the same problems that I have. PLEASE HELP
Have your doctor prescribe Mirapex or Requip as per our RLS Treatment Page and your crazy ankle syndrome should not bother you any longer.
Sent: Monday, March 05, 2001 11:18 AM
Subject: Diagnosing RLS?
I finally got some relief for my problem. I have been on Valium,Klonopin, Xanax, 2 drug rehabs, they put me on antidepressants. I've been on over 10 different antidepressants. Nothing has given me any relief, They told me I am an alcoholic,drug addict, A.D.D., and/or depressed.
I finally saw Siong-Chi Lin at the Mayo Clinic in Jacksonville. He put me on Mirapex. It's only been 5 days and I feel better than I have in 10 years. Cost me $40,000. in doctors and rehabs. What a misdiagnosed disease! What a pain! Your web site helped me figure out what was really wrong with me. The doctors didn't know. Kept telling me I was crazy. Unbelievable!!!
Hope this disease gets more publicity in the future. My legs feel good on the Mirapex. Hope it continues. Your site saved me. Thanks. Wonder how many people are trying to drink or drug this pain away??
We are seeing and helping only the tip of the RLS iceberg. Most do not even know how or that they should complain to their doctor.
Sent: Tuesday, March 06, 2001 10:52 AM
Subject: What is the cause of RLS?
I have been reading several of the RLS letters that folks have been sending in. They all sound like me. For several months now, my legs bother me at night. I can go to bed at any time and sleep real good for about 3 to 4 hours then pow, I instantly wake up and then start the tossing and turning until time to go to work. My husband ends up with nothing but a piece of sheet to cover him because I have managed to get all our covers to my side.
I am up and down the rest of the night and I am at wits end. My legs hurt so bad and I can't stand it. But, I refuse to go on any medication to just have to go off it and still have the same problem.
What I would like to know, WHAT CAUSES RLS? I am wondering is it too much caffeine, vitamin C, not enough calcium. Is anyone trying to find out what to not do to get this and how to get rid of it without covering it up with drugs? Does this make sense or am I looking for an answer so hard it's impossible?
Patsy A. W.
Your questions are very reasonable, but medical research has not caught up with these answers for RLS yet. There are lots of researchers working on this answer, but so far we are not very close.
Sometimes (generally, very rarely) a lack of minerals or vitamins may be associated with RLS and adding them may be helpful. The only exception is iron, which has been linked to RLS and will often improve the RLS when added. Have your doctor check a serum ferritin level which is a very sensitive test for low iron (much better than the usual serum iron test).
For 95% of RLS sufferers taking medication is the only solution. Medications such as Mirapex or Requip can be taken in very low dose with amazing relief of RLS symptoms (but not changing the actual disease). You would be surprised at how much better you would feel (and your husband) if you went on this medication.
Sent: Tuesday, March 06, 2001 10:02 AM
Subject: Just living with RLS.
I am so excited to find you! I was diagnosed with RLS about 10 years ago. I was told that no one really knows what causes it, and there wasn't much that could be done about it. I was prescribed quinine that did absolutely nothing for it. Since then I have been just "living with it".
The first of the year I changed jobs and started working the midnight shift. My legs got so bad, and my sleeping so pitiful, that I decided to try a chiropractor. He's been using some pressure therapy and has me taking Kava Kava root and folic acid. My symptoms seem to be improving slightly (or am I just getting used to my new job and hours?)
I had no idea all this information and possible help was out there (I'm brand new to the computer world). In fact I'm sitting here now during what should be the "middle of the night" for me. I'm sure you can guess why I'm here and not in bed where I belong. I'm not sure, yet , what to do with all my new found information, but I'll keep reading and hopefully something will lead me in the right direction.
Thank you so much!
Laura J. D.
Have your doctor prescribe Mirapex or Requip and your RLS suffering days will be over.
Sent: Wednesday, March 07, 2001 8:17 AM
Subject: Restless Hell - What's In A Name?
I'm a 39 year old male. Like most who have posted here I feel a mixture of relief, sadness and determination. Relief in realizing I'm not alone and/or insane. Sadness because it seems the condition worsens with age and the main solution offered is a rotating cocktail of potentially toxic medications. And determination to put all the new information I've found on this site to good use and post results back here.
I think I've had Restless Legs since my mid teens although it was very mild then and just a very vague numbness or 'otherness' that was difficult to describe. I fell victim to a strange nervous-virus in my early 20's that was never properly diagnosed but which I believe was probably some form of Chronic Fatigue or Post Viral Fatigue Syndrome and that seemed to trigger the RLS more fully. During my 20's and 30's I've lived a conflicted life, on the one hand exercising fairly regularly and eating a healthy diet with lengthy periods of vegetarianism/veganism but against this I would also have bouts of excessive alcohol consumption, smoking cigarettes and taking drugs, notably Ecstasy, which now seems to be linked to possible brain/nerve damage. All of the aforementioned could also possibly cause mineral deficiency I suppose.
Anyway, to cut a long story short, regardless of what I did these strange sensations in my legs increased as time went by. I found it difficult to describe to doctors. It felt like insects gnawing through the nerves of my legs. Like a highly intense version of having the soles of the feet tickled. Not quite painful but intensely uncomfortable. The symptoms worsened at night, when I was tired or when sitting in a confined space for any length of time.
Over the years I had tests for everything, including Multiple Sclerosis. I had CAT scans, MRI's, spinal tap, blood tests, and saw every kind of alternative practitioner until a Neurologist in London diagnosed me with Restless Legs about 8 years ago. The name seemed mildly comical, even benign sounding. Maybe the name is one of the reasons our disease isn't taken as seriously as it should be? For something that afflicts such a significant portion of the population and causes such misery it certainly should be taken more seriously. He said there was medication I could take for it but I declined as it wasn't keeping me awake at night at that point (I don't have PLMD) and I was worried about the long term effects of the drugs.
It was also the not knowing that really worried me and until the tests cleared me I'd dreaded it was MS or Parkinson's. Since diagnosis (and back in the US) I have asked many people about it but no one seems to know much or be able to offer advice. The disease itself fluctuates in it's severity, is sometimes unbearable, sometimes mild and like most ailments seems aggravated by stress and fatigue. That vague numb, tingling 'otherness' is ever present in my legs but the intense electricity type cycles of thin throbbing occur mostly at nights with varying intensity. I also suffer from muscle twitches in the legs.
Things that have helped include sitting for 15 minutes in ice cold baths, massages, sex, meditation, yoga and eating healthily. Things that irritate include certain over the counter medicines such as Thera-Flu and other cold or cough medications. If I take these I'll be writhing in agony throughout the night with the intensification of the RLS as well as a rapid heart beat. As I'm growing older I also seem to have become increasingly sensitive to caffeine and alcohol as well as certain other foods like breakfast cereals, wheat and bread. It's hard to know where the Restless Legs starts and ends and where other conditions, possibly food allergies, begin. It does seem that RLS sufferers are particularly hypersensitive.
My questions to you are these; Are there any clues that it may be related to food allergies, Candida yeast infections, ME, CFS, Epstein Barr or circulation disorders? How does sex affect, or is affected by, RLS? What percentage of sufferers are able to cure it through a properly diagnosed and remedied iron, calcium, magnesium or other mineral deficiency? Does everyone with RLS eventually suffer from PLMD?
Thank you for your time. Your site is a wonderful resource and I look forward to investigating some of the possible causes you've put forward, such as mineral deficiency, and posting feedback here. I think the Internet is not only valuable for sufferers but also, I would hope, for medical researchers too. One of the wonders of the Web is the ability to have all of these testimonials and case histories from around the world piled up in one place and at the fingertips to enable comparison, contrast and cross correlation.
Only a decade ago this intensity of interaction would have taken years by word of mouth and we would have all continued suffering in silence and solitude. I truly believe greater understanding of this and other obscure conditions lies just around the corner. Together WE WILL be able to bring greater understanding and perhaps even a cure, not only for ourselves but also for our children and their children.
With best wishes to all fellow sufferers on this list Matt J.
There is no known correlation with RLS with food allergies, Candida yeast infections, ME, Epstein Barr or circulation disorders. There has been one or two articles finding a mild link with CFS (Chronic Fatigue Syndrome), but many feel that it is a cause of CFS rather than linked otherwise. There are diseases such as kidney failure, iron deficiency anemia, etc. that are very closely linked to RLS.
In patients that are low in iron (serum ferritin decreased), about 1/3 to 1/2 will get benefit from iron therapy. If ferritin levels are normal, iron will not help. Calcium, magnesium or other mineral deficiencies rarely have any affect on RLS so adding these are of little or no benefit.
Many RLS sufferers have noted that sexual orgasm can relieve RLS symptoms, but strangely enough, a few have noted the opposite.
At least 85% or more of RLS sufferers have PLMD, but in many this may only be a trivial problem that is barely (if at all) noticed by the RLS patient (generally much more noticed by the bed partner).
Sent: Friday, March 09, 2001 10:31 AM
Subject: Sleep, Ambien & ?
I really appreciate the information on your web site. I am a 56 year old female with RLS. I have been able to get off Sinemet and am taking 5 Mirapex an hour before bedtime. It is a great help! I usually go to sleep for an hour or so, but can't go back to sleep after waking up for the bathroom, etc. I, then, take an Ambien, it helps me get more sleep, but after 5 days or so of this routine, it doesn't work any more. Then I stop taking it for a couple of days (with little sleep and lingering headaches) before trying it again.
My question, when the Ambien stops working, could I switch to something else, say Xanax, and use it for a week, then go back to Ambien for a week, and repeat this process over and over? Appreciate any suggestions.
C.R. near Fresno
Changing to Xanax may help, but you still may develop tolerance to both drugs. The only way to tell is trial and error. Taking any type of sleeping pill on an intermittent basis is the only way to be sure that tolerance does not develop.
Sent: Saturday, March 10, 2001 3:46 AM
Subject: My treatment for RLS
I have had an extremely severe case of RLS since I was at least five. I am now 30. When I was in my teens, I have beat my legs black and blue to try and "kill" the tingling and crawling sensations. I would rather hurt than feel that "urge"!!
I have learned the following about RLS over my 25 years of suffering:
1.It is without a doubt a "mental" problem. The more you think about it the
worse it gets. You must find a way to forget about it to avoid it.
2. Sex is a great way to make it quit for the night. If I am even having a bad episode of RLS, sex will stop it. Thus, I have six kids.
3. Don't waste your time trying to fight the urge to move. It is stronger than you! However, I think you should move as little as possible to make the urge stop.
4. I have found lifting heavy weights before bed will help.
5. I believe ibuprofen helps and even an over the counter sleeping pill
6. I have noticed stress often increases my episodes.
7. I once had a Dr tell me She said that Diary products have something to do with it. She did not explain her theory. I was young and did not press her. I do not agree but felt I should share that.
I have one question. Is RLS race specific? Is there reports of Asians, Blacks, and Hispanics all suffering in equal ratios as Whites?
Thanks for your hints to control RLS without medications. There are no known racial bias for this disease.
Sent: Monday, March 12, 2001 12:10 AM
Subject: RLS caused by knee replacement?
In December my 50 year old husband had a total knee replacement. Ever since then he has had much trouble sleeping. He says that his leg feels like he has to move it all the time. Even during the day he cannot sit for very long at a time without getting up and moving it around or moving his knee up and down. When he first got home from the hospital and would try to sleep, as soon as he would dose off, his arms or legs would jerk and he would wake up.
For about 5 weeks he was only getting about 3 or 4 hours of sleep in a 24 hour time period. The doctor said that he had not heard of this before and just kind of laughed about it. He finally did prescribe Ambient for him to try at night. At first it didn't help at all, but after a couple of weeks it began to help him get a few more hours of sleep a night. Before his surgery he never had trouble sleeping.
I have had RLS ever since I was in high school and suffered with it for 20 years until I finally went through a sleep study and the neurologist. doctor diagnosed me. He tried a couple of the Parkinson's meds on me.... but I just did not feel well on them. He then put me on 200 mg. of Tegretol at night before bed.... and it works great. Especially if I combine it with a Calcium/magnesium. supplement.
Does this sound like RLS to you? (my husband) And have you heard of anybody else having this after a joint replacement? What is the likelihood of this maybe being temporary since it started after a trauma?
Thank you for listening,
Jennifer in Oregon
It is not uncommon for trauma to the body (such as surgery) to be a trigger for RLS. It does sound as if your husband does have RLS. Once present, RLS may wax and wane somewhat, but generally does not go away.
Sent: Monday, March 12, 2001 2:51 PM
Subject: Are the effects of opiate withdrawals the same as RLS?
I am writing to you again out of complete desperation. I have been into hospital here in the UK where they have eliminated any other cause of my symptoms other than RLS. I have it 24 hours a day, and find it so distressing when untreated that my hair falls out in patches and I become suicidally depressed. I feel like hacking my legs and arms off with a saw. Whilst in hospital they did a sleep study on me that, when I returned to my GP showed that I had 7 hours sleep. This was completely wrong.
The nurse on duty that night told me that I had managed only 2 and a half hours all night, and that was with having taken 10 30mg dihydrocodeine tablets that day (mainly at night). I was up and down all night, reading for as long as I could sit still, and walking around the hospital the rest of the night. They put me on Requip which has not worked at all as yet (6mg per day). Because of the incorrect sleep study results my consultants have insisted that I stay on 10 dhc per day - even though they are clearly not working.
It got to the point back in November where I was either going to take my own life or find a way of self medicating as my doctors were not taking me seriously. As I have a loving partner and mother I would not kill myself. I therefore actively went out to find somewhere that I could get heroin!! I have been using now for 5 months and have been put on a methadone rehab program (at least I don't have to have that filth in my house any more!).
The problem is is that my GP now wants me to go into hospital to detox completely from the heroin as he thinks that the withdrawals I get from the heroin are causing similar symptoms as the RLS - even though I had terrible RLS before I had taken any opiates -legal or otherwise. Because of my fragile state of mind I do not feel that I can do a crash detox just now, and my main question is - do opiate withdrawals mimic RLS, and after doing a detox am I likely to be back at square one with the RLS anyway - i.e. am I wasting my time, effort, and the very last drop of my emotional strength on the whim of a doctor who, with all due respect, knows only what I have told him about RLS.
Narcotic withdrawal is completely different from RLS. When you do try to withdraw an RLS patient from narcotics, the RLS will obviously worsen and thus be part (but separate from) the actual narcotic withdrawal.
Once off the narcotics, the RLS will be back to where you were before starting them.
Sent: Monday, March 12, 2001 4:21 PM
Subject: restless legs
Has anybody heard of using photon therapy in treating restless legs? In our area, there is a doctor that does these treatments. I know the one girl personally that took these treatments and got relief from them but if it is permanent relief remains to be seen. I hesitate because they are expensive and I can't find any information on whether the effects are permanent or not
I have not heard about photon therapy for any medical conditions, let alone RLS. It may be helpful (as just about any other untested therapy), but most of these unconventional therapies work well on only a very few RLS sufferers.
Sent: Monday, March 12, 2001 6:19 PM
Subject: Klonopin for RLS?
I have been taking clonazepam for two years now. My RLS has returned even while taking this medicine. Sleepless nights have returned!! Any suggestions? I really don't want to increase my dosage 2 tablets .5mg every night. I started taking 1/2 tablet 2 years ago---now I must take 2 for any relief. I have noticed that it has returned. It tends to drive me crazy!!! not to mention the lack of sleep my husband gets too!! Any suggestions will be appreciated.
Klonopin (clonazepam) is one of my least favorite medications for RLS. It tends to cause daytime sedation in many users and tolerance (such as in your case) is quite common.
The best idea would be to start on Mirapex or Requip, then once on an adequate dose, slowly taper of off Klonopin. Substituting Ambien for Klonopin would be helpful in the short term while tapering Klonopin. I would suggest using any sleeping pill (including Ambien) on an intermittent basis.
Sent: Wednesday, March 14, 2001 5:15 PM
I read all the letters and what everyone is taking. I have had RLS almost all of my life. It would only bother me every once in a while. and when I got pregnant I had a hard time sitting still in the movies or a long car ride. I didn't;t mention it to anyone because I couldn't describe the condition. I would sometime fidget around and kick but I would be just fine once I fell asleep, and I would sleep all night and I could even go back to sleep in the morning after I wake up.
Well, all that changed after I moved to Las Vegas which was about 10 years ago. we moved to an apartment and I really felt like I was fenced in and my RLS got progressively worst. We moved to another house and, at least I could walk around the house when RLS was really bad. It got so bad that I asked the doctor for something and he did give me prescription but it didn't help at all. After a while I couldn't take valium or Tylenol, Anacin etc. because It worked opposite and made me worst so I know what not to take.
I finally did fine a doctor who knew about and prescribed meds for me which was Sinemet and after about 4 years I couldn't take Sinemet anymore because I was not able to even sit down or heaven forbid try to take a nap. I felt like I was going crazy my doctor put me on PERMAX (1 mg) and it helps for the jerks and restlessness, but I still wake up about 3 times a night so my next trip I will ask for something to help me sleep. I have taken hydrocodone and it really helps and I do sleep longer.
Mirapex or Requip work better than Permax. You may want your doctor to change you to one of these drugs.
Sent: Wednesday, March 14, 2001 8:05 PM
Subject: Do I have RLS?
I've been having what I think is restless legs for the past 2 years. I am a 52 year old woman, and started having this at about the same time I hit menopause. I just woke up one night with a weird feeling in both my legs and also in the lower portion of my trunk. The way I describe it is it feels the same way I feel if I am at a viewpoint at the ocean and you are way up high and you look down. It's like a real nervous, and fidgety sensation, as though everything is trying to pull upwards.
I know it sounds crazy, but I get it every single night, though some nights are worse than others. I wake up, stretch my legs, or get up and then it goes away, and I am able to go back to sleep. Sometimes I start to get the sensations shortly after I go to bed even before I go to sleep. But most of the time I am not aware of it until I wake up with it. Does this sound like it is restless legs? I do not have any jerking movements, just the creepy feeling in the legs and sometimes trunk area. Any comments would be appreciated.
You have given an excellent description of RLS. There is little doubt that you have RLS.
Sent: Thursday, March 15, 2001 10:49 AM
Subject: RLS treatment?
Thank-you for this site, when I found you I printed off lots of information and went right to my physician. I have suffered with RLS since childhood and am a 42 year old female. 5 years ago my early evening symptoms became intolerable so I visited my physician and began medications for RLS, 1 year of Dilantin, 3 years of Neurontin, then 1 year of Mirapex and for the last 6 weeks have been taking Permax.
You mention drug holidays often, which I have never done. The Mirapex helped for a while then I would increase doses as the effect lessened. I was taking .5mg of Mirapex 3 times a day because I thought I had daytime symptoms. During December, 2000 my symptoms became markedly worse and occurred earlier in the day. Increasing doses helped for 2-3 weeks and then were ineffective. I do have daytime symptoms when sitting for long periods of time, but as of the last 6 weeks since taking Permax only at night my daytime symptoms have almost disappeared! .
I now take (2) .05mg. tablets of Permax around 6:00 in the evening, my symptoms start early evening and once I get to sleep they usually don't occur throughout the rest of the evening. Permax helps but I still get restless through the evening . Sometimes walking/standing helps but not always. I also experience nausea with the Permax but have been told this is an extremely low dose of Permax. I would love to be able to plan night-time trips , but I avoid anything that means sitting at night.
Should I attempt to increase the Permax until my symptoms disappear? How often should I do a drug holiday? Could I ever try Mirapex again at a low level with holidays? Looking back at my Mirapex use over the last year I feel I medicated through the day without needing to. My physician is learning with me through the use of your website and I thank-you for being there for those of us who suffer with RLS. I did visit a neurologist 4 weeks ago upon the advice of my physician and the neurologist did not offer much hope, I feel I have better advice from this site.
He suggested I try to back off of the medicine through-out the day, and try to live with the disease, so therefore I tried Permax only at night. He did not realize it came in .05 doses. We did do an iron level 1 year ago and I was low and for the last 2 months I have tried to take a multivitamin with iron daily. I would love to take as little medicine as possible, so I am thrilled to be back to 1 dose of Permax for RLS daily.
Whatever advice you can offer I greatly appreciate. Thank-you,
Cindy K./ PA
Permax or Mirapex should only be taken 30-60 minutes before the RLS symptoms occur. If you do not have daytime problems, there is absolutely no need to take these medications before the evening.
Generally, no drug holidays are needed for the Parkinson's disease drugs. You may have been taking too much Mirapex (and too often) which may have accounted for your problems. If you are getting significant nausea with Permax, then increasing the dose will worsen the nausea and therefore limit its use.
You might want to try Requip, but use it at the lowest dose possible and only 30-60 minutes before the usual times that the RLS starts to act up. You should be able to control almost all of your RLS symptoms without feeling drugged or getting tolerant to the drug.
Sent: Friday, March 16, 2001 1:24 PM
As most of us on this site, I have suffered from RLS for years. I have been through all the drugs, believe me. Right now, I am using Ultram with more success than I had before. I have been using it for about 3 years. now, and only upped the dose once, about a year ago. My question is- Is Ultram physically addictive? I know it is not a narcotic, but I get conflicting reports and info on that point. I know there are some people who "like" it a little too much, but as far as the RLS, it is helping me immensely.
I take Klonopin and trazadone at night, but the Ultram is for the day. I get RLS in my arms, back, trunk and legs. we all know what a nightmare it is.
Donna L. M.
Ultram is not addicting in most RLS (or other patients), but a small minority of people who use the drug will get addicted. It is very hard to predict who will get tolerant and addicted to Ultram, but if you can keep the dose low and steady (as you have done), the chances of getting addicted are extremely small.
In general, Ultram is much less addicting than the narcotics. This may no be very consoling to someone who has already gotten addicted to the drug, but after prescribing Ultram to a lot of patient's, I have found it to be relatively safe if used as described above.
Sent: Friday, March 16, 2001 1:56 PM
Subject: Cure for me...
I'll try to be brief (hard for me), I found your site quite by accident searching for allergy prescription info.
I suffered from RLS increasingly up until about a year ago. I know I have what everyone else who has this difficult to describe condition has. As any sufferer knows, talking to another, "Yeah, that's it!!". My mother and sister have it, predominantly in the ankles they say.
I am now 39, 6' 3" and about 190 lbs. I play rigorous racquetball about once a week or more and am very active. A few years back, my symptoms were getting steadily worse. The restless legs that started just as I was falling asleep and kept me awake for about an hour, then I would fall asleep and be fine the rest of the night. But the first hour was hell. I used to dread going to bed, knowing I was going to have this "torture hour" before I could fall asleep. The only relief I could get was if I sat in a hot Jacuzzi just before bed, or sometimes if I lay on my legs folded under me (like an egg face down). That would afford some temporary relief.
Anyway, I did some reading on the net and concluded that while many others suffered from this, there was no one cure for everyone, not even a majority. But I struggled to determine what might have been possible lacking from my diet. Realizing I had all but stopped drinking milk for fat-reduction reasons, and that others had had success with calcium, I gave it a try. That and I switched to decaffeinated Coke, which I would drink some of just about every night.
The calcium did it for me. I know this is the cure for me because if I get off the 600mg a day regimen for 3-4 days, the RLS comes right back. Then I need to be on it for 3-4 days before it will go away again. I keep my calcium on my desk at work (although I have some at home too) and take it everyday. But on long weekends often forget to take it at home, and I know I have this 3 day "grace period" else it will catch up to me.
Anyway, I just thought I would pass that along. calcium has conclusively worked for me....
John H, Marlboro, MA
Thanks for your information on how you have helped your RLS problems.
Sent: Friday, March 16, 2001 8:15 PM
Subject: Sonata (zaleplon)
My doctor here in Canada gave me 10mg pills of Zaleplon but I forgot to ask if these were addictive or not. I have been taking 30mg of Restoril along with codeine and trazadone for my RLS, but I can't take the Restoril without feeling like a total zombie the next day. And of course I do not take the Restoril every night because of the habit forming properties of this medication.
Sonata (zaleplon) is thought to be non-addictive, but it has only been on the market for a couple of years. I still caution either intermittent use of the drug or regular drug holidays (2 days off every 2 weeks) to prevent tolerance/addiction from occurring.
Sent: Saturday, March 17, 2001 10:21 AM
Subject: RLS - of course Ah, I finally know what it is...
My husband and I call it "leg thrashies". It drives him nuts and prevents us from sleeping in the same bed. All my life I've been fidgety while sitting through religious sermons, lectures, long car rides, etc. which were/are pure torture. I thought I'd outgrow this as an adult, but it's worse. Unfortunately it's a behavior that children - and adults at times - get scolded for...as if they can help it.
Generally during the day I'm most aware of it in my feet and ankles...but it now at night it also affects my abdomen and my back, up and down my spine, as well all my legs and just as I'm drifting off to sleep I'm grabbed with an uncontrollable need to move, writhe, stretch, etc. I have some pretty weird sleeping positions which help at times by forcing my limbs into a position of a full stretch.
I slept 5 hours in the last 48 which caused me to get on the internet and I happily discovered your site. Thank you so much for the help...it gives me somewhere to start as it looks like this problem only going to get worse with age.
Speak to your doctor about starting Mirapex or Requip which should resolve your symptoms. A sleeping pill (such as Ambien) used on and off may also be helpful.
Sent: Sunday, March 18, 2001 10:31 AM
Subject: Neuropathy and RLS?
I have recently added leg and arm pain (dull, achy) to my RLS problems. The Mirapex .125 has pretty much alleviated the night jerking but insomnia continues. The neurologist I saw stated I had moderate to severe neuropathy in my legs and feet but offered no treatment except the Mirapex. Any suggestions? I have been switching back and forth between Klonopin and Ambien for the insomnia but it scares me to be dependent on this.
Thanks for any help.
If the neuropathy is different than the RLS (does not occur at rest and is not relieved by movement), then treatment may be quite poor (or totally ineffective). Alternating between Ambien and a shorter acting benzodiazepine such as Xanax, instead of Klonopin, may be better for your insomnia.
A Reply from Joan B.
Sent: Sunday, March 18, 2001 12:48 PM
Subject: Re: Neuropathy and RLS?
Thanks for the prompt reply. I am pretty discouraged after the last few nights. The neurologist I saw stated that I should not need any meds to sleep. The meds I mentioned came from my local physician who does not appear to have much understanding of RLS even though I had the report from the neurologist mailed to him with literature regarding the problem.( He was dead against me taking Mirapex)
Most all of my symptoms occur at rest at night. I have suffered from insomnia most of my life and on reflection, probably the RLS also, even as a child. But all this exacerbated when I began treatment for high blood pressure and had to have angioplasty with two stents. I have finally talked my doc into changing my BP meds from calcium channel blockers to more agreeable meds for my RLS which helped some and I have cut out other things such as Benadryl. I am attempting to increase my exercise (treadmill and stretching mostly) and wondered if that has caused the aching legs and arms.
I never had this before except when I was a child (they called it growing pains) I remember crying with back then too. How do I find a doc who is knowledgeable and willing to prescribe proper treatment? I'm at my wits end. I live near Memphis TN. I also have read that Ultram is non-narcotic that can be used for pain? The doctor who prescribed the Klonopin has moved his practice and I don't think my local doctor will prescribe benezodiazapines in any form. I'm sorry if I sound like I'm rambling on but I want to continue working (I'm 66) and otherwise quite able to work....but not without sleep or more aptly rest.
If your so called neuropathy pain does occur at night and is made better by movement, then consider increasing your Mirapex (you did not say what dose you are currently taking) to relieve the possible residual RLS symptoms.
As you may have had RLS for many years, you may have a conditioned insomnia which may need a sedative medication (Ambien alone, which is not a benzodiazepine, with regular drug holidays should be very safe) to help you sleep.
Ultram can be used for pain, but should also be taken carefully as a small percentage of patients may get addicted to this medication.
The best way to find a doctor who is good at RLS is to check with others. If you do not know of anyone with RLS, check out the RLS Foundation and go to their support group section to find one near you.
Sent: Monday, March 19, 2001 3:19 PM (see March 6, 2001 above for previous letter)
Subject: Dosage of Mirapex?
I am very excited to try my first dose of Mirapex. I wrote to you a few weeks ago at my wits end and you recommended I ask my Dr. for either Requip or Mirapex. Today was my appointment, and hopefully tomorrow begins my salvation. Although my Dr. was willing to give this a try, I was under the impression that this was a bit of an experiment for him too. He prescribed Mirapex for me,but wasn't sure what dosage to start me out at. The tablets I have are scored .25MG. Is this a good starting point or should I try only half ? Or should I try two?
I am also, naturally curious as to what to expect. How soon should I see relief? What side effects can I expect to experience? I have a job which requires a considerable amount of concentration and decision making. Will the Mirapex slow me down mentally?
Thank you again for setting me on a path that might change my whole life, and thank you in advance for any advice you can give me on the questions above.
Laura J. D.
Normally we start with the .125 mg tablets (you can break the .25 mg scored tablets in half) 30-60 minutes before bedtime or before your RLS symptoms generally start. I suggest that patients increase the dose by .125 mg every 5 days if needed until the RLS symptoms are gone.
Relief usually comes with the first dose (partial or complete relief), but if not, the dose is simply increased slowly until symptoms are gone. Most RLS patients have few side effects at the low doses used for their treatment compared to the high doses used in Parkinson's disease. It should not slow you mentally, although there has been a warning about sleep attacks when taken at more than 1.5 mg per day (6 of the .25 mg tablets).
For more information on Mirapex, click onto our RLS Treatment Page.
Sent: Monday, March 19, 2001 10:14 PM
Subject: Reply to Jeff C.
I too have been suffering with painful, red hot feet! Also, my feet seemed to start hurting me in my mid twenties. I am now 41 and sometimes I feel like I want to cut my feet off. My doctor has told me I suffer from RLS as well as arthritis. Sometimes when my feet are burning, especially in the summer! I want to put an ice bag on them or run them under freezing cold water. However, it's not only cold, it's painful to my feet (and hands), so either way they HURT! Most often they are red and burning but sometimes cold and purple and I feel as though my skin is so tight from my calves to my toes. My hands also turn red and seem to throb with pain sometimes and very sensitive to the hot and cold. My finger tips turn white sometimes when they are cold.
As I sit here now and write this, my FEET ARE KILLING ME! You're not alone.
It sounds as if you have Raynaud's disease, not RLS. This is a disease where the blood vessels in the hands and feet spasm (causing the white hands, pain, and tingling) then dilate (causing the red, hot hands). There is treatment for this condition although patient response can be quite variable.
If your regular doctor cannot help you, see a rheumatologist for help.
Sent: Tuesday, March 20, 2001 7:40 PM
I suffer from the same general symptoms as most postings already described. I am essentially blazing new ground with my doctor in experimenting with various medications. I have been through Sinemet, which caused "rebounding" that was intolerable. For the last year, I have been on Neurontin at a dosage of 3 of the 400 mg tablets per day. For the most part I have been satisfied with the relief of the classic symptoms.
However, I experience side affects which are becoming serious problems. Firstly, I have gained 30 pounds and have not been able to shed it using a number of disciplined regimes. Secondly, nausea is increasing causing problems that now require taking another medication. Thirdly, I experience an absolute exhaustion, to the point I need to continually just lay down and rest. Fourthly, I seem to have mood swings, of which most have are on the downside.
Admittedly, this is probably a form of depression. Finally, after my last dose of Neurontin, (9:00pm), causes me to get sleepy just at bedtime. However, about an hour later I wake and need to get out of bed. This pattern repeats 3 to 4 times a night.
The question is: with Neurontin, do these side affect continually increase with time? They certainly seem to. Is they another medication that I should try that will give me an equal amount of relief, yet reduce the side affects? Are these textbook side affects that most patients realize?
The side effects of Neurontin can be quite variable, from almost nothing to intolerable. Fatigue/sleepiness is not uncommon, but weight gain, depression and nausea are not very common.
Although some RLS specialists prefer prescribing Neurontin for RLS, I very much prefer Mirapex or Requip as the side effects are less and the relief of RLS symptoms are generally better.
Sent: Sunday, March 25, 2001 9:03 PM
Subject: Drowsiness in the daytime with Mirapex ?
I am a long time restless legs sufferer, and have been taking 3 Mirapex pills (.125) for about 3 years now. Lately, however, I have been feeling very tired and drowsy, almost as soon as I get up in the morning and lasting all day. I went to my local doctor who tested my blood and stools, but all was normal.
Could I be having a side effect from the Mirapex, and if so, can you recommend another medication for my restless legs? I am 75 years old and in good health otherwise with no other health problems.
Thanks for any help you can give me,
It may be a side effect of Mirapex. The only way to be sure would be to stop the medication and see if the daytime drowsiness resolves (assuming that you can sleep without Mirapex). Requip may be just as helpful for your RLS, but may not cause similar daytime problems in any given person.
Sent: Monday, March 26, 2001 4:44 PM
Subject: diagnosed with severe PLMD
I just received my sleep study results from the specialist. The test showed severe PLMD, very minimal sleep apnea. Of course, I had no bed partner for observation purposes so was surprised to hear this diagnosis. I was asked to take a trial dose of Mirapex for the next 14 days. My dosage is 0.25 mg for 2 days and if no adverse affects continue on 1.0 mg for 12 days.
My concern for doing a sleep study was difficulty is staying asleep and some difficulty in falling asleep. Past history of drug abuse / depression and anxiety. I attribute my difficulty to falling asleep being generalized anxiety. For the past 14 months, after trying so many anti-depressants, I was placed on Adderall (long acting Ritalin) by my psychiatrist. This was after 3 or more years of various antidepressants which always resulted in increased daytime lethargy
Adderall helps me focus,complete tasks, and maintain better cognitive abilities when taking it. However my dose of 35 mg (daily dose) is effective in managing my add symptoms for only 6 to 7 hours post ingestion.(15 mg at 8 and 20 mg at 11 am)
I have two questions:
First question: will Mirapex , if effective in improving PLMD on the sleep study, will it provide overall sleep quality? I have an appointment this Wed with my psychiatrist for routine Adderall medication follow up. She was glad that my family internal medicine physician ordered the sleep study. I intend to inform her with the results as well as the sleep physician sending her the results of the study via mail this week
My second and last question:
If I do indeed have PLMD and ADD (inattentive type) with aspects of depression and anxiety, can Mirapex and Adderall be given together and yet have the main result of overall sleep quality ?
You are asking some very relevant questions, but I need to know more information before giving you a full answer. The most important thing that I need to know is how many PLM's did you have per hour and how many of those caused arousals (the PLM arousal index)?
If you are having a lot of PLM arousals, then treating them (with Mirapex or other medication) should eliminate the need for a daytime stimulant medication such as Adderall. Once the PLMD arousal problem is resolved, you should sleep well and not have any daytime lethargy or problems concentrating (unless you have another superimposed problem such as Narcolepsy, which would be unusual).
Generally, a low dose of Mirapex (between .125 mg and .5 mg) is all that is needed to treat RLS/PLMD. If needed, Mirapex and Adderall can be taken together, although this is a very unusual combination as it is very uncommon to have PLMD and ADD together (as the ADD is very likely caused by the PLMD problem in patients with severe PLMD with arousals). Adderall also may increase the level of anxiety in patients who take it.
A Reply from Charmaine B.
Sent: Wednesday, March 28, 2001 3:42 PM
Subject: Re: diagnosed with severe PLMD
I just received the report from my polysomnogram (sleep study).
"The findings were consistent with the diagnosis of Periodic Limb Movement Disorder of sleep. She experienced leg movements at a frequency of 9 per hour associated with EEG arousals and 108 that were unassociated with EEG arousals. She had one prolonged awakening for over 1 1/2 hours that was initiated by her significant leg movement. This is consistent with a a diagnosis of PLMD. As you know, her history suggests Restless Legs Syndrome as well.
What would that be on the PLM arousal index you mentioned? And the significance of the index. Please comment. You also mentioned in your e-mail that "it is a very unusual combination as it is uncommon to have PLMD and ADD together". Any more comments?
I truly had trouble with school and work positions. It is very difficult to absorb and concentrate. I feel the best I have ever felt on Adderall. As I said in my e-mail it helps me focus, complete tasks and maintain better cognitive abilities. Having this polysomnogram did shed light on many subjects, however, I am a little confused. Am I being treated for ADD and not really having ADD?
A words of insight would be helpful.
The PLMD arousal index in your report is 9 (index means how many PLM's caused arousals per hour). That is actually a mild amount of arousals from leg movements and should not be responsible for daytime problems. Your daytime problems may be more related to your prolonged awakenings from these PLM's.
ADD is a syndrome, not a disease. This means that we do not know the cause and it may in fact be caused by several other diseases (which are yet to be defined). Your ADD symptoms of lack of concentration and ability to think may be due to your PLMD and your lack of sleep due to awakenings. If your nighttime sleep is improved, the so called ADD symptoms may disappear and you may not need any stimulant medication.
A simple test would be to take a bedtime sedative such as Ambien (with or without Mirapex) and see if this helps you sleep and daytime problems.
Sent: Tuesday, March 27, 2001 11:42 AM
Subject: Mixed advice
In reading over the latest version of Living With Restless Legs, and then going back to the two earlier editions, it suddenly hit me that in every case Klonopin is shown as the most commonly prescribed treatment within the sedative class. Without any serious precautions. I have been under the impression that Klonopin is perhaps the most addictive of that class and that, although it used to be the one taught medical students, it is now considered too risky and that, if sedatives are felt to be appropriate, others of the group will be chosen. Please clarify this point. I have been inclined to warn everybody not to take Klonopin.
In somewhat the same connection I am finding that my use of Mirapex for PLMD only is somewhat less effective than it used to be. I now find that, if I am at rest at ANY time of day or night I need to have taken what in my case is a low dose (.25 mg) well in advance (my nighttime dose is 0.5 mg and it must be taken 3 hours prior to bedtime). Those dosages have not changed i.e. I am not taking more at any given time. This of course brings up the question of augmentation/rebound which was originally not thought to be a problem with Mirapex but which I now see as a question in our group discussions.
I did try making a cold turkey switch to Permax a few months ago, thinking that this could be done in equivalent dosages, but didn't sleep at all that night! So much for that kind of drug holiday. Between that disappointment and the long time it takes to work, it is a temptation to augment the night Mirapex with a small amount of sedative or pain reliever, etc. What would you suggest, and would holidays be needed for whatever is chosen?
Finally, my wife has been undergoing "light chemo" and radiation as a precautionary follow-up to lung surgery. Although she has never experienced RLS before, she now is starting to get the feeling that her legs have to move during her attempt to sleep. Also a tendency toward insomnia. Have you run into this type of reaction to this type of trauma?
Klonopin is still the most commonly recommended sedative for RLS in the textbooks and publications. Other than the problem with addiction, the daytime sleepiness that occurs with this long acting medication is actually a much worse problem and concern. For these reasons, I never prescribe or recommend Klonopin. My name was put forward by the RLS Foundation to the NIH to help re-write some of their RLS publications (and I certainly would have done my best to correct this issue), but I was not chosen to be included in this project.
Augmentation and rebound, which are very common with Sinemet, are very uncommon with Mirapex or Requip. There is also no reason to take drug holidays from Mirapex, Requip or Permax for the vast majority of RLS sufferers. A few patients will get tolerant and these often do well alternating amongst these 3 drugs. For Permax, .05 mg is roughly equal to .125 of Mirapex or .25 mg of Requip.
Lung surgery certainly could be considered a significant trauma which could trigger RLS. I doubt that chemotherapy would induce RLS, but as we do not know the cause of RLS, anything is possible (but I have never heard of this before).
A Reply from Newt H.
Sent: Tuesday, March 27, 2001 9:34 PM
Subject: Re: Mixed advice
Thanks for the advice. Re the question of chemo or radiation triggering RLS , I have just discovered that Benadryl was given prior to the Taxol and of course Benadryl is known to bring on RLS and PLMD attacks for those of us who already suffer. It is interesting that Benadryl might initiate RLS for those who have no history of the problem. What do you think?
Coming back to my question of switching from Mirapex to Permax, I substituted 0.20 mg of Permax for the 0.5 mg of Mirapex, without tapering off the latter, and could not sleep that night. Should this have occurred? The purpose of the exercise was to see if by any chance I had become tolerant of Mirapex, so would try Permax for a few weeks (or whatever), and then perhaps switch back and forth. Several of our support group members have also questioned whether Mirapex might need a holiday, so my question is a broad one.
Benadryl is one of the most commonly prescribed antihistamines, so its side effects are very well known. It is therefore quite unlikely that it causes RLS in patients who do not already have this problem, but it certainly worsens existing RLS.
The dose of Permax you took is approximately equal to your dose of Mirapex, but these drugs do not always work the same for everyone. There can be quite considerable variation in one's response to any of the RLS drugs, even those in the same class (I often see patients who respond quite differently to Requip and Mirapex which are quite similar for most).
Unless you are experiencing a significant and continued need to increase your Mirapex, it is very unlikely that you are developing tolerance to the drug, so there is no need to experiment with drug holidays.
Sent: Wednesday, March 28, 2001 12:13 AM
Subject: Frustrating nights with RLS.
I actually couldn't sleep (again) tonight because of my restless legs, so I got up and did a search on the internet and found this website! It's a little after midnight, and I still feel the weird crawling, itchy, achy feeling all down both of my legs and calves, even when I'm standing up. I remember having achy legs at night when I was tired as a child, and that would occasionally keep me awake. I'm now 34, in fairly good health, and a registered nurse married to a physician.
I actually looked in my medical dictionary for something else about a year ago, and accidentally stumbled upon restless leg syndrome! I didn't even know there was a name for what I had been experiencing! I do notice that it is much worse for me when I am stressed out or extremely tired, and then it's such a frustrating feeling being so exhausted and not being able to fall asleep. I just want to climb the walls, it drives me crazy!!
This website and the letters I am reading from other sufferers is a great help.
Have your doctor (or husband) prescribe Mirapex or Requip (or Ambien if you have this just some nights) so that you will not have any frustrating nights from RLS.
Sent: Wednesday, March 28, 2001 4:14 PM
Subject: I need advice!
I am soooo glad I found this site! Perhaps some of you can help me. I have known for years that I suffer from RLS. Beginning last spring (right around the time I began taking antidepressants! hmmm), I returned to the annoying childhood habit of "thumping" my feet on my bed at night whenever I turned over onto my stomach. Additionally, I now am continually rotating my ankles and crunching my toes, creating incessant popping noises. By the time it's time to get up in the morning, my feet are actually SORE ALL OVER from all of the constant flexing, rotating, and thumping! I have been concerned that all of this movement is doing permanent damage to my feet, but I can't seem to find any information on the long term effects of excessive "popping".
For awhile, I tried wrapping my feet together in an Ace bandage so that I would actually be unable to move them at night. However, this proved problematic whenever I had to go to the bathroom, plus God forbid there might be a fire...! The only other thing which seems to completely restrain my feet is ROLLER BLADES, and yes, I have actually gone to bed wearing them. My feet remained still, but my boyfriend wasn't too fond of the treadmarks which were being left on his body overnight.
My doctor prescribed some sort of muscle relaxant, but even taking just 1/2 of a pill before bed had me feeling knocked out throughout the next day, so I stopped taking it. I do not remember the name of the drug, but I plan on looking into some of the Parkinson's drugs mentioned in other letters submitted to this site.
So, to recap, my questions are:
1. Can anyone recommend a device which works well at restraining the feet during sleep?
2. Does "popping" result in any serious or long-term effects I should be aware of?
Thanks ever so much!
Popping joints does not seem to be responsible for causing damage in the long term or short term.
There are no devices that I know of that are made to restrain legs/feet during sleep. As you have already observed there are considerable downsides to any restraining devices (please get rid of your rollerblades in bed). One simple solution to not bother your bed partner is to get twin beds and move them about 6 inches apart when going to sleep.
A better way is to treat the actual problem (if it is still bothersome) is to use a bedtime sedative (Ambien, Xanax, etc.) or one of the newer Parkinson's disease medications (Mirapex or Requip).
Sent: Wednesday, March 28, 2001 3:44 PM
A friend of a friend has RLS and their family is beside themselves with worry, concern, and fear. I am looking for any information at all that may help these people. I believe that his case is "special" because he also has a heart condition and the "twitching" at night has gotten so severe that he can't sleep.
His doctors advise him that if he doesn't get more sleep his heart will fail.Please help me in anyway to put his family and himself to peace and possibly cure, prevent or slow the problem.He is about 80 years in age more or less. Please help.
Concerned friend of a friend.
This should be an easy case to treat. Mirapex with or without a mild sleeping pill (such as Ambien) will most likely resolve his RLS. Check out our RLS Treatment Page for details on how to use these medications for RLS (which is quite different than for their original indication).
Sent: Wednesday, March 28, 2001 7:56 PM
Subject: Mirapex for RLS
First let me say I think your web site for RLS sufferers is wonderful.!!!! I began having these "leg sensations" about 1 year after I had back surgery for a ruptured disc (L4-L5).
I told my doctor.about them and he pretty much thought I was crazy, this has been 9 years ago and I have been suffering with this nightmare since.
Last June I began having tremors in my hands and saw a neurologist. She suggested I try Mirapex for these tremors although she didn't think it was Parkinson's. I found that the Mirapex seemed to help my RLS. I had been afraid to take a medication for something I didn't have and so I quit using it. My symptoms became worse.I then started the Mirapex again and have found that it has helped me a lot. I still have the RLS but if I take a Mirapex, I seem to have relief in about 15 minutes.
My problem is I still cannot sleep.I find I am becoming more and more depressed and want to know if there is something I can take along with the Mirapex to help me sleep? Also,can the ingredients in Mirapex cause an elevation in my TSH? I have a normal T3-T4 but the TSH is low.
Thank you for your time.
Mirapex is certainly a great drug for RLS as you have already found out. After years of not sleeping well, you may have a conditioned insomnia which may persist even after the RLS is treated. Many RLS sufferers need a bedtime sleeping pill (Ambien is a good choice) to help them sleep.
Mirapex does not have any effect on thyroid function (TSH, T3 or T4).
Sent: Thursday, March 29, 2001 10:22 PM
Subject: Bed Strategies
The roller blade letter made me laugh. I've had lots of experience over the years in trying to remedy the RLS and stay in the same bed with my husband. We came upon something that could help others. We have a queen bed, so I bought a king top sheet and split it down the middle. It has a common area at the end of the bed so you can tuck it in. I also split a blanket the same way. It has solved so many problems.
My RLS and PLMD were responsible for pulling the sheets away from my husband all night long. Now we have our own "area of bedding" and we're still married and still in the same bed. Good luck to you all !
Sent: Friday, March 30, 2001 9:07 PM
Subject: Gingko Biloba for RLS
Just thought I'd drop you a line to let you know of a personal experience concerning RLS. My uncle is 78 years old,and has suffered with RLS for many years.None of his doctors have been able to offer any relief. I have an association with Dr.Earl Mindell, the author of the Vitamin Bible.
Dr.Mindell suggested a product of his called Memory Mate,which is a Gingko Biloba based product.In less than a week , all of the RLS symptoms are gone.Completely. I thought this might interest you.
Several people have written of success with Gingko Biloba like products, but unfortunately, this helps less than 1% of RLS sufferers.
Sent: Friday, March 30, 2001 8:20 PM
Subject: Dosage of Requip for RLS
Again, thank you so much for this helpful site.
Since writing you and hearing back, a few months ago, I have been taking 0.25 mg Requip, starting with one pill and increasing to two. I seemed to be having more problems so increased it to three pills for a week, but feeling that perhaps I was pushing the limit, I have gone back to two. However, my legs have been starting to be quite extreme in the early evenings any more, so that sitting is very limited. Has there been any reports on Requip actually causing increased discomfort? An hour or so after I take my pills, I can go to sleep, only to be wakened in the night for a fairly short while, and again much earlier in the morning.
I reread the information on Requip and what I understand is that I may take this dosage three times a day?? So perhaps I may take a dose after supper time and again when I go to bed, and again in the night? Is that an option, I wonder?
Darlene J H
You certainly could take another pill 30 to 60 minutes before the onset of your early evening RLS. It would be better to take an extra pill at bedtime, rather than wait until the middle of the night to take the pill. It is better to prevent an awakening rather than to try to treat it once it happens.
The average dose for most RLS patients is 2-6 of the .25 mg Requip tablets, so you are not out of line.
Sent: Friday, March 30, 2001 10:06 PM
Subject: Pillows for RLS.
I am a 58 year old male and have suffered with RLS for about 20 years. It is mostly in my thighs, but sometimes also in my feet. It has progressed to the point that I now take Klonopin (Clonazepam), Neurontin, and Hydrocodone at night.
I agree with the person who says that antihistamines make the symptoms worse. Also motion-sickness medicine, which is chemically related, One thing that has helped me over the years (and I haven't seen it mentioned anywhere else) is that I sleep with pillows (started with one, now two or three thick ones ) between my legs.
You might want to discuss starting Mirapex or Requip with your doctor. This may help you eliminate or markedly reduce the need for Klonopin and hydrocodone.
Sent: Sunday, April 01, 2001 1:45 PM
Subject: Iron for RLS
I am taking iron supplements because my ferritin level was 29. Of course, I am hoping this will help my RLS problem. Do you have a suggestion for what kind of iron to take because the iron is constipating? Also, I would suspect that taking iron should give one more energy, however after much experimenting I am about convinced that the iron I am taking is causing daytime fatigue. Have you hear of this side effect?
If your hemoglobin (the complex that makes red blood cells the color red and carries oxygen) is normal then taking iron simply increases your iron stores (as measured by the serum ferritin level) but should not give you more energy. If your iron stores get very low, then the hemoglobin will get low and adding iron will make you feel better.
Other than being constipating and sometimes irritating your stomach there are few side effects with oral iron therapy. There are 2 forms of iron; ferrous sulfate and ferrous gluconate. The only difference is that the gluconate form is often more gentle on the stomach than the ferrous form, but I believe they are equally constipating. Taking more fiber (Metamucil, Citracil, etc.) often helps the constipation problem.
I have never read or heard of iron causing fatigue.
Sent: Monday, April 02, 2001 5:09 PM
Subject: RLS relief!!!
I first noticed the onset of RLS when I was 15 years old and sitting in a movie theatre seeing the movie "Born Free". I roamed up and down the aisles, utterly humiliated. It re-surfaced when I was in my 20's and it has been ruining my life ever since. Many nights I have wanted to die and actually fantasized about having my legs amputated, except my fear is that I'll have phantom restless legs.
I tried several medications to no avail until I finally found relief with a time released pain pill called Oxycontin. Yes, they are addictive and cause constipation (which I control with Milk of Magnesia) but it's a small price to pay to have my life back. Try it-it works!!
We have many patients on various narcotic medications, including OxyContin, but only after we have tried the Parkinson's disease medications. Mirapex and Requip work as well (or better) and do not have any addicting properties.
Sent: Monday, April 02, 2001 6:31 AM
Subject: Mirapex question
I have been on Mirapex (.125 at 17:00 and 22:00) with great results. However, out of the blue I'm having some symptoms that are listed as possible side effects for Mirapex. Around the first of the year I started experiencing muscle and joint pain in my right index finger. The most accurate description I can give is that, when the symptoms are present, it feels that the joints are "loose" and I have no strength in that finger. Four weeks ago, similar symptoms started in my left elbow, and now when they are at their worst it is classic "tennis elbow". No strength, a feeling of looseness in the joint itself, and unable to completely extend the arm out straight. Now, I'm feeling twinges in my right knee that seem to be the onset of what I've seen thus far in the other joints.
These are not injuries, and are spread across various joints. However, the dosage I'm taking is so very low, and the fact that these problems suddenly occurred after well over a year on the drug have me doubting that this is the problem either. I have an appointment with my orthopedist in two weeks, but wanted to check here first. Frankly, Mirapex has been so good for me, that I would endure the muscle pain rather than go back to the misery of RLS.
Do you have any historical data (or outright guesses ??) on this muscle and joint soreness side effects ???
As always, thanks very much!
Anything is possible with any drug (as far as side effect are concerned), but I doubt that Mirapex is the cause. You are on an extremely low dose of Mirapex and I have not seen your particular side effects even on Mirapex doses 10 times higher than your dose.
The only way to tell for sure would be to stop the drug and see if all your symptoms go away quickly.
The odds are that you have a separate problem. The best doctor to see (other than your primary care doctor) would be a rheumatologist who specializes in the medical diagnosis and treatment of joint and muscular diseases (as apposed to an orthopedic surgeon who specializes in the surgical treatment of the same problems).
Sent: Monday, April 02, 2001 10:57 AM
Subject: RLS and diabetes.
I was just looking for any info for help with my restless legs syndrome. I know now that I have had it most of my life. It is somehow reassuring that I am not alone. I am also diabetic, being diagnosed in 1995. Now I have diabetic nerve damage in my feet which causes burning, stinging, numb feelings, sometimes my feet are so touchy I can't even stand cover on them. I have been taking Elavil 200 mg at bedtime.
I have had lots of trouble on longs rides, Or sitting too long where I have to get up and move around to find relief. I blamed it being worse on my diabetics because diabetes has a nasty habit of affecting EVERYTHING IN YOUR BODY! Although I don't know this for a fact.
My feet swell and it seems to be worse when my feet do swell. I have trouble all throughout out the day but worse at night when I am trying to get to sleep. I take all my meds around seven and I tend to go to bed early because I think that by doing so it makes up for the sleep I will miss through the night. I have had it so bad at night that I actually go for a walk in the middle of the night.
I finally fall asleep but I don't stay asleep, due to it being 5:30 my usual wake up time to be up to go to my 7:00 job. I must sleep better at this time of the night because I find it very hard to wake up when I may well had been up at 3:30 and restless. I never get enough sleep. My bed covers are always a mess and have been known to be totally off the bed in the floor, then I have to get up and make my bed up so I can try to sleep. I have a very bad memory thing now that is so bad I forget things from 1 minute to the next. I hate to sound like the big crybaby, poor little me but this is a real condition that evidently affects a lot of people.
My doctor prescribed "clonazepam" and I haven't felt much effect yet though I have only been taking them for 4 days. I wonder how many people with this condition have diabetes or any other medical condition that may aggravate RLS.
I also wonder if any one else has trouble with nail fungus. I have it in both my big toes. I does not hurt but looks really gross? Sorry for such a long letter. It is so hard telling people how uncomfortable you are cause they seem to think that it is no big deal. I feel for all people that have this condition. Keep hoping for a breakthrough that will give us our lives back. I can't even attend church or other sit-down things because of this.
Klonopin (clonazepam) is the first medication that most doctors who are not RLS specialists prescribe for RLS. Ambien or even Xanax are much better medications for sleep as they are metabolized quicker so that they will not cause daytime sleepiness.
The best way to treat RLS is with Mirapex or Requip. Most general doctors will not have heard of these drugs and will likely be quite reluctant to prescribe them, but they work great for RLS and would likely take care of your RLS problems.
About 30-40% of RLS patients have mild neuropathies (nerve damage) when tested, but the significance of this is not known. There is no known association of RLS and diabetes or toenail fungus.
Sent: Monday, April 02, 2001 4:11 PM
I have been suffering from restless legs for all my life and have been to the international sleep clinic 8 times. I used to self medicate with anything that would make me sleep and in the past few years have being put on quinine, selegiline, clonazepam, Lorazepam, codeine, magnesium and also calcium. Nothing has worked! I was put on a pain killer one year ago for sore bones and all of a sudden I was sleeping at night and I could actually sit for lengthy periods at a time. My sleep efficiency test improved from 76% to 94 %. I could not believe it!
I researched on why I could sleep even though the OxyContin didn't make me tired. There is a question about the addictive nature of the drug. Well, if addictive means that I can sleep and be alert with no leg movement during the day, then I guess I am addicted to the fact the for once in my life I don't want to rip my legs and arms off.
Sometimes I would try to sleep curled up in a ball to relieve the tension. In addition to all of this, I suffer from post trauma and panic disorder and seasonal depression. I was able to cut my medicines for them down by 75%. This is something I have not being able to do since I was diagnosed. Since opiates are a taboo in society, there is not much research or information on this, so I had to use the internet. I found out for RLS sufferers that have mental disorders, like I do, there is sufficient research to prove that opiates will also help the depression.
Take care all,
It is not understood why opiates work so well for RLS, but they certainly do. The problem with addiction is that tolerance to the drug comes with this addiction. When tolerance occurs, you need higher and higher doses of the drug until even very high doses do not help.
It is hard to predict who will become tolerant and at what dose. The best way to prevent addiction/tolerance from occurring is to keep the dose of your drug at the lowest possible (just to relieve 90-95% of your symptoms, whether it is RLS or other pain). Taking regular drug holidays (2-4 days off the drug every few weeks) may also be very helpful to prevent addiction.
Mirapex or Requip may work as well as the opiates and are not addictive. We always try these medications first so as to avoid the need for opiates
Sent: Tuesday, April 03, 2001 12:22 AM
Subject: Switching between Mirapex and Permax
I must be one of the 15% you mention who find tolerance developing with Mirapex, and I have seen you often refer to alternating between Mirapex and Permax, perhaps with two month intervals. But when I tried a direct switch I couldn't sleep at all that night. Please clarify what you mean by "cross tolerance" and its application here. Does one need to taper off Mirapex (and supposedly Permax when going back to Mirapex)? On the occasion referred to, I did use equivalent dosages i.e. four of the 0.05 mg Permax for the one 0.5mg Mirapex I take prior to bedtime. I would like to try this switching approach before adding Ambien or Xanax or Ultram.
Note that I also am taking 0.25 mg of Mirapex on an as needed (or anticipated) basis during the rest of the day, whenever I am relaxed for long periods. Permax might be particularly good at these times since it is faster acting than Mirapex. Or maybe these would be the times to look at the other classes?
Generally, one does not need to taper off of Requip or Mirapex when changing to Permax. Although you have the right equivalent dose of Permax to replace Mirapex, that is just the average and many patients may need more or less (in your case, you may need more). Permax in general does not work faster than Mirapex. This is likely an individual phenomenon.
Another thought is to switch to Requip instead of Mirapex.
Sent: Wednesday, April 04, 2001 7:03 PM
Subject: Marijuana for RLS
We have been using medical marijuana, eating it for relief. Not only does my afflicted wife sleep, she doesn't kick me out of the bed anymore. She awakes without the hung over feeling of narcotics or other drugs they tried on her for years. She has been diagnosed with periodic limb movement disorder (PLMD). She was previously incorrectly diagnosed as having narcolepsy and wrongly prescribed Dexedrine for 2 years, which has just been found out to have done permanent damage to her torso skeletal and muscle structure.
The state we live in has a medical law which gives an exception to current law to a qualified patient. Because her affliction is actually neurological and is seizure classified, she was able to qualify. How many more of you are out there who could really use something that works, something that doesn't do the same damage your current meds are doing to your body?
We have had several RLS/PLMD patients write us about the help that they are getting from marijuana. It does seem to help quite a bit. The problem is that it is unavailable legally in most states and even when available, may be hard to get.
The US government has prevented any long term (or even any recent short term) research studies on marijuana, so we do not know the side effects or complications from chronic use of this drug. There are several legal, well studied drugs that work great for RLS/PLMD and should be tried before going to marijuana (if available).
Sent: Wednesday, April 04, 2001 8:41 PM
Subject: Confused over 2 types of RLS pain/discomfort
I have been diagnosed with RLS a year ago though I now know that it has been coming on for approx. 10 years. My question is that it appears to be getting considerably worse very fast and I suspect I may have two different problems.
The pain that wakes me up so much lately is very very painful. It is more like I have my legs in a tight vice. From everything that I read, RLS is not usually described as painful at least not as painful as I feel mine is. When I was first diagnosed I had and still have the tingling, sort of numbing and a very restless feeling in my ankles and legs.
My neurologist is prescribing Sinemet and Requip. It appears to be taking care of that. I don't feel those symptoms even when I wake up from the other unless the pain is overpowering those symptoms. I hope you get to this letter. Thanks so much for your time.
Very sleepless in Middletown California,
The Requip and Sinemet seem to be taking care of your RLS symptoms. The other pain that you have does not sound like RLS (your guess that it is a different problem is likely right). RLS discomfort should come on at rest, make you want to move the affected limb, and you should get better (at least temporarily) when you do move the affected limb. If this is not the case then you do have two separate problems.
Your Sinemet dose should be kept under 3 of the 25/100 tablets as problems with augmentation and rebound can occur. Even better yet is to have your doctor control your RLS with Requip alone.
Sent: Thursday, April 05, 2001 1:16 PM
Subject: Looking for Relief
Three weeks ago I went to a sleep lab to be tested for sleep apnea, as I was not sleeping well and have sinus trouble. To the doctor's shock when he got the results he found that I have PLMD. I kicked 296 time and woke up 132 times in a 6 & 1/2 hour period. He was amazed at these numbers as he said they are high for someone my age. He gave me a list of web sites to read about the disease, which is when I discovered that I also have RLS.
I have had both of these for as long as I can remember. My mother & now my boyfriend have both said I kick. My mom said I have been kicking since I was an infant. Since I have had the RLS so long I have kind of learned to live with it. I never thought to mention it to anyone, even when it was so irritating I didn't know what to do. My doctor started me on .125 of Mirapex and told me to call him if it did not work. It worked for 3 nights when I got the BEST sleep I have ever had in my life. I woke up feeling refreshed, and while I was sleeping I actually had "normal" dreams.
My dreams have always been what I describe as "hallucinogenic and disorienting" Then I started waking up again at night , but I was not able to fall back asleep quickly as before. I was laying awake for up to an hour before I would fall back asleep. the doctor recommended taking two of the pills. That caused me to not fall asleep at all. I was up all night last night! Today he called in a prescription for Klonopin and I am hoping this will work.
I will GLADLY take any advice for non-prescription remedies that people have found to work. I also have asthma and am on prescriptions for that and hate to take more prescriptions than necessary. Also, I get sick really easy. If someone within 5 miles of me has a cold or the flu it seems I get it. I am wondering if this is because my body is "run down" and more susceptible to things since it is lacking sleep?
Sorry this is so long...I have so many questions and just want to get a good nights sleep. Those 3 nights last week when the Mirapex worked were absolutely wonderful.
Crystal Davenport, Age 22
Mirapex is the drug that usually works best for RLS but you may be sensitive to the medication. You may want to increase the medication by only 1/2 tablet every 5-7 days. Another option is to try Requip instead of Mirapex (it is a similar drug, but may have a different side effect profile). Klonopin is a very long acting drug and is associated with daytime sleepiness. We recommend Ambien as a much safer sleeping pill.
The combination of asthma and being run down may be leading to your frequent colds, but this is something that we really do not understand well.
Sent: Thursday, March 29, 2001 1:57 PM
Subject: RLS after laminectomy
I am a 73 year old female, and have just discovered your web-site, and the name for my problem. As a child, I used to get "leg pain", which my mother treated with alcohol massages, and attributed to growing pains. It eventually went away.
Last year, I fractured a femur in a fall, and they inserted a rod in the bone. After the surgery, I started to feel pain in my heels - nothing to do with skin, about which I was very careful. After some months, it improved. Then, my back, which has been a problem for 20+ years, started acting up seriously. An MRI showed I had severe to moderate spinal stenosis, added to what I already knew - degenerative disc disease. Since a previous epidural injection did not help, and physical therapy didn't either, I reluctantly decided on surgery, and had a lamenectomy, 2 levels plus some repair to a bulging disk.
About 3 months later, I started to get "crawly legs", causing severe insomnia. I read in your website that this can occur after a lamenectomy, and is also more common in people with fibromyalgia, which I have. I haven't seen a neurologist yet... I have taken Ultram and Vicodin for my other problems, but neither one helps the RLS. Sometimes a hot bath a bedtime will help, or tonic water.
The last few days (this all started about a month ago, the surgery was in December), it has spread to my back - shoulder area and buttocks. It starts in the late afternoon, and continues, on and off, until after midnight. Around 2-3AM I finally drift off to sleep, until about 7. Neither Xanax or Ambien helps much.
I haven't discussed this in detail, and appreciate this opportunity to do so. My surgeon's office is supposed to discuss it with their neurologist (HSS in NYC) and I hope to get a feedback in the next day or two. If not, I will make an appointment with a neurologist near my home. Or should I go to the local hospital sleep clinic? How common is the onset of RLS after this type of surgery? I hope to find a solution soon, as it is driving me nuts.
Thanks for your patience in reading this long rambling report.
There are no statistics available, but RLS worsening after back surgery is a common phenomenon amongst RLS sufferers. It is unusual not to respond to the pain killers, but everyone is different. Mirapex or Requip are the best choices for your problem at this point.
Neurologists or sleep specialists are both good for RLS if they have an interest and knowledge of RLS.
Sent: Friday, April 06, 2001 7:31 PM
Subject: RLS relief
Please do not make the same mistake that I made! After a torture filled night of severe Restless legs, I took Excedrin PM (it's all I had). It turned my case of RLS into the most intense restless legs that I have ever had. Tylenol PM and Excedrin PM exaggerates the condition ten fold!!! What I have found that works 100% is Oxycontin. Ask me if I care that it's addictive....After 30 years of sheer torture, taking narcotics with the risk of addiction is not even a concern. The narcotics can be controlled. RLS can't be controlled. I feel like living again. Without the narcotics life with RLS is no life at all.
We always warn our RLS patients not to take any medication with an antihistamine (which is in most of the over the counter cold remedies and sleeping pills).
We have no problems with using narcotics for RLS, but if you become addicted you also become tolerant to the medication and then the medication will not work even at high doses. Taking regular drug holidays may help.
Mirapex or Requip is often a better way to go as addiction does not occur and they most often eliminate the RLS symptoms and the need for narcotics.
Sent: Monday, April 09, 2001 8:43 AM
Subject: Night Sweats with Mirapex?
I am on about my third week of Mirapex and can happily report that my RLS is under control. I started with .125mg., increased it to .25mg., and now all is "well'. I can't truly say all my symptoms are gone, but they are now tolerable.
The last week or two I have been waking up 2-3 times a night with hot flashes or "night sweats". I was wondering if this could be related to the Mirapex. I am a 42 year old female, and have considered the possibility of menopause, but find it a coincidence that it started the same time as I began my new medication. Any thoughts?
I just read the letter from the "roller blade lady" and had to smile. I have a water bed and used to try to find relief by stuffing my leg as far between the mattress and the side board as I could get it. I can remember more than one occasion being in a hotel room trying to sleep with my luggage on top of my legs! It is so good to know there are people who understand what I've gone through!
Thank you so much for all your help,
You may want to increase your Mirapex (with your doctor's permission) to two and half to 3 of the .125 mg tablets to relieve all your RLS symptoms. I do not think that the Mirapex is causing your night sweats, but anything is possible. If you increase the dose and the night sweats get worse, consider changing to Requip.
Sent: Monday, April 09, 2001 1:50 PM
I am fairly young (22 years old) so I have a hard time finding a doctor that thinks I know what I am experiencing. I have had that "feeling" in my legs for as long as I can remember but did not know others suffered this also.
It just so happened that a professor at the college I attend noticed the constant movement of my legs and my restlessness. I suffer 24 hours a day. She asked me about it and I told her that I get very little sleep because I cannot bear to keep my legs still. I feel like I will literally go insane if I stop moving. People assume I'm always nervous because of the movement.
What I need to know is; how do I get a doctor to listen to me and believe that I need help? I can hardly begin speaking when I am cut off and it is dismissed. I know MD's have a hard time prescribing controlled medications to young people because of the stigma of drug abuse, but the only things that I have been told that worked are controlled medications. (I worked in a pharmacy a few years back, before the teacher told me about it.)
So, if you have an idea about how I can convince my MD that I will go nuts without treatment please e-mail me.
You just need to see a doctor who understands sleep disorders/RLS. You do not even need the narcotic drugs as Mirapex or Requip will generally relieve your RLS problems and they are not controlled substances and have no abuse/addiction potential.
If you cannot find a sleep/RLS doctor in your area, print out some of the information from this website or the RLS Foundation's website and most good doctors should be responsive.
Sent: Monday, April 09, 2001 5:22 PM
Subject: RLS & cold weather?
I am from India. My mom is a long time restless legs sufferer & now even I am getting symptoms of RLS. I have been advised of the benefits of Wellbutrin SR 150 mg. I will be seeing a neurologist tomorrow but I just saw this website. I would talk to my mother's doctor about Mirapex & Requip. But I have noticed that this happens to me & my mom only when it is cold.
I used to have these problems very rarely when I was in India. With pain killers I used to get relief. Now I am in Minnesota where it gets incredibly cold & my RLS been severe from the time I have stayed here. I didn't have any problems in summer. I am still not sure if RLS has anything to do with cold.
Thanks, S. C
We have had several RLS sufferers who find that weather affects their RLS symptoms, but some are worse in the cold and others are worse in warm weather. It is very difficult to figure out why such difference responses occur in the same disease.
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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