If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Although I have had RLS in some form most of my life (now I'm realizing), it has severely worsened within the last 2-3 years of my life (I'm now 43). Two months ago, a neurologist gave me samples of Mirapex to try. It has all but eliminated the late evening "crawlies" and resulting leg jerks and has dramatically improved my sleep quality (I only rarely experience RLS during the daytime).
Now for the question. I am taking .125mg twice a day, one at around noon, and the other with dinner at around 6-7pm (total daily dosage is .25mg). Although the jerks are gone, I am lately getting aching in the affected left leg only. Before taking Mirapex my legs never ached, they just jerked and "crawled". But now, I have the pain.
What could this indicate? Am I taking too much, or too little Mirapex? I lately tried to take the .25mg dose once a day in the evening, instead of spread out twice a day, and that's when the aching really began. Now I'm going back the lower dosage twice a day. Does time of day make a difference when taking this drug?? And what can I do about the aching??
Kelly, from Austin, TX.
Great site, I learned a lot of things from it. I have been diagnosed with sleep apnea (use CPAP) and RLS. I first was prescribed Requip by my sleep doctor, but it caused PROFOUND sleepiness. I switched to Mirapex and all was okay for a few months, it helped my RLS and together with 5mg of Ambien, taken when needed, was enough to get me through the night.
However, recently, in the last month or so, I have not been able to sleep- the doctor increased my dosage of Mirapex to 2 -3 of the .25 mg tablets a day. With increased dose, side effects have increased, such as constipation, muscle rigidity, feeling unfocused, and insomnia seems worse. I am not in synch anymore.
wants to do another sleep study and I guess I will soon. Also, I was taking
all the Mirapex , either .50-.75 mg, about 1-2 hours before bed. I just started
taking one pill around 5:00 pm and the rest as usual- do you think this will be
beneficial? Also, I am reluctant to take the Ambien on a regular basis, but
my doctor says I should not be afraid to take it. What is your opinion?
I am thinking of asking him to change medications. It seems some people have success alternating. Also, the opioids work well for me. Should I ask him about Darvocet or Lorcet? Would I take these in conjunction with the Mirapex? What about Ultram?
I am really getting at my wits end due to lack of a good nights sleep. Even when I sleep, it seems very light sleep and not restful.
Any advice or overview would be appreciated.
We are the parents of a 14 year old boy with PLMD, with minimal RLS symptoms. Max will be 15 in May. He has had this condition since he was an infant. He had severe insomnia. He was able to sleep only a half hour or so at a time. His limbs and sometimes even his torso jerk, sometimes hard and sometimes it is very subtle. He has had neurological tests that ruled out seizures, etc. He had a sleep study done 3 1/2 yrs ago by a sleep specialist. The diagnosis was PLMD, many arousals associated with movements, Alpha delta sleep, NO REM sleep attained, with 58% sleep efficiency, so you can imagine how tired he is after waking up every few minutes and then having trouble getting back to sleep each time, throughout the night.
Max has been taking a combination of drugs, as they are not effective alone: 1mg Klonopin and 600mg Neurontin. (The Neurontin had to be slowly increased because it caused him to vomit.) This has been a tremendous help to him. But they are variable and seem to have lost some effectiveness, and he still has trouble getting to sleep and still has some restless nights.
Now that he is in High School and getting up at 6:30 AM instead of 8:00Am, it has had a bad effect on him. He is very intelligent, an Honors student, a scuba diver, and a musician and active in the school marching band so he is physically active and socially well adjusted (absolutely not hyper). He is a great kid. He has Crohn's Disease, but it is well under control with only an antibiotic (not Flagyl) and no steroids for 5 yrs now. We also gave him an iron supplement which has raised his ferritin level from 25 to 42 over the last year and iron is normal.
The problem he is having is that the drugs and the still not great consistent sleep are causing him to be fatigued, sleepy, and have great difficulty focusing in class, especially math ( He is taking a 3rd year level Honors course as a freshman.) He wants to take these classes and does not want to change his schedule...very determined to not let his problem slow him down. So we are working with his Doctor to try switching to a Parkinson drug. She is consulting with some sleep specialists who have experience with non adult PLMD patients.
My husband and I are concerned about these drugs, but Max has asked for help. I know that your replies are for educational purposes and we would never do anything without the advice of Max's doctors, but you seem so knowledgeable and understand how devastating this problem is. If he is switched to a new medication , which do you think might work best for him? How do you take him off these current drugs, especially the Klonopin, that he has been on for so long? He is very slim, 5' 7, 110 lbs, and any thing that makes him nauseas for long would be a problem.
Thank you very much for your consideration of Max's problem.
Lin and Marty E.
Usually by morning it will have subsided, as I normally experience this in the late evening into night time. But by then I have to get up to go to work, so I'm usually a little tired during the day. Another problem is that my husband and I no longer sleep together and haven't for years due to my getting up and around sometimes 2 -3 times a night, and medication for colds etc. definitely makes it worse in my case.
This combination works reasonably well. The VA furnishes both medications. I would like very much to quit the Darvon, as it has unpleasant side affects such as constipation and appetite suppression. Not to mention the slight hangovers, but the Mirapex alone will not do the job.
I have been researching (via internet) cabergoline (Dostinex) and it sounds very promising to me. Could, and would, you give me any information, or opinion about these medications?
I have tried Requip several times and have stopped taking it because of nausea and no sleep when I am taking the Requip. I have read quite a few of your medical reply and would like to know if Mirapex might help. My doctor tell me they are the same.
Thank you for you time and the support you give RLS people.
a lobotomy 3 1/2 years ago, I developed RLS. My mother had RLS but never
received treatment. I don't think her symptoms were as severe as mine.
Before diagnosis I underwent some testing involving electric shock but my
doctor said the tests showed nothing. I experience the sensation of standing
on low voltage electricity, occasionally my muscles will "crawl" in my calves
I used to smoke and have occasionally fallen off the wagon and used the Nicoderm patch to help me get back "on".
I have been taking 300 mg Neurontin and it helps quite a bit. My RX calls for 3 times a day, but I only take it twice a day, 1 in the morning and 1 at night about 1 hour before bedtime. Neurontin is very expensive. Two a day works for me, although 3 would be better I can live with 2, but I also take one .05 lorazapam with the evening Neurontin. I sleep like a baby.
I have noticed that my hair is getting very thin. (I'm 62 years old) and was wondering if this could be a side effect of the Neurontin. I am seeing the neurologist in about a month but would appreciate a response from you.
I have had RLS since I was eight years old. It has become debilitating these past few years, lasting all day. It has "spread" from my legs to my body from the neck down, prominently occurring in my arms, hands, feet, and back. In 1996 I discussed this problems with my primary health physician. She didnít know much about it. She discussed it with a Neurologist who suggested Klonopin.
At the time I didnít know about itís potential addictive properties or the possibility of having a seizure, or so I was told by another Neurologist. As he put it, "Youíd better get off of Klonopin because if you went on a vacation and forgot the medication you could have a seizure." Klonopin worked as far as the RLS went. Actually, I donít remember feeling anything. I just felt numb. I went into a detox facility March 2002 and really felt the effects of Klonopinís addictive properties.
I have also been prescribed Neurontin, Amitriptyline, Norco, to mention a few. I had back surgery in 2000 and a C7 discectomy March 2002. These medications were obviously for chronic pain. I still take 300 mgs. of Neurontin three times per day; however, it does nothing for the RLS.
I have been on Prozac for years but switched to Wellbutrin. I have read that antidepressants could, and probably do, have a direct affect on RLS. I havenít noticed a big difference in both antidepressants working against relief from RLS. I havenít been able to take Wellbutrin because of nausea.
I also take hormones: 200 mgs. of Prometrium and 0.625 mg of Cenestin and 10 mgs. of Lipitor (when nausea doesnít overcome me.)
I "cold-trucked" it until June 2002 when I saw a Sleep Disorder doctor. He put me on Mirapex which made me extremely nauseated. I was vomiting all the time. Then he prescribed Sinemet which did nothing. Requip was the last prescription which worked somewhat. I was on Requip until the first part of February 2003. I didnít feel satisfied with this doctor. He didnít "listen" to my story and how this horrible disorder has affected my life. Every time I called him to discuss medication I had to go into his office for a consultation. He had his receptionist call me to remind me of an appointment that I did not make. He gave me the impression that he was in the business for the money, no people skills.
I recently visited with a female Neurologist who replaced Requip with Permax. She suggested a blood test to check iron levels, etc. She wanted to check for Diabetes as well. I have an appointment Tuesday, February 25 to discuss the results and to see how Permax is doing. In the meantime, Permax is making me extremely nauseated. I canít keep any food down; however, she suggested I take Domperidone (a compound drug for nausea) one-half hour prior to taking Permax. The domperidone is working about 70% of the time. At present I am taking .75 mgs of Permax three times per day, and has relieved approximately 80% of the RLS. I feel light-headed after I take Permax. I have to lay down after I take the medication. I also take Ambien. If I didnít take Ambien I donít know how Iíd get to sleep! However, the 10 mgs of Ambien I take allows me to sleep approximately four (4) hours. I AM EXHAUSTED!
I have noticed that when I become extremely agitated Permax doesnít alleviate this disorder. When I become exasperated I have a difficult time getting over an "attack." Iíve paced the kitchen floor, used vibratory stimulation on my hands, feet, and legs. I have to stretch my limbs all the time. Specifically in the evening, I lather my hands, feet, legs and, at times, back, with Bengayģ which actually aids as a distraction and eases the horrible feelings RLS causes. The RLS moves from left to right, depending on the night.
After taking Domperidone with Permax, I canít believe it wouldnít have worked with Mirapex. This will be something to discuss on Tuesday.
RLS is severely affecting my life, marriage, mother-hood and grandmother-hood. I am extremely gloomy and have to constantly reassure myself that life will get better (someday.) I donít feel safe driving a vehicle and feel trapped inside my home. I donít have the energy or motivation to take a walk outside. Most days I canít even read a book.
I do not drink alcohol, eat chocolate (but on occasion,) drink coffee or tea (except organic.). I would like to know how you have treated patients with similar symptoms.
Thank you for any advice you can provide.
Maryann M., 52 year old female.
A Reply from Maryann M.
Thank you for your response to my e-mail. I saw the Neurologist today and she said I should take Neurontin as follows:
1 capsule (600 mgs) prior to bedtime; and thereafter 600 mgs x 3/day and after four days make assessment. I should also wean myself off of Permax for approximately six days. I was wondering what you thought of Neurontin solely helping me??
I am also very depressed but she didn't want to recommend any medication. I discovered a supplement at our local health food store called 5-HTP. Do you know much about this responding to depression very well?
I also read, on the Internet, about Lithium orotate. I'm also wondering if this is safe to take for depression. I talked to a knowledgeable person at the health food store and she said there is a huge controversy about Lithium being sold over-the-counter.
Thank you for whatever advice you can provide.
In April of 2002 I began experiencing strange symptoms. These symptoms are
1) Involuntary shaking and jerking of my arms and legs during sleep and upon waking. This occurred almost every night/morning.
2) Severe leg aches and cramping if I would sit still for two long.
3) Overwhelming urge to push hard on the floor with my legs or get up and walk around.
I began seeing a Neurologist in Central Illinois that specializes in Neuromuscular and Sleep Disorders. He prescribed a battery of tests including: a full neurological work-up, complete blood work-up, EEG, Brain MRI, VEP and EMG. All testing including blood work has came back within normal ranges and been negative.
After seeing me for approx. 6 months and ruling out all other possible medical conditions that would be characteristic of my symptoms my Neurologist came to the conclusion that I am suffering from PLMD and RLS. He first prescribed me Sinemet (1) 25/100 per day which had absolutely no effect on my symptoms. He then prescribed me (1) Sinemet CR 50/200 per day and I have had amazing results.
For approx. 4 months my symptoms had almost completely gone away. Recently I began experiencing my symptoms again although now quite as severe as without the Sinemet. I do not want to increase my dosage of Sinemet as my symptoms reappear.
I hear both
good and bad about using Sinemet. A lot of people have said that Sinemet is
very harmful to your body. Is this true? If so, is there any other
medication that I can take that may help my PLMD and RLS?
I am sleeping better but find that I am retaining water and have gained five pounds in just the week since I started increasing. I also find that it isn't really helping with the pain, as I still wake up hurting. I am noticeably sleepy during the daytime (I am working) and find that my concentration and memory are not what they were. I am reluctant to continue increasing this because I cannot afford to gain any more weight. I am already dealing with a weight problem and don't need to add more.
I'm wondering if anyone else has noticed these side effects, and if there is some other medication I can take in place of the Mirapex that won't make me feel this way?
Can you please tell me how I may obtain your manual on RLS? I have an older one, but I am getting ready to move and have put it somewhere and can't find it. I have Fibromyalgia and a doctor put me on Zoloft which brought out RLS which I didn't even know I had. After taking it for about 3 weeks, I was desperate to get some sleep.
Then someone told me about a support group for RLS here in the Bay Area of Calif. and I went to their meeting and bought a copy of your earlier version of the manual. I immediately stopped taking Zoloft. I went to my regular general doctor and he gave me a prescription to Mirapex. Ahhh, what a wonderful night of sleep I finally had!!
Recently I decided to take a holiday from Mirapex. The first night, I got 4 hours of sleep and 6 hours of thrashing in bed. The second night, I got about 1/2 hour of sleep. By 6:00 a.m., I was angry and very afraid since I now know that I cannot go without medication for RLS.
After talking to two people in support groups, writing many e-mails and then finding your web site, I feel much better. Now, it doesn't seem so hopeless. When I read the letters of others, I see that there are others much worse off than me. Also, I realize what a wonderful doctor I have. He appreciates the information I send him on Fibromyalgia and RLS and is willing to prescribe medications like Mirapex which completely control my symptoms. I guess, I just need a slightly higher dosage.
Thank you, thank you just for being there. Your web site has the most comprehensive information to help people that I have ever seen.
I just received information from my Blue Cross provider indicating it
will no longer pay for brand name prescriptions when a generic
equivalent is available, even when the doctor marks "dispense as
written" or "do not substitute".
I want to know if there are generic equivalents for Requip and Mirapex. If there are generic equivalents, are they as effective as the brand name prescription.
I remember as a
child hearing my mother complain about discomfort in her legs. I sometimes
would go with her to the doctors and would translate for her (her English was
limited) and describe to the doctors what she felt. The doctors would look at
her with this blank look in their eyes and offer no solution. She would leave
the doctors office feeling helpless - I too felt helpless.
I cannot remember when I started suffering from RLS, but I knew that "I had what my mother had". When I would go to my primary care physician for my annual physical, I would complain about "the indescribable pain" I felt on my legs. The doctors would make me feel as if I was making these symptoms up. Another doctor would ask me questions as if I was in depressive state! I basically gave up - and learn to live with my restless legs which resulted in restless nights!
It wasn't until last year as I was watching television that during the News there was a "Health" portion of the program that mention "Restless Leg Syndrome" - I said to myself screaming THAT'S IT! that is what I have - I was finally able to associate a name to what I felt.
Recently, during a pre-employment physical, a very caring nurse was familiar with RLS and recommended that I take: Calcium Citrate (500 mg), Magnesium with Vitamin D (500 mg), Vitamin B6 (50 mg) and Vitamin E (400mg). I will soon try this to see if this will help me. Maybe you should try this too - with your doctor's approval of course.
I must say, I feel comforted that I am not going crazy and that there are other people that can relate to what I am going through (I thought that my mom and I were the only ones suffering from this).
So to my new found RLS family - let's stay hopeful and keep searching for relief.
V.Gomez - Bronx, NY
Medical ReplyAlthough minerals such as calcium and magnesium and vitamins may rarely be helpful for RLS, there are much better treatments. Ask your doctor to start you on Mirapex or Requip and you have an excellent chance of not having to suffer from RLS any longer.
I am a 35 year old female with no children who has had "weird sensations" in my legs since I was about 15 years old. Generally as far back as I can remember these sensations only happened when I was sitting for long periods, in the movies or on long car and plane rides. They occur in either one leg or the other, sort of feelings or twinges coming up a leg from the foot about every 10-40 seconds or so.
Since I always would contract my muscles whenever this would happen I would have a small spasm or tremor that I would try to hold down. If I do not hold my leg down it involuntarily kicks or shakes up. I am soon to be married and my fiancť has said in the last 3 months or so that I am kicking him at night.
t is to the point where he is sleeping on the couch because my "kicks" shake the mattress and wake him up so many times per night that he gets no sleep. He had never complained about this or noticed it at all until recently. I on the other hand sleep right through it and never wake up. Whenever he wakes me because of it I have trouble even believing that I was doing it! I am not sure if this is RLS or PLMD, because I don't seem to suffer any sleep loss because of it, and it has only shown up in my sleep recently.
I am not sure what to do as I don't want to take any medication since I plan on getting pregnant in the near future. Any advice would be appreciated to save my relationship. We are even looking at getting a new bed, perhaps one with a foam mattress that would not shake. But at this point we are not sure what to do.
I have Nocturnal
Myoclonus. I also have Bipolar Disorder and Sleep Apnea
The BP and sleep apnea are being treated.
My question is this: I can't tolerate other benzodiazepines other than Ativan which I already take and it does nothing for the PLMD. I was tried on Mirapex and it seemed to make things worse. I was waking up constantly during the night. Is this a common side effect of Mirapex? And could you suggest another good alternative?
I live in Norway and my good Doctor through the years has prescribed Tegretol, Valium, Zopiclone, magnesium and calcium. All have been effective for a short period of time then I must try something new. As from today Iím now back on Tegretol.
I discussed your website with my Doctor today and he gave me permission to contact you about several of the medications you recommend. I also contacted the local pharmacist and he informed me that in Norway they can supply Dostinex; Cabaser; and Requip. Mirapex can only be obtained from outside Norway making it a very expensive alternative. Iím not familiar with these medications so I hope I got them right.
Iím hoping that Tegretol can replace the Zopiclone, magnesium and calcium tablets which I have been taking up till today. Iím also hoping that you can prescribe (recommend) something other than the Tegretol which I begin with today.
If Iím fortunate enough in that you recommend some medication for me would you please explain why, in doctor terminology, as my doctor, who is unfamiliar with these medications, will have to prescribe what you recommend (reasons for, side effects etc.).
Iain C. W. (photographer)
P:S: I found that my taking MSM aggravates RLS but its effectivity outweighs this.
It is effecting me because I am constantly having to toss and turn at night when I am trying to fall asleep because I simply can't hold it still. I am sitting up at 1:30 in the morning looking this up because I just can't get to sleep and I had seen this ailment mentioned on a TV program.
Does this sound like RLS to you? My main concern is that this is going to get worse as I get older. Right now, it hadn't made my life unbearable, it's more of a nuisance than anything, but should I seek treatment now or wait until the condition worsens? I would really appreciate any input you can give me and information on any doctors in the Dallas/Ft. Worth area who deal with RLS.
I went to a doctor about it a few years ago and he told me to take magnesium supplements. At the time I was living on well water and suffering greatly. I took the magnesium on a daily basis and I rarely suffer anymore. I would suggest this to anyone suffering from RLS and I hope my information will help.
Thank you so much for your past responses to my inquiries. You have been very helpful. I have now been on methadone for about 4 weeks and it has been a miracle for me. I am virtually free of RLS symptoms. I know I will have to watch this medication very carefully. It is such a treat to go to bed and fall asleep! And I can sit and read a book--for the first time in years.
Keep up this great Web site.
During the winter months it's around 7:30-8:30pm. During the spring and summer months it begins around 8:15-8:45pm. As a child, through my teenage years, I would sleep in sweat clothes. The warmth seemed to help. It was worse during pregnancy. I would get up during the night and lie down in a hot bathtub, get out and put on warm clothes -- and this was in Southern California.
We read an advertisement for a "CuddleEwe," which is a wool pad for the bed. I looked it up on the web. It is not cheap but we thought, why not try it. (It has a return policy that made it cost effective.) When I get into bed, it relieves my symptoms almost immediately. My 88 year old mother has the same symptoms so we gave her one for Christmas. She is amazed at the relief.
My brother, who also has the symptoms, has purchased the pad. He swears by it. It has not taken away the RLS, but the symptoms go away almost as soon as I get into bed. You might want to look into it. It is drug free!
Evidently the combination of quinine and ibuprofen, (a combination I had taken several times before) caused Thrombotic Thrombocytopenic Purpura (TTP), which in turn caused the kidney failure. I was immediately started on kidney dialysis and plasmaphoresis. I was hospitalized for 21 days, and am very lucky to be alive.
The form I took the quinine pill was in Leg-A-trim, an over counter herbal medicine, and a bottle of quinine water. I would hope this "drug" would be taken off the market, as I certainly would never want anyone to go through what I went through. I have used the pills for the past 4 years without any side effects. This time certainly turned out differently. Just wanted to let you know my experience with quinine.
What have been working for me, is rubbing some Icy-Hot or Ben-Gay cream on my legs, but I thing I'm running out of luck, it doesn't seem to work too well anymore.
Wishing you all a good health, I say good-bye,
I am so thankful for your website. My doctor knows very little about RLS . I have had RLS for years and only in the last 2 years knew it had a name thanks to the internet.
I did go to a doctor that knew about RLS. She has prescribed Mirapex .125 to be taken at bedtime. It help the legs but still had insomnia. she then told me to up the medication to 2 pills. That caused a headache and I still had insomnia. She then gave me Neurontin. It does make me sleepy but doesn't effect the legs. I don't know where to go with this now. I can't get into see her until June and when I call I have to leave messages and she then has her nurse call with a different medication to try.
I don't know what meds to take with what. Can I take the Mirapex early in evening and the Neurontin at bedtime. I don't want to wreck my health with drugs but I have to get some sleep sometime.
I do sleep with this combination but never feel rested. I have not had a decent day in over 7 years and I am becoming very desperate. I have taken all the Parkinson related drugs, which had no effect, numerous anti-depressants, Ambien, sonata etc.
I just stated taking Dilaudid 4mg last night along with my usual 7.5 Imovane and 30 mg temazepam but Dilaudid scares me a bit (although I did take Oxycocet with no results). Should I continue to try Dilaudid out and should I taper off the other drugs?
If I take no medication at all, I simply do not sleep that night. I have tried naturopath, homeopathic medicine, sleep restriction. relaxation therapy with no results. It does not seem to matter how much I sleep, I am very tired all day where now it is an effort to even leave the house.
Thank you for your comments,
A Reply from TF
When I tried to cut back on the Restoril to 15 mg, as you suggested, I had virtually the same problems going to sleep but felt very tired the next day, and in fact so tired I was unable to do anything but lay down.
My question is I would like to simplify what I am taking. If I try again to cut down and eventually off Restoril, do I then increase the amount of Dilaudid. I have read that increasing the amount of Imovane over 7.5 has no more effect.
Dilaudid has given me some hope for the first time in 7 years. My body has shown a tolerance for drugs, lower amount never seem to work, so what would be a safe amount of Dilaudid and do you think if I increased it before bed I may be able to go off everything else?
Since he can't talk it's hard to accurately diagnose him with restless leg syndrome but he seems to have all the symptoms. Is there any medication that is safe for him to take? Any advice is greatly appreciated.
Daytime activities usually are not affected with Restless Legs. Doctor's have prescribed about every sleeping pill, antidepressant, and even some Parkinson medication but with no avail -- it only makes the situation worse. It has gotten so I don't know what comes first, the insomnia that causes RLS or RLS that causes insomnia.
I had pretty much given up and decided that I would just have to live with it when I discovered as I was recovering from a shoulder surgery that the hydrocodone the doctor prescribed for me for pain allowed me to fall asleep without waking until morning. Also, if I have had a severe cough and am prescribed a cough medicine with codeine I also sleep very well.
Since codeine is a narcotic I hesitate to abuse it. However, I have tried a half dose of hydrocodone and 5 mg Ambien and that works also. Ambien by itself (even 10 mg.) makes my insomnia worse. I haven't talked to my doctor about this latest discovery since I'm afraid I'm getting into a habit forming situation. I took only the Ambien tonight and am "climbing the walls".
Do you have any suggestions?
It was great to find this site. I have a couple of tips to pass on that has really helped me. SWEETS make RLS symptoms worse. I discovered this after reading an article about RLS and monitoring my diet. It is amazing how much worse my symptoms are if I eat sweets.
Also, a new doctor that I saw suggested large doses of magnesium. If I take magnesium 2-3 times a day and stay away from sweets I manage most days without Sinemet. Hope this info will help others out there who are suffering.
I was recently diagnosed with RLS and put on Klonopin. This
for bedtime, but I also suffer during the day. Is there any medication
works that doesn't make you drowsy?
Also, is RLS a symptom of or type of ADD/ADHD?
Thank you SO much!
Has anyone ever heard of the drug SOMA being given for RLS? A friend said this worked well for his RLS and he is able to sleep at night without any side effects from the drug. He thinks it is a miracle drug. What is your input on this treatment?
I have been on Requip, .75 mg. (.25 x 3 @ day, taken 1-2 hrs before bed) and was on Permax before that for 3 years, 1.5 mg (.5 x 3 @ day - I think). Each time rebound and then augmentation set in. I hate to increase the Requip again because it was so awful to go off of the Permax; I don't want to go through that again.
Maybe they haven't been out long enough, but do doctors think that these drugs can help some people with RLS indefinitely (all their lives)? Thank you.
You've helped me a number of times in the past and I really appreciate it. Now, I have another question. At the age of 82, I've been treating myself to a one hour massage every other week and I love it. However, several times lately I've noticed that, as she starts working on my left leg, mild RLS symptoms start behind my knee and spread upward to my left buttock.
I have a pinched nerve in my back which is causing quite a bit of pain in my left leg along with a feeling that my left leg won't hold me up. I'm told the only cure for the pinched nerve is surgery which is out of the question because of diabetes and congestive heart failure.
Could there be a connection between the massage and the RLS, which, by the way, doesn't usually last very long after the massage is over? This is not massive problem. I'm just curious about the connection. And, of course, I always welcome your suggestions.
I have started visiting a Chinese energy therapist to try treatment for my RLS and PLMD. I have had 3 visits so far over a period of 9 days. I am also using Sinemet and have agreed not to drop it unless we see real improvement. The treatment consists of electrode pads connected to my back, stomach, legs and feet which pulse to Ďunblock my channelsí, followed by a 20 minute sauna. I also have a bunch of herbals pills to take 3 times a day. I have been told for the first week I should eat vegetarian only, with zero protein and following that eat my protein at lunch time, not with the evening meal.
This treatment works on the basis that the problem is my bowel and if she heals my bowel, my RLS will go away together with my sinus problems and sore back from external injuries.
The therapist has many documented case studies at www.chineseenergytherapy.co.nz although she hasnít heard of RLS.
I couldnít find anything on the web site other than electromagnetic therapy. The treatment is pretty expensive, but I thought I could try it for a few weeks, just in case. Have you heard of this type of therapy before? I couldnít find any references on the web site.
I have had RLS for around 6 years that I know of and am not having a good time with Sinemet. Mirapex is not available in New Zealand.
Luigi / 46 / New Zealand
My description of RLS is "Trapped in your body while being tortured". Some of the descriptions describing RLS seem to make it almost a laughing matter to some people that read it. I think the public needs to know that it can truly ruin your life.
I do have a very severe case of RLS. My mother and father both had it so I really suffer with it. I have it so bad that if I did not have medication to help relieve (to some extent) some of the suffering, I would probably commit suicide. I could not spend my life suffering as I do. I am really that miserable. My life is truly a nightmare almost every night, once in a while I have some relief.
I have it not only at night but also a lot of the time in the daytime. Sometime I can get in the car and be fine and 10 minutes later I am suffering to such an extent we have to pull over on the freeway so I can get out. We do not go to the movies or on any long trips. I cannot even sit down and have dinner when I get home from work most of the time, I have to stand at the counter. I am 64 years old, and it started in my forties. The last 5 years have been the worst.
Below is a very interesting fact that I hope you can pass on to someone that is researching this disease.
My mother had RLS starting when she was 40 and still remembers it as one of the worse things she has ever been through and she has been through a lot in her life (she is now 88 yrs. old). My mother had a nervous breakdown in her late forties and was given shock treatments 2 times while in a mental hospital. I know that RLS only gets worse as you get older. We just realized recently that her RLS stopped totally after receiving the shock treatments. I think this information would be very interesting to the research department.
Thanks for listening,
My mother suffers from RLS as well as fibromyalgia. She has been on Sinemet for years. About 4 years ago she was put on methadone 10mg at bedtime. Two weeks ago she decided to taper off the methadone with the help of acupuncture. It has been a complete failure.
Her RLS has worsened. She has not slept in 2 weeks. Could it be that the Sinemet was no longer working and the methadone was helping to control her RLS? If this is the case and she is to switch to another RLS drug such as Permax, should she taper off of the Sinemet?
Also I have read about involuntary movement side effects from Sinemet? Are they reversible if the medication is discontinued?
I am finally at the end of the road from dealing with RLS. I am a 49 year old female who has suffered with RLS since early childhood. My mother suffered terrible with this problem until her death at the young age of 57 in 1984. The sad thing was in the earlier years she was told by neurologists that the problem was "in her head" due to the lack of understanding about RLS.
I was fortunate my family doctor knew of this problem in the mid eighties and she has always tried to help me as best she could. I started out in 1985 on low doses of Tylenol #3 PRN in 1985 along with Tegretol, which provided some relief. A 30 day supply of Tylenol #3 would last me a couple of months. As the condition worsened down through the years, she has sent me to different neurologists and I even had my endocrinologist treating me for RLS.
I am currently on a pain medicine (either Tylenol #3 or Darvocet N-100), Mirapex, Neurontin, and Sinemet as needed. However, I do experience augmentation rather quickly with regular doses of Sinemet, which is upsetting because it works so well in the beginning of treatment. I had a hysterectomy in March, 2002 and take Estrace. I was severely anemic from heavy bleeding prior to the hysterectomy but my blood count has improved significantly.
I have done very well since the hysterectomy but I do believe my RLS symptoms have worsened since the surgery. For instance, on three or four occasions this past year, I have actually had nights when none of the medications helped with my symptoms and I was up literally all night long and wouldn't be able to fall asleep until around 7 a.m. (really a problem considering I work 6 a.m. to 2 p.m.)
I was also diagnosed with fibromyalgia and CFIDS this past year and needless to say, along with RLS, I am constantly in a state of exhaustion. Last night was one of those horrible nights. I took my usual Mirapex and Neurontin, but also ended up taking three Tylenol #3, and out of desperation two Darvocet N-100's (that I had left over from an old prescription) during the course of the night before I finally got relief and was able to fall asleep.
Nights this severe are becoming more frequent and it scares me. I keep feeling that there has got to be something out there that I can take each night and simply fall asleep like normal people do. I really don't feel like I can go on much further without some good quality of sleep.
Can you tell me what my options are at this point. The neurologist I see says I am definitely the worst RLS case he has encountered and doesn't know what else to do to help me.
A Reply from Marti
Sent: Wednesday, April 02, 2003 4:40 AM
I don't want to get addicted to anything. I have a deep fear of addiction. This is why I ask my doctor continually to alternate my pain meds. I also have a fear of reaching a place where no pain meds will work when needed. After my hysterectomy I was on a Demerol drip and they couldn't seem to get my pain under control. It was horrible and I am afraid it was because of the pain medicine I take on a nightly basis.
I would like nothing more than to never have to take a pill again and crawl into bed and simply go to sleep like normal people do but that doesn't seem to be the hand that was dealt me. Who knows, maybe someday we will discover the perfect cure for this "torturous" condition.
Dostinex (which is used extensively in Britain as it is much cheaper there) would be the perfect choice if not for the expense. You might still try higher doses of Mirapex to see if you still get reverse effects.
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