Patient letters on RLS symptoms and remedies- Page 83

Sent: Sunday, October 12, 2008 3:36 AM
Subject: Legs on Fire!

Hi, I chanced upon you website after I Googled "legs on fire" and "chronic insomnia". I wasn't able to locate the matching reference but perhaps you can help me.

I am 45 years old and have suffered from insomnia for about 8 years (started when I was pregnant). I have great difficulty falling asleep (often lying awake 3-4 hours before I fall asleep/sometimes not falling asleep at all, all night). When/If I eventually fall asleep I will wake up again after an hour or two and just doze in and out of sleep for the next couple of hours before I have to get up.

I was prescribed sleep medication for a couple of years initially, but it became too expensive when my Doctor stopped giving me repeat prescriptions and I had to keep going back to her every 3 weeks or so. I started taking Dolosed/Mersyndol each night (contains codeine phosphate 10mg, doxylamine succinate 5mg) which does help, but I still feel exhausted/not rested all day. I have also tried another "over the counter" medication which only contains the doxylamine succinate but I didn't find it to be effective. It seems to be the codeine which makes the difference to me.

I have also been treated by a GP who has been trained in conventional western medicine as well as traditional Chinese medicine. He tried acupuncture and also herbal remedies to no avail.

I am always very restless at night, tossing and turning over every couple of minutes unable to stay in one position for long, but I don't think I have RLS. A peculiar symptom which I do periodically have, is the sensation of my legs being "on fire" at night. When it occurs I have to throw the covers completely off my legs and wrap blankets around the top half of my body to keep warm. My legs (esp. thighs) feel like they're burning and radiating heat but they don't feel hot to touch.

Does this sound familiar to you?

Hoping you can shed some light on my problem,

Linda P.
Perth, Western Australia

Some RLS patients do have "legs on fire". However, what differentiates RLS from other conditions such as peripheral neuropathies (nerve damage often due to conditions like diabetes) is that RLS is associated with an almost irresistible urge to move your legs when at rest (and when they are burning which should then only occur at rest) and the symptoms (both the urge to move and the burning) should be relieved by moving. Doxylamine is related to antihistamines and tends to worsen RLS while opioids like codeine help RLS symptoms.

If you do not have the above urge to move and other symptoms then you do not have RLS but may have some sort of peripheral neuropathy and should see a neurologist.

Sent: Monday, October 13, 2008 7:10 PM
Subject: Methadone and RLS

I am 44 year old male who has dealt with RLS all of my life. I am very healthy otherwise, exercise a lot etc. I've been taking Mirapex for almost 8 years now. The same dose, .375mg continues to relieve my symptoms at night. I am anxious, now to get off Mirapex because of the augmentation that I have been dealing with for so long now but I cannot find anything to take at night that works for me other than Mirapex.

I've been taking Methadone and Neurontin during the day to deal with the augmentation. My question is how much Methadone is safe to take because I'd like to try it at night as well to see if it will relieve my symptoms at night. I currently take 10mg. of Methadone twice a day to deal with my augmentation. The problem with Mirapex for me is that although it helps me quite well at night, my days are worse than ever!

Or, if you have any suggestions, based on your experience for someone like me who has great relief at night from dopamine agonists but then has bad trouble in the day time with augmentation.

DL in Portland

If you definitely have augmentation (meaning that your RLS worsened by occurring earlier in the day within a few months of starting Mirapex), then you should get off Mirapex. That will typically eliminate the augmentation symptoms and enable for you to reduce your other medications. However, you will experience a week or so of increased need for methadone. After that, you should likely not need much if any daytime methadone and Neurontin but rather just take them in the evening.

Doses of methadone up to about 30 mg per day are generally safe as long as no escalation occurs (and you have no history of drug abuse or dependence).

Sent: Tuesday, October 14, 2008 8:08 AM
Subject: RE: Methadone and RLS?

Thank you very much for you quick response. I did start augmenting just a few months after taking Mirapex, almost 8 years ago.. I’m worried that I’ve waited too long since I've continued taking Mirapex for 8 years now and just suffering through the augmentation. I will stop taking the Mirapex at night.

Do you have a night time dosage of Methadone and Neurontin that generally works well for calming night time symptoms. I’ve tried getting off Mirapex at night in the past and I can’t seem to figure out what will work instead. I was going to try 10 to 15 mg. of Methadone with 600 mg of Neurontin and go from there.

Does that seem reasonable? I don’t have any drug abuse or dependence issue at all and as I mentioned am in real good shape, exercise regularly etc.

Methadone at 10-15 mg is the correct range for treating withdrawal symptoms when stopping a dopamine agonist like Mirapex. The amount of time that you were on Mirapex has little to do with your reaction to going off it as once augmentation has occurred, the withdrawal will probably be as bad as possible. Neurontin at 600 mg is reasonable as long as you have been on at least 300 mg of Neurontin recently.

You should not do this on your own (even with my advice) but rather under the supervision of your doctor (using my advice as a guideline).

Sent: Tuesday, October 14, 2008 8:09 AM
Subject: RLS and surgery

I have had a huge increase in RLS since 7 days post-op hip resurfacing/replacement. I am 37 year old who has had occasional RLS since teens and daily RLS when I was in my 3rd trimester with my 2nd pregnancy. I am now on daily Requip since I couldn't take the getting up and having to move while I was trying to recover. I am now 4 months post-op and still needing Requip.

Why did my RLS worsen? Any ideas in terms of diet or follow-up. I am wondering about iron but I was on iron supplements for 30 days following surgery and this is when RLS was at its worst. Can thyroid be affected by surgery? I have put on 10 pounds following surgery even though my diet has not significantly changed.

Kristin F.

It is very common for RLS to worsen after trauma to the body which of course includes hip replacement surgery. It would be worth checking serum ferritin levels since if it is below 50, iron therapy may be helpful.

Your weight gain may be simply due to burning less calories due to your decreased activity levels after your hip surgery. The thyroid should not be affected by surgery.

Sent: Thursday, October 16, 2008 5:22 PM
Subject: Methadone holiday?

My doctor switched me from Ultram to methadone. I had taken Ultram for 11 years for 24/7 severe RLS. The Ultram started losing effectiveness. After I got off the Ultram, my symptoms stopped coming at 8AM and now I don't get anything until around 4:00 in the afternoon. I take one and a half 5 mg tab. at 4:00 pm and the same at 10:00 pm.

I think at some point, the Ultram started causing my symptoms. For this amount of methadone (total 15 mg) daily, what is an appropriate drug holiday?

It is possible that the Ultram was causing augmentation of your RLS (worsening of your RLS with earlier onset of symptoms) that is typically only caused by dopamine agonists (Mirapex or Requip). There has been one article in the Sleep Medicine journal that discussed this issue and I have actually seen a few patients with this problem.

Your dose of methadone is still reasonably low (the dose range is 5-30 mg per day). There is likely no reason at all to take a drug holiday but just continue to take your current methadone and see if you can get by with even less (if possible). You should do fine without any drug holidays.

Sent: Saturday, October 18, 2008 6:37 PM
Subject: RLS

I have had RLS for over ten years - after being in a car/truck accident.

I wish I had known better at the time, but I went to a sleep doctor who diagnosed the problem after very problematic sleep for 9 months (and a sleep study) - and he prescribed Klonopin. I have been taking 2 mg. at bedtime all of this time. Sometimes I sleep ok, most times not so great.

I know how addictive it is NOW, but I was wondering if it's too late to wean from it and try Mirapex or Requip? Do you know of a regime to follow to complete the transition? I will take it to my new doctor, who works with me very well.

Also, I'm sure it's from the lack of sleep, but I feel so depressed at times. Is there a anti-depressant that is RLS friendly?

Denise

Your dose of Klonopin is quite high and with its long half-life of 40 hours, it may be causing some of your depression problems. Klonopin must be weaned off slowly (over many weeks) but most doctors should know how to accomplish that task while monitoring to see how you are doing. You may need a safe sleeping pill like Ambien or Lunesta to help you sleep while getting off Klonopin.

Mirapex or Requip are the drugs of choice and should most likely take care of your RLS problems more effectively and safely.

Wellbutrin and trazodone are RLS friendly antidepressant drugs.

Sent: Wednesday, November 05, 2008 5:26 AM
Subject: RLS & Klonopin

I wrote a month ago and told you about my history of an auto accident, RLS/PLMD and my dose of Klonopin (2 mg daily for ten years). You told me to use Mirapex, which I would like to do. So I worked up a schedule to reduce my dose by 1/8 mg. per month over the next year and a half.

Klonopin does help me sleep through the PLMD, but I have tried about 4 times to titrate off of it.

By week three, eliminating 1/8 mg. per month, I have such horrible leg spasms that I am drained by morning. Last night I just had one after the other in both legs. I am exhausted, and the residual pain lasts all day. Then I go through it again at night.

My doctor is great about supplying me with the 1/8 and 1/4 doses to follow the schedule of reducing 1/8 per month, but his only instruction is just to "keep it slow" - which I am obviously aware of.

Is there anything I can do to make the titration a little easier on my body? My greatest wish is to stop the Klonopin.

Any light at the end of the tunnel for me? My doctor will help in any way he can, but he doesn't seem to know a lot about what stopping the medication, even slowly, will do to a person.

Denise

It might be a lot easier to wean off Klonopin if you were on Mirapex. This drug would eliminate the need for Klonopin and then you would only have to stop it slowly in order to prevent withdrawal symptoms rather to treat active RLS.

Sent: Tuesday, October 21, 2008 12:08 AM
Subject: Neurontin

I am a 40 year old female that has had RLS since high school. I was on 1200-1800 mg of Neurontin daily. (600 mg tablets 2-3X's/day). My RLS got much worse this summer. My ferritin levels are below 10. I am now on Ferrous Sulfate 325 X3. The doctor took me off the Neurontin. I am on no other meds at the present and I am having a difficult time sleeping due to the RLS. I have gastroparesis, but no other tests showing why I should have anemia.

Could the high doses of Neurontin had an affect on my iron? I miss taking it and would like to go back on it. I cannot take Sinemet because of the oral iron and I cannot take Requip because of nightmares and audible hallucinations. I tried Klonopin and became really depressed and emotional on it. Any do have any advice or know of other medications I can talk to my physician about?

Iron deficiency is more common than usual in RLS sufferers. The reason is not fully understood but there is some speculation (based on research) that RLS patients may lose iron faster than those without RLS. Of course, a full work up for iron deficiency should be done in any person with low iron or ferritin levels. Neurontin has nothing to do with iron levels so that should not be a reason to stop that drug (anemia is a rare side effect on that drug).

Even though you had trouble with hallucinations with Requip, there is a chance that you may still tolerate Mirapex (but keep it at the lowest possible dose). If that does not work, then consider opioids or Ultram which should do the job. You can also try Lyrica (add it to the above drugs or by itself) which is similar to Neurontin but is better tolerated by some.

Sent: Tuesday, October 21, 2008 11:53 AM
Subject: Requip problems for treating RLS?

I have been on 1mg of Requip for about 1 year for RLS. I also have insomnia and sleep apnea. I use a CPAP for sleep apnea. I take Lexapro, Wellbutrin, Lamictal and Provigil for OCD, depression and daytime tiredness. I am tired all the time. My girlfriend noticed that after I take Requip I get very agitated physically.

I feel almost sick and my legs hurt and I kick and move a lot. I have to go to bed within 45 min to deal with the uncomfortable feelings. I never really knew exactly about my RLS. I know as I increased Lexapro it got worse. I also felt that Requip made me foggier in general not just after taking it. So I am trying to get off Requip to see if it relieves any problems.

Last night was the 2nd night I didn't take Requip. I felt terrible and was up like 40 times the first night. I feel better today and woke up like 5 times last night. Is it bad that I stopped Requip cold turkey? Is Requip known for making people feel crappy after taking it (almost making RLS a lot worse) after taking the pill?

I also take Ambien CR at night. I find without the Requip I am not as tired before bed and it takes longer to fall asleep. Narcotics are not an option for me. Do you think being on Requip can be adding to daytime fatigue?

What's the process going on in my brain since I stopped Requip? How long does it take to get out of me? How long until I can give a fair assessment of how I feel and sleep without the Requip? I don't know if what I am feeling is what its like without Requip or withdrawal. Does Requip damage dopamine receptors?

A very small minority of RLS patients do get worse RLS symptoms with Requip when taking it initially. However, a more common side effect is augmentation which is a worsening of RLS after a few months or so on the drug. This may be due to an effect on the dopamine receptors (which should be fully reversible with stopping the drug) but this is really not well understood. Some patients do notice increased sleepiness (fogginess from your description) from Requip but you are on so many drugs that it may difficult to tell which is causing this problem.

Typically, after stopping Requip, your RLS should go back to baseline (where you would be if you never took Requip in the first place) within a week or two. However, Lexapro is likely worsening your RLS (as you have already noted) but if you need this drug, you may be stuck.

Even though narcotics may not be an option, Ultram (tramadol) may still be an RLS drug to consider (it is not really an opioid although it is often classed as one).

Sent: Tuesday, October 21, 2008 7:49 PM
Subject: RLS and burning sensation on tongue?

I am a 42 year old male and recently have developed RLS. First, my wife (nurse practitioner) noticed I stop breathing at night and recommended a sleep study. I was diagnosed about 9 months ago with sleep apnea. Mild to severe (stop breathing about 30 time/hour). I began using a CPAP machine about 6 months ago and this helped me sleep, but it takes time to adjust to a CPAP machine. I had two sleep studies and during that time, did not have RLS.

In the past 3-4 months I have developed pins/needles feeling in my legs. The intensity can vary with level of exercise. I am a good athlete and run as well as cycle, but I am finding it more difficult because my legs cramp and feel tired. Recently, the symptoms have gotten worse and I also feel the "crawling" sensation in my legs. The sensations are worse at night, when sitting for long periods of time, and the only thing that helps is movement. I am now having difficulty sleeping.

I also have developed a "burning" sensation on the sides of my tongue. I have read some recent articles that discuss the use of Mirapex for treating burning mouth syndrome (BMS) and how it works on the D2 receptor. Many articles have also been written about RLS and D2, D3 receptors and the use of dopamine agonists such as Requip and Mirapex.

Do you know of any connection between RLS and BMS or burning sensations on tongue? Also, is it common for your legs to feel tired and non-responsive with RLS? Do you know of any connection between sleep apnea and RLS? Could they both be related to low dopamine levels?

I tried a Requip starter kit. I took 0.25 mg for 2 day, and on the 3rd day when I switched to 0.5 mg, all my symptoms went away (miracle). I continued taking 0.5 mg for 5 more days, but started having a lot of difficulty sleeping (severe insomnia) and cramping in my legs, so before going to the final dose (1 mg) for 7 days, I stopped the medication. Should I have remained on it longer to see if the side effects go away or try another medication such as Mirapex? Once the symptoms go away, should you remain at that dose.

After stopping, my symptoms have returned and can be severe. I have found taking 0.25 mg of Alprazolam helps me fall asleep, and I have read that this can be used to treat RLS, but if I awake at night, I feel the sensations and have to take another to fall asleep again. When I awake it doesn't feel like a restful sleep.

With or without taking any medications, I also have noticed trouble with concentration and some feelings of depression. I am typically someone who is extremely happy in life and run at 120% all the time, so this has been very difficult to handle. I don't like taking medications. I have had my ferritin serum level checked and it was 47 ug/ml which my doctor felt was good, although I have read that 50 to 100 for RLS would be better. What about taking an iron supplement (although I hear this can be dangerous for men), or folic acid to help with iron absorption.

There is no known relationship between BMS or sleep apnea and RLS. Most RLS sufferers do not complain about leg fatigue (unless they have a lot of PLMS) or non-responsiveness of their legs. Sleep studies cannot diagnose RLS but only PLMS (the leg kicks that occur in most RLS patients when asleep but also occur in many non-RLS patients). RLS gets better usually with mild to moderate exercise but often worsen with more vigorous exercise (which may explain some of your problems).

If the Requip is causing insomnia (although sleepiness is the more common side effect) at .5 mg, you may want to try .25 mg again. If that is not sufficient to control all your RLS symptoms, try .375 mg or even .5 mg again (by increasing more slowly like a week at a time you may not experience side effects). Since .5 mg of Requip took care of symptoms, there was no reason to even consider increasing to 1 mg (even if no side effects). If Requip does not work out, low doses of Mirapex (starting with as low as 1/2 of a .125 mg tablet and increasing by 1/2 tablets each week) may be helpful without causing trouble. You should always stay on the lowest dose that resolves the symptoms.

Alprazolam is not an RLS drug but rather a drug that puts patients with any discomfort (such as back pain) to sleep. As you have noted, when you wake up, RLS symptoms are still present and of course daily use of benzodiazepines carry a risk of dependence/tolerance.

Iron supplementation generally does not help much when ferritin levels are close to 50. The body absorbs oral iron extremely poorly as ferritin level increase over 35 or so. Although some experts believe that ferritin levels higher than 50 may help RLS, this has never been studied or proven. Typically, IV iron is necessary to get ferritin level significantly above 40-50 (this is usually done only on an experimental basis in research studies).

Folate does not help iron absorption nor is it involved in RLS to the best of our knowledge. Vitamin C (100-200 mg) does help absorption of iron by creating and acidic gastric environment.

Sent: Friday, October 24, 2008 3:52 PM
Subject: Inexpensive treatment for RLS?

Yes I have all of the symptoms when I sit down to watch TV at night. Then when going to bed it goes all the way down to my toes and especially my big toes. The past 10 days I have used Mirapex which works about 90% but so tired in the AM.

Then another thing is that I have no insurance and the price of Mirapex is about $270.00. I cannot afford that . So today I stopped at Wal-Mart and got a bottle of Melatonin for $6. I believe I will take 2 Aleve pills and 1 Melatonin and take them about out 30 minutes before going to bed. I sure hope it works.

I have also got up during the night and used Bio Freeze on them. At least I get to sleep. I keep my wife awake at night. Do you have a remedy for me that is inexpensive?

Mirapex and Requip are the drug of choice and the only two drugs that have been approved for RLS. Requip recently became available in the generic form (in May 2008) and may be significantly cheaper. It is very unlikely that melatonin and Aleve will help you (although anything is possible) nor are there any over the counter treatments (cheap or expensive) that will help RLS.

There are other classes of prescription drugs that are cheaper. They include generic gabapentin and the opioid painkillers (which are generally quite safe when used appropriately under a doctor's supervision).

Sent: Saturday, October 25, 2008 3:23 AM
Subject: Aspartame worsening RLS?

I am writing to you to let you know that I think I have discovered the culprit causing the stabbing pain in my legs plus leg aches, uncomfortable stomach with slight cramps, headaches, and my tinnitus worsening.

ASPARTAME!!!!!!!!!!

Of course, this is my theory but all my checking on the internet seemed to back this up. Since off of it my first three problems have gone away.

I had forgotten that some time ago I was having problems with going off the deep end with my husband and for no reason at all. Just would flare up and then found out that was another symptom of artificial sugars. Stopped them and the problem no longer existed.

I appreciate how helpful you have been to me in the past with my RLS and and recommending that I take Wellbutrin instead of Celexa and Prozac. I have been on Wellbutrin for more than a month now and am doing very well.

Sandra B.

Aspartame has been blamed for many other troubles. The proof for most of these issues is unfortunately missing as not much research has been done. They only way that you can be sure that aspartame is the source of your problem is to stop it and see if problems go away (which you have done), the restart it and see if the problems return then go away with stopping it again. This may be more than you want to do to prove your point so just staying off the drug may suffice (as long as symptoms stay away).

Sent: Monday, October 27, 2008 3:42 PM
Subject: Anesthetics and RLS?

In two weeks I will be having an endoscopy examination. I understand that it is likely there will be an anesthetic administered.

I believe I have read that RLS sufferers have to be careful as certain anesthetics can worsen RLS. Does this only apply for major surgery which would be a deep anesthetic and which would last for a long time.

As my endoscopy is only a day procedure and the anesthetic is likely to be light and short, can I just go with the flow. I do not wish to arrive with questions etc about my anesthetic and end up not getting the procedure done because I get all complicated with the endoscopy nurse.

Usually during endoscopy they use anesthetics that do not worsen RLS. However, some add antihistamines that especially when given intravenously or intramuscularly can cause severe worsening. Therefore, you should give each doctor a copy of our free RLS medical alert card so that they can be forewarned as to which medications to avoid.

I am a 50 year old white female, pre-menopausal. I have been dealing with long restless, sleepless nights for as long as I can remember, I know I had it throughout High School. I have spent many nights pacing the floor due to the deep discomfort (dull pain), twitching and jerking of my legs. When I lie down and try to sleep I put my hand on my calf and can feel the muscles moving, sometimes randomly, sometimes in wave-like movements.

I did not receive any treatment for this until I read an Ann Landers or Dear Abby article that explained my symptoms almost completely. I took this article to my doctor at that time. Perhaps 12 to 14 years ago. At that time she started me on Klonopin 0.5 to 1 mg as needed.

I used it like that off & on for many years until about 6 years ago when I moved and saw a doctor after hoarding and divvying out my measly 0.5 mg tablets (30 of them) over about 3 years. At this time (6 years ago) the doctor order Klonopin 0.5 mg at bedtime. I did fine until about 2 - 3 years ago and had to increase it to 1 mg. Inadvertently, due to a back injury for which I was given Ultracet, I found the the Ultracet helped alleviate a lot of that deep discomfort which I would now describe strictly as pain.

At one point we did try Requip, but it did weird things to my vision. I also went to a sleep specialist briefly and was taking gabapentin which we were working the dose up to where it felt like it might be working, but I quit going because this doctor was more interested in putting me on CPAP for "sleep apnea" then he was with my inability to sleep due to my leg movement and pain.

Anyway, for some reason, now my doctor has reached a point where she doesn't want to give me the Ultracet any longer. She referred me to a pain management specialist and has left me high and dry with the Ultracet. I am afraid she is going to do the same with the Klonopin.
I do have appointments with both my doctor and a pain management specialist. I don't know if pain management specialists will take care of my restless leg syndrome. (I do have some chronic back pain which I have had for about 8 years, which has gotten worse over the last year) I went in twice in 15 months to my doctor for this back pain.

I also have migraines, which I was taking Imitrex for but am afraid to take more than one as it gives me chest and shoulder tightness. Plus I also take Wellbutrin for some depression, and am afraid of that Serotonin Syndrome. I had to see the doctor once this year for a migraine that I could not get under control with my usual treatments, (Imitrex x1, Ibuprofen, Excedrin, Ultracet) So she gave me a prescription for Vicoprofen and Compazine to use for that episode. And I called and she gave me one refill of each for a future occurrence, which I have had to use once, last month.

Do you have any suggestions for me...what should I do about this restless leg syndrome if I can't get a doctor that wants to give me the medication that works. I just keep remembering the many, many nights walking the floors at 2 -3 am for hours at a time, and having to work the next day. (I am a Registered Nurse, work on my feet all day, in the Emergency Room).

Terry S.

Klonopin is not one of my favorite RLS drugs (I use it rarely to never). As you have already found out, tolerance occurs (needing higher doses to get the same effect) as does dependence. The Klonopin usually does not help RLS symptoms but rather helps an RLS sleep (no symptoms while asleep, of course). There are better and safer sleeping pills (Ambien, Lunesta) to use for that purpose, if necessary. However, the best solution is to treat the RLS symptoms adequately so that you do not even need a sleeping pill.

You have not yet tried Mirapex (similar to Requip but might work better or worse) and that should probably be the next drug to try. Your doctor should have a Mirapex starter pack that lets you increase the dose appropriately. If that does not help, then you should consider going on a combination of gabapentin (Neurontin) and painkillers (opioids or Ultram - not Ultracet as the added Tylenol does not help RLS but may help your back pain). If gabapentin does not help or is not tolerated, Lyrica is another choice that often works well.

You may have to do a little work to find a doctor who is comfortable treating RLS with these unapproved for RLS medications (except for Mirapex). Typically, neurologists or sleep specialists may have the expertise and experience to treat you.

You should also download a copy of our medical alert card (on the index of our homepage) and give one to every doctor that you see. Drugs that you have already been given (such as Compazine) and many others (such as all the SSRI's) tend to worsen RLS.

Sent: Thursday, October 30, 2008 6:04 PM
Subject: RLS and weight gain

I am 53 years old and have had RLS for more than 17 years. I have been on everything known for RLS. Mirapax seems to work very well with RLS but I am gaining weight real fast never seen myself like this except when I was pregnant. Increased appetite specially at night. Can't stop eating. Have you heard of this side effect.

Any other suggestion? Have you heard if taking GABA at bed time might be helpful with RLS?

Unfortunately, some RLS patients do seem to gain weight with Mirapex. You could try Requip (which is similar and works on the dopamine receptors) which may or may not work better for you. Alternatives include gabapentin and painkillers (opioids or tramadol).

Sent: Saturday, November 01, 2008 3:11 PM
Subject: Can you help me?

I am 16 and I have been experiencing RLS for as long as I can remember, even as an elementary student, maybe even longer. When I was in middle school, doctors told me that the itchy uncomfortable feeling I experienced deep inside my legs were just growing pains. Though unsatisfied, my parents and I just excepted it as that and pretended it was not a problem. After several years, the sensation grew more intense and more frequent, but I was not growing.

Then, during my 8th grade year (when I was 14) my "growing pains" became a nightly annoyance that quickly turned from uncomfortable to painful within a year and a half. By the middle of my freshman year of high school, I was getting what I was now calling RLS everyday in my legs, and occasionally in my arms and lower back, and it was no longer itchy and uncomfortable at night, but painful as early as noon time only to intensify as the day went on.

I was unofficially diagnosed by a physician in the spring, but was not treated, because that doctor told me there was nothing she could give me because of my age. In August I went to another physician that I was more familiar with (she was my doctor since I was a child. But due to insurance and distance I had been trying out different doctors). She had a series of blood test done, and everything that could be associated with RLS was negative or normal.

By now, I experience RLS symptoms all the time, with some days and evenings being worse then others, but I experience pain in my legs and arms and sometimes my back. So then she sent me to a neurologist, who more confidently diagnosed me with RLS. My neurologist first put me on Lamictal, which gave me adverse side effects within a week .

This week he gave me a sample of 0.125 mg of Mirapex, that does not seem to be working. And my neurologist is being less than helpful as far as that cooperative effort goes. Now I am just frustrated and in pain, and don't know what to do. No one in my family is familiar with this syndrome and do not always know how to help me.

Monique

RLS is diagnosed completely from symptoms (see below). Blood tests are not helpful for diagnosing RLS but rather to rule out other problems (such as diabetes) which may present with somewhat similar findings.

Lamictal is not a first line drugs for RLS but may help some RLS patients. Mirapex is one of the two drugs of choice for RLS (the other is Requip) and typically, this helps over 90% of new RLS patients. However, as only 20% of patients receive benefit from Mirapex at .125 mg, you may need a higher dose (.25 mg or even up to .5 mg) before deciding that this drug is not the right one for you.

Sent: Sunday, November 02, 2008 12:11 PM
Subject: RLS and Mirapex

Mirapex changed my life. I had had RLS since I was small; I can remember crying while my parents tried rubbing my legs (which probably made the situation worse, but at least they believed me). For many years as an adult, I tried to describe the symptoms to doctors, but could not really explain what it felt like and they dismissed it. When I was married I had to sleep on the couch most of the time so I could press my bent knees up against the back of it in order to get some relief and sleep.

I tried every home remedy ever printed (except sleeping with soap). I'm 67 now. Two years ago, I told my doctor about the problem for some reason (I had given up on ever getting help long ago) and she prescribed Mirapex. It really was a miracle--for the first time I could go to sleep without the agonizing battle with RLS, and if I woke up I could go back to sleep without the same battle.

In the last few months, however, I have begun experiencing ten or so minutes of RLS shortly after I take the Mirapex. It is pretty severe, but nothing like what I have lived with all my life, as it goes away after those few minutes and I can sleep. I'm now taking .75 mg and I'm worried that Mirapex will stop being effective altogether or that it will make the RLS much worse. What is likely to happen, and if gets worse, what would be my options?

Margaret T.

You are on a high dose of Mirapex and you may be experiencing some paradoxical receptor effects (the transient worsening after taking the medication). It does seem that more problems tend to occur with higher doses of the dopamine agonists (Mirapex and Requip). It may be better to reduce your dose of Mirapex (to perhaps .5 mg) and add a painkiller (an opioid or tramadol) or anticonvulsant medication (like Neurontin or Lyrica).

Some combination of the above drugs should take care of your problems indefinitely. If you still have problems after reducing your dose of Mirapex (perhaps even further to .25 mg), then you might have to discontinue the drug and just use the painkillers and anticonvulsants.

Sent: Wednesday, November 05, 2008 7:11 PM
Subject: Re: RLS and Mirapex

Unfortunately, my doctor would be the last in the world to prescribe a pain killer of any sort. She's very leery of tranquilizers and opiates. I just went to this dose of Mirapex and didn't realize it was high. When I started on the drug, I couldn't take more than a quarter of a .5 mg as the first time I took a whole one it walloped me and I actually thought I needed to go to the ER.

Fortunately, the feeling passed and I went to the very small amount. Gradually, though, the RLS began to break through and I increased the dose. I didn't realize until you said it that .75 mg would be a high dose. I'll try cutting it back and see what happens.

Also, I was a sleep walker as a child and have had a strange experience night eating when I took Ambien a couple of times. Are other sleep disorders connected with RLS?

You may still want to consider Neurontin (which comes in the less expensive generic gabapentin) to help treat your RLS and enable you to reduce the Mirapex dose.

Sent: Thursday, November 06, 2008 5:33 PM
Subject: RLS questions

I am nearly 55 year old, a male and for a long time many years I have noticed that it is very hard for me to be in a car a long time as I feel the need to move my legs often. Airplanes such as a trip to Europe or coming back from Hawaii when it is a night flight is torture. A couple years ago I sadly had the window seat with a sleeping gentleman in the aisle seat next to me flying to England. I thought I was going to die as I could not sleep and I needed to move my legs.

I have noticed the last several years that not only do I have this need to move my legs but when I go to bed my lower legs and my feet in particular tingle and burn. I thought it was neuropathy caused by being on Prilosec for GERD interfering with my B12 absorptions for so long but all my blood test are normal for everything Iron, diabetes, thyroid, B12 all normal.

I met with a neurologist last week and I am now on my 4th Requip tonight, I took .25 mg the first two nights last night and for 5 nights in a row I will take .5 mg. Then for the rest of the month he has me on 1 mg.

Monday I am going in for a sleep study to see if I move my legs in my sleep and I think to see if I may have sleep apnea I do snore but I do not think I have sleep apnea.

So far I have had no side effects to the Requip but I also have not felt any difference, I know this is only night 4 I will be patient I am hoping Requip will help the burning and tingling as well as my need to move my legs. I am unclear if it will help all the symptoms or just my need to move my legs.

Gary L.

It may take .5 mg to 1 mg (or more to take care of your RLS. Let us know how you do.

I am a 40 y/o female, diagnosed with RLS in 2002. It has suddenly become almost unbearable in both my arms and legs. I am not able to sleep despite high doses of hydrocodone 15/750 mg every 4 hours, soma every 4 hours, amitriptyline 25 mg at bed, Neurontin 1800 mg a day, Cymbalta 90 mg a day, estrogen 5 mg a day and Ultram ER 200mg a day.

I have been diagnosed with lupus or fibromyalgia (they change it every couple of years), permanent neck damage due to a car wreck, migraines since I was 14, IBS and some other lesser things. My pain is going through the roof. Do you have any suggestions I could mention to my doctor?

LisaAnn Y.

Both amitriptyline and Cymbalta may worsen RLS, sometimes dramatically. Although your dose of amitriptyline is small, you are on a high dose of Cymbalta which may be responsible for your increased RLS symptoms, especially if these symptoms worsened shortly after increasing the Cymbalta dose.

Stopping these medications (and perhaps changing them to a more RLS friendly antidepressant such as Wellbutrin) may reverse your escalating RLS symptoms.

Sent: Saturday, November 08, 2008 12:20 AM
Subject: RLS worse with surgery?

If a person has RLS and has to have surgery, make sure they are not given Reglan for upset stomach. I didn't know this. I am controlled with Mirapex. I had to have surgery for an AV fistula. I almost ran out of the hospital. My legs wouldn't stop. I heard the surgeon say "get him to sleep fast". I find that Zofran is well tolerated.

This is unfortunately a very common problem not only with Reglan but with many other drugs. That is why we have a free medical alert card (that you can download from our homepage) that contains all the drugs that RLS patients should avoid. Print out several copies and give on to every doctor that treats you including any anesthesiologist who manages the drugs during surgery.

Sent: Sunday, November 09, 2008 12:59 PM
Subject: What works for me

I have struggled with Restless Leg for over 20 years and have finally found a method of control that works for me. I am posting this here in hopes that at least some component of what helps me might help someone else:

1. Mirapex is the drug that I get the best response from. I have tried several others and Mirapex works best for me. What has been the key in using this drug is finding dosing that is effective. I was on a .5 mg tab once a day but often did not get good control and taking even that much at one time caused some nasal congestion for me. Thru trial and error, I have discovered that 1 mg controls my symptoms greatly. BUT how I dose has made all the difference.

I take .25 mg 4 times a day; one dose when I get up in the morning, one dose at about 3PM, one dose around 7PM and one at 9PM. Dividing the dosing up this way has really helped control my symptoms a great deal and also I do not get the nasal stuffiness or stomach upset that can come along with Mirapex. I think taking that first dose in the AM has made a big difference. I know it seems like a pain to take 4 doses a day but once you get into a rhythm it is not too hard. If only there was a time-released Mirapex!

2. I have allergies and had taken antihistamines for years. I read somewhere that antihistamines can augment RLS, so I came off them and use a nasal cortisone and antihistamine eye drop to control my symptoms pretty well. It has made a difference. The few times I have HAD to take an antihistamine, my RLS seems to break thru pretty strongly.

3. I keep the caffeine limited...usually just a cup of coffee in the AM. I don't find that this is a big trigger for me, but if I really have too much, the RLS symptoms come back.

So that's it. I am hoping that the dosing I have figured out helps others. Right now I have a script for 1 mg Mirapex tabs and I just break each tab into quarters. I will probably ask my Doctor for a new script to take (4) .25 mg tabs a day when this one is done.

Joseph B.

There are a few RLS friendly antihistamines that you can use (Claritin, Clarinex and Allegra) safely. These are noted on our free RLS Medical Alert card that you can download from our homepage.

Sent: Tuesday, November 11, 2008 7:17 AM
Subject: Pain meds for RLS?

I've been reading these boards for several months now, after dealing with increasing RLS symptoms since a bad car accident two years ago. I've had RLS for years, but it was intermittent and I was able to manage it with aspirin. My mother also suffers from the condition. But in the last couple of years it has gotten progressively worse, to the point of not sleeping more than three hours a night coupled with daytime outbursts in which my entire body feels like it's vibrating and crawly and I just want to jump out of my skin! I work as an editor so I am on the computer all day, sitting, and when my RLS kicks in, that's hell.

Anyway, long story just a little shorter, I've tried everything so far: Requip, which caused horrible daytime sleepiness and augmentation; Klonopin, which worked ok but made me feel like a zombie during the day; Sinemet, which only resulted in uncontrollable jerking and depression. The last thing I tried was Mirapex, which seemed to help the RLS at night, but I had terrible insomnia, could only sleep two hours and then I was up and could not fall back asleep even with the help of low dose Ativan or Sonata.

After a month on Mirapex, I had a case of daytime RLS so bad that I took a Vicodin just for some relief, which worked wonders. When I had a surgery a year after my accident, which was a condition caused by the accident, I was on pain medication and it really has been the ONLY thing that works on my RLS and works consistently. So, now my doctor is trying me out on OxyContin, 10 mg twice a day. We're trying it for seven days. I took one last night and it was the first time I've slept through the night in a while. Also, I do not experience drowsiness with narcotics for some reason if take during the day.

Can I safely take this amount long-term? How I do I avoid dependence/tolerance issues? And can I just take it as needed or do I need to stay on the scheduling dose of 1 pill twice daily? He's got me scheduled to see a couple of neurologists but my appointments aren't for another couple of months (they're very busy).

I'm just so tired of this merry-go-round, and I don't want to become dependent/addicted to something, but I can't continue not sleeping and not being able to sit at my computer during the day.

OxyContin (oxycodone) is a reasonable choice for RLS. I would suggest that the shorter acting generic version (oxycodone) might be more appropriate as you might be able get by with less medication (oxycodone comes in 5 mg tablets). OxyContin is designed to last 12 hours to control pain (or in your case RLS symptoms) so unless you have RLS around the clock, you are taking more medication than you need. You might only need 2-3 of the oxycodone taken at about 6-8 hour intervals, timed to treat your RLS symptoms when active.

Typically, when opioids are taken in doses just adequate enough to treat pain or RLS symptoms, dependence/addiction occurs very rarely at the doses recommended (generally less than 30 mg of oxycodone). The exception would be people with a history of drug abuse or previous dependency problems.

Sent: Wednesday, November 12, 2008 9:21 PM
Subject: Help for my hubby!

Help! My poor, wonderful husband has been suffering from RLS for the past 13 years. However, he has really been suffering terribly for the past two! I sent him to the doctor, who drew labs and prescribed iron 3 times per day and Requip at at bedtime. However, this just is not working. I have tried to get my husband to lay off the Mt. Dew, but he won't and he gets hardly any sleep at night. He can never take naps during the day, EVER! Even, if he is "sleeping" at night, he kicks like crazy all night long and doesn't even know it.

The problem is that nothing seems to be working. Should I send him to a neurologist or for a sleep study? Can his family doctor do anything? I feel so sorry for him! To make matters worse, his job is crazy hours! He goes to bed about 9 PM and has to get up at 2-3 AM four days a week. I love him dearly and want to keep him around forever! So, what can we do? What about Klonopin?

I had RLS and did not even know it, I just knew I felt like crap and told my doctor I thought a sleep study would be a good idea, he agreed and they found out I have central nervous system sleep apnea with RLS and 0.5 mg of Klonopin works like magic for me! But I never knew I had leg fidgets. My husband's RLS starts about 7 PM every night like clock work!

Although Klonopin is listed as one of the drugs of choice for RLS in older (out of date) textbooks, it is not really one of the current recommended drugs for RLS. The drug does not typically relieve RLS symptoms but rather just helps most RLS patients fall asleep. The drug has a half-life of greater than 40 hours so it can cause next day sedation that is often not obvious to the patient.

Requip is one of the drugs of choice for both RLS and the leg kicks associated with RLS (PLMS). It is hard to give you specific advice for your husband but it may be that he needs a higher dose of Requip or even multiple doses during the day (we often have patients take the drug up to 3 times daily when treatment for daytime symptoms is necessary). If that does not relieve all his RLS/PLMS symptoms, then he may need additional RLS medication such as anticonvulsants (Neurontin, Lyrica) or painkillers (opioids or tramadol).

Each RLS patient should be treated individually depending upon their needs and responses to medication. However, it is important to make sure that the treating physician is very familiar with treating the disorder. Typically, neurologists or sleep specialists are the ones with the most expertise and experience treating RLS but you should make sure that the doctor does treat a lot of cases (especially the more difficult ones). Most patients should do very well with many treatment options available today (assuming their doctor knows how to use these tools).

I work for the US Army and am stationed in Germany. We have to see Doctors on the local economy. Today, my doctor diagnosed me with RLS and prescribed Restex (100 mg levodopa, 25 mg benserazide). I tried to find info on the drug and any interactions with other drugs but to no avail. Apparently it is a German drug.

Christina V.
Vilseck, Germany

Restex is only available in Europe and is approved for the treatment of RLS. Here is the USA, we have a similar drug, Sinemet that has the same levodopa but it is combined with carbidopa instead of benserazide (these added drugs allow the levodopa to act better and longer but are not actually active RLS drugs). The problem with levodopa containing drugs is that with time (often a few months) they cause worsening of RLS (called augmentation) in over 80% of patients.

Therefore, we no longer recommend the use of levodopa containing drugs on a daily basis (they are fine when used intermittently) but rather recommend Mirapex or Requip (the drugs of choice both here in the USA and also in Europe). One of those drugs would be a much better choice.

Sent: Sunday, November 16, 2008 8:52 AM
Subject: Mirapex, Sinemet, and Ambien: a reasonable regimen?

I wanted to ask you about my current regimen, and particularly whether you think there may be any dangerous interactions among my medications. Let me start with my RLS history.

I am 59, and in reasonably good health overall. I exercise regularly, have low blood pressure, and reasonable weight and cholesterol levels. My RLS symptoms started about 5 years ago. They were intermittent, and I didn't know what they were for about a year, until diagnosed by my internist and a physiatrist. For that first year, I was usually able to control the symptoms, which started up upon retiring to bed, by getting up and doing several dozen toe raises.

When that no longer worked, my doctor prescribed Requip, which I took for about 2 years. It controlled symptoms very well, and my sleep was pretty good. I also quit caffeine entirely for a year during that time, and it allowed me to reduce the Requip dose from 2 mg. down to .5 to 1 mg. every evening. (My RLS has always been confined to evening and night symptoms, with only occasional late afternoon symptoms if I take a nap then.) That was good, because I had fairly strong sedative side effects from the Requip. I also tried acupuncture during that time, which seemed to help some for awhile, then stopped helping. I also tried horse chestnut, which also seemed to help for awhile, then stopped working.

I found that life with no caffeine was just not working - I do a lot of mind work in my job, and needed more mental clarity than I had. So for the last few years I drink black tea on getting up, then 2 cups of green tea during the day. I allow myself some espressos on weekends. This seems to work okay, and did not require a major increase in medication.

However, independent of my caffeine intake, I have found that I need to increase my med intake every so often, so it appears that tolerance develops. Because of the Requip side effect issues for me, I switched to Mirapex about 1 1/2 years ago, which has worked as well as Requip in controlling symptoms, with somewhat less sedation. Again, tolerance has been an issue, so I had to build up to 1.25 mg per evening. But with either of those dopaminergics, I found that my evenings were shot. I split my doses, taking half at 8 PM, and half at 9. I wasn't able to go out in the evenings, because I felt too impaired to drive safely, or to enjoy the evening out. For a year, I also tried codeine along with Mirapex (I think it was 15 to 30 mg of codeine without Tylenol). That was okay, but did not seem to add much additional relief, and merely added to the evening confusion. So I stopped the codeine about 10 months ago.

So about 6 months ago, I found a partial solution to the lost-evening problem: I added a moderate dose of Sinemet (1 10/100 tablet) 1/2 hour before bedtime, and shifted the bulk of the Mirapex to later in the evening, and am taking somewhat less Mirapex. Sinemet is much quicker-acting than Mirapex or Requip, so my current regimen is as follows:
.25 or .375 mg. Mirapex at 8 PM.
1 Sinemet plus remainder of Mirapex (total 1 mg per day) at 1/2 hour before bedtime. This is usually 10 - 10:30 PM, but can be as late as 12 or 1 AM, if out in evening.

This has worked quite well for me, and gives me more evening time with less sedation. It allows me to drive safely in the evening when I do go out. Interestingly, this combination has NOT resulted in any noticeable augmentation or rebound. The only drawback I have found is that Sinemet has a somewhat simulating effect on me, making it difficult to get to sleep. So I have been taking 5 mg of Ambien 20 - 30 minutes after the Sinemet dose, then to bed shortly after. This has worked quite well for me, with symptoms under near-total control, and a good night's sleep nearly every night. Occasionally, that dosage plus some toe raises and stretches is not enough, so I may take another 1/2 to 1 Sinemet tablet, and within 1/2 hour, the symptoms are under control and I can sleep.

Does this seem like a reasonable regimen to you? Do you see any issues with it, such as interactions among the Sinemet, Mirapex and Ambien? Anything I should watch out for? I have noticed that my memory seems to be somewhat worse than in previous years, but being 59, this may just be age-related. Could Ambien be affecting memory? I know that you do not recommend Sinemet as a first-line therapeutic for RLS, but as an adjunct to Mirapex, is it reasonable? (I apologize for the long email; I wanted to give as full a picture as I can.)

Peter

I do have some concerns with your current medication regimen. You are using a lot of medication to control your RLS and to control the side effects of your medications (Ambien to help you sleep). Although you have not yet experienced augmentation from the combination of Mirapex (your dose is getting on the high side already) and Sinemet (the usual dose of Sinemet when taken alone that typically causes augmentation is one or two of the 25/100 tablets per day but it is not known what is safe while also taking Mirapex), you may develop problems with time.

What would probably work better and be much simpler is taking one oxycodone or methadone (preferred by me but hard to get other doctors to prescribe this drug) in the evening. This might take care of all your RLS problems with one drug. You may or may not need a dose of Mirapex at bedtime with the opioid.

Sent: Monday, November 17, 2008 8:43 PM
Subject: Re: Re: Mirapex, Sinemet, and Ambien: a reasonable regimen?

Opioids are not a good option for me. Based on your concerns, I will try cutting back on the Sinemet, and only use it to augment the Mirapex when I am going out for the evening, which is not all that often - perhaps once a week or so. And I will try to get by on no more than 1 mg Mirapex every evening, and see if I can get by without Ambien except on Sinemet evenings out.

Do you think that the Rotigotine patch might be a better option for me? Does it tend to produce drowsy or sedative side effects during the day?

Peter

Decreasing the Mirapex with intermittent usage of Sinemet may work for you. It may be helpful to add an anticonvulsant (Neurontin, Lyrica, etc.) which at low doses may help the Mirapex and cause minimal side effects.

Rotigotine would be a good choice but is no longer available in the USA. It may still be purchased from Britain (or possibly Canada) but that makes using it much more difficult. A small percentage of users may get some sleepiness from this drug but the vast majority do very well with Rotigotine.

Sent: Monday, November 17, 2008 10:32 AM
Subject: RLS, HELP ME PLEASE~~~

I am 36 year old female and I was diagnosed with RLS in 2001. I was given Sinemet at first which worked very well. Then when the prescription ran out I was given generic Carbidopa/Levodopa 25/100 and have been taking it everyday 1 time a day at night before bed until a couple years ago when I had to go to 2 tablets 25/250 at bed time because I was being woke up in the middle of the night by RLS. Now unfortunately I am up to 3 times a day 25/250 because now my legs start around 5 pm really bad like a pulling/drawing feeling. Sometimes they even start earlier while at work.

I am thinking it is because I work in an office and sit for hours and don’t get to walk around much so my legs just go nuts. I have noticed in the past couple of months I am awakened around 3am by my leg drawing pain and cannot get back to sleep because I have already taken the recommended 3 pills.

My doctor did try me on Requip once but that did not go well at all. I had only been on it a week and by the weekend I called him crying and begging to take the Carbidopa/Levodopa because I had not slept at all. I only have 2 cups of coffee a day and that is before 10 am in the morning.

I do not over indulge in chocolates or have any other caffeinated beverages through out the day. I admit I do not walk a lot but I am a single mother of 4 and when I get home I am on my feet until bedtime which because I am awakened at 3 am is usually 8-9 pm on an unfortunate day it is 10-11 pm. I do have an under-active thyroid which I take 112 mcg Levoxyl for everyday once a day. I also have reflux which I take omeprazole once a day for.

I have been reading your patient letters and over and over I see that the Carbidopa/Levodopa 25/250 meds that I take for RLS can have the rebound/augmentation effects on patients. I swear I think that is what I have been going through for years but because my physician is not educated on RLS he cannot help me as much, and I know he is busy with other patient problems which are far worse than mine so I am trying to get more educated on my condition to help him. I have gone thru a sleep study which they said that I had RLS (I already knew and was on medications for it) and they said that I had mild seizure activity in my sleep which they said wasn’t bad enough to do anything about.

Since Sinemet (Carbidopa/Levodopa) is not recommended to be used for RLS on a daily basis and I have already established that Requip is not for me, what do I do now? I am on the highest dose of Carbidopa/Levodopa 25/250 and am up to 3 tablets a day! I AM 36 YEARS OLD!!!!!! I hate RLS so bad.

You clearly are suffering from both augmentation (earlier onset and worse RLS symptoms) and rebound (RLS occurring in middle of the night not covered by the short acting Sinemet) from Sinemet. The best thing to do is to get off the Sinemet. However, if you just stop the medication, you will have trouble (marked worsening of RLS symptoms for a week or so). Your doctor should help you by providing a reasonably potent opioid (Vicodin or better yet, oxycodone) to cover you for the withdrawal period.

You will then need a replacement drug for the Sinemet. Mirapex is a reasonable choice, if you tolerate this drug as it is somewhat similar (but different enough to make it worth trying) to Requip. If that does not work, you may need either daily opioids or anticonvulsants (or a combination of both).

Unfortunately, I do not know of any RLS specialists in your area and your own doctor may not feel comfortable instituting the above treatment plan. I neurologist or sleep specialist who sees a lot of RLS patients may be able to help you.

Sent: Tuesday, November 18, 2008 6:17 AM
Subject: RE: RLS HELP ME PLEASE~~~

I forgot to mention that I have degeneration in my C4 and C5 and a herniated disc due to a neck accident last year, which has exacerbated my RLS. A paramedic friend of mine believes that I have secondary RLS due to my genetic degeneration. He has been helping me decipher the medical terminology with all of the information that I have been reading and helping me understand why certain medications are not working for me. He had read in an article on line about Ibuprofen helping reduce the swelling in neck and back injuries and lightening the nerve impulses which could make my RLS symptoms less irritated. I am probably not explaining this as well as he could but hopefully you get what I am saying.

So anyway last night as usual I took 1 Carbidopa/Levodopa 25/250 around 6 pm as I usually do just to make it thru the evening and then around 8pm I took 800mg of Ibuprofen and then at bedtime 9:30pm I took the last 2 Carbidopa/Levodopa 25/250 prescribed by my doctor. I was awakened yet again at 3:40 am but I was able to go back to sleep and continued to sleep thru until 6:15am, which was different than the night before. I am going to try it again tonight and Wednesday night as well just to see if the Ibuprofen reducing the swelling is making the difference.

Yes I totally agree that I need to get off the Sinemet, and I also agree that my doctor may not feel comfortable with this change only because he doesn’t have a lot of education in RLS. I myself am not comfortable with the Vicodin or oxycodone, but that is because I do not like taking meds anyway. When I was told that I had to take the Levoxyl for the rest of my life I felt like I was being punished, it just seems so unfair. I am too young to be on meds everyday of my life. I would rather find natural ways of dealing with the medical issues instead of taking a pill, but I understand that sometimes that just isn’t possible.

My doctor does listen he is very attentive but he just does not know a lot about RLS, but he takes great care of me other wise. He cares and listens and that is the greatest part of the job that he does.

It is possible that your disc problem may be exacerbating your RLS, but this is likely a minor issue. Typically, the ibuprofen should only provide very minor relief for your RLS.

You are correct that it is not fair that some people need to take medications while others get off Scott free. But life is not fair or else why would Bill Gates be worth more than $50 billion while most others possess less than a tiny fraction of his wealth. You can try non-medical treatments (which do help some patients) but for more severe RLS, medication is usually necessary to get adequate relief.

Sent: Monday, November 17, 2008 10:51 AM
Subject: Pregnancy RLS question

I want to have another baby. My RLS is intense and started at week 20 of my first (and only) pregnancy in June 2007. It was torture. I took .5 mg of lorazepam for most of that remaining 20 weeks. I still take it (.5 mg, 1-3 x day). I started Requip in December 07. In September 08 I was tapered off Requip due to augmentation.

As I stopped the Requip it became obvious that I now have some degree of PLMS as I now twitch and have some involuntary movements in my hands, arms, legs, toes, fingers, and torso. I took Neurontin for most of October and it worked pretty well, but I still needed a little lorazepam during the day. Last week I tried Tylenol #3 (with codeine) instead of Neurontin for a week, then tried to taper my lorazepam, so I could start an IVF cycle. I tapered too fast and ended up postponing the IVF cycle due to withdrawal sickness and INSANE RLS.

I've seen methadone recommended as category B for pregnancy. But it scares me. How often do babies of patients on the low dose taken by RLS patients have withdrawal symptoms? Also, I don't think my fertility doc would approve of me taking methadone-he might not even take me as a patient any more. However, my RLS is 24-7 and I cannot function without medication so it is not an option to go without medications.

I've heard it is nearly impossible for addicts to taper off of methadone. Is this true of RLS patients on low-dose also? I don't want to be stuck taking it for the rest of my life until I have to.

Helen D.

Pregnancy and RLS is a very difficult situation. We would of course prefer to give all pregnant women no medication at all to keep the babies safe. However, with RLS, that is sometimes not feasible. Although methadone (oxycodone is another choice) sounds scary, it is actually one of the better drugs to use in this situation. We typically use doses of about 5-15 mg per day while the opioid addicts average 80-120 mg per day (and still seem to get through their pregnancies without too much problem).

Lorazepam (Ativan) is a benzodiazepine that usually does not relieve RLS symptoms (except in a very small percentage of RLS patients) but rather helps RLS patients fall asleep. However, it is a category D drug for pregnancy so in that respect should not be used for pregnant women.

We rarely have problems getting RLS off methadone except that the RLS gets worse again. As noted above, the doses used are much smaller and RLS patients do not share the issues that make it difficult for drug addicts to stop their methadone. Once your pregnancy is over, you could add or switch back to Neurontin or try Lyrica.

Sent: Monday, November 24, 2008 8:49 AM
Subject: Re: pregnancy RLS question

Is the methadone withdrawal very painful for folks withdrawing from a low dose of methadone? Are there any drugs that are given to help with the withdrawal symptoms?

Some addicts have posted that the withdrawal is totally hellish. If you do it very slowly I imagined that it would not be that bad . . . am I wrong?

I'm reading that many babies are born healthy with no withdrawal but some really suffer when they are born and the mothers are full of regret that they put a baby through that experience. Do you have any information about this?

My regular OBGYN is fine with patients taking methadone. However, my reproductive endocrinologist is not comfortable. I have an appointment with a counselor at a peri-natologist's office to find out more about the risks to the child.

At the doses used for RLS, I have seen little to no problems with withdrawal from methadone. I have had only a few pregnant women use methadone but typically, the methadone is withdrawn before delivery and I have not heard of problems with the baby.

I am not sure why the reproductive endocrinologist would be uncomfortable while the OB is fine with this treatment.

It would be great if someone would publish a study- any study--qualitative, quantitative, observational (probably not enough subjects to do a randomize clinical trial) on pregnant women with no addiction history with RLS taking opiates at low doses. The only studies out there that I find are about addicts, many of whom fall of the wagon during their pregnancy.

Sent: Monday, November 17, 2008 12:27 PM
Subject: MIRAPEX TO REQUIP

I am currently taking five doses of 0.125 Mirapex starting at noon and ending at bedtime. Because I have used Mirapex for more than a decade I feel I am having rebound. It isn't working nearly as well as it used to. It is in my arms also and generally pretty bad most of the day.

What do you think the best way is to switch to Requip for at least while? I don't think their starter kit sounds like enough for me. How would I get along only taking it 3 hours before bedtime?

Marge in Colorado

It sounds like you are getting augmentation rather than rebound from the Mirapex. You could change to Requip but there is a reasonable likelihood that it too may cause augmentation at an effective dose (roughly Requip .25 mg to .5 mg equals Mirapex at .125 mg).

However, before starting Requip, it would be wise to take a drug holiday from dopamine drugs for about 2 weeks. The RLS will get quite severe in this withdrawal period typically requiring a strong opioid (Vicodin, oxycodone) to help you get through it. After the two week period, you could try taking the Requip just 3 hours before bedtime and see if that works (there is little chance of one dose of Requip helping if you do not take a 2 week drug holiday).

Sent: Monday, November 17, 2008 5:04 PM
Subject: Mirapex with Zantac?

I have been taking Mirapex for about 2 months now. I was reading information on it online. I read that you should tell you're doctor if you are taking ranitidine (which I am on 300mg twice a day) What are the side affects that I should look for by taking both of these drugs?

Mirapex is not metabolized but rather simply eliminated through the kidneys. As such, drugs (such as ranitidine/Zantac) that inhibit the tubular function of the kidneys may slow down the elimination of Mirapex and increase blood levels for a given dose.

However this is really not an issue as long as you do not frequently stop and re-start the drug. If you take the same dose of ranitidine daily, your blood levels of Mirapex will remain the same. As Mirapex is used in low doses (compared to its use in patients with Parkinson's disease), a small increase in blood levels is really not an issue (again, as long as the ranitidine is not taken intermittently which may then cause the blood levels of Mirapex to fluctuate).

Sent: Thursday, November 20, 2008 10:31 AM
Subject: Awesome site

I have RLS- my neurologist prescribed Requip and it helped for a while. Was on 2 mg at bedtime.

Within the last 3 months, I have started taking Seroquel for depression. I have found that this is making my skin just crawl. It starts at my knee and I just have to move that leg or I will go bonkers.

I take the following meds for depression/anxiety

Effexor XR
Pamelor
Lamictal-seizure disorder
Seroquel 300mg @ bedtime and Seroquel 50mg 1 every 4 hours PRN

What medication would be next in line to try? How effective are the pain meds that were mentioned in the article? Which one is front-line? Why does the Seroquel make my symptoms worse?

Some nights/ daytime I jerk so hard I think I will break a limb.

Matt from West Union, Iowa

It is not fully understood why drugs like Seroquel make RLS worse but that is a very common problem. If the drug is necessary to control your depression, then you must work around it. However, the Effexor also tend to worsen RLS while Pamelor may be more neutral. Wellbutrin and possibly Abilify may be more RLS friendly choices.

Requip is a first line drug for RLS and so is Mirapex. They are both very good drugs but some patients do better on one or the other.

Sent: Sunday, November 23, 2008 8:56 AM
Subject: RLS augmentation from ropinirole?

I have been reading the many letters on this site. I have gathered extensive info on RLS since the onset of mine some 8 years ago. For the past 2 years I have been on Repreve (ropinirole or Requip here in the USA) & now at 1mg. I am finding the symptoms starting again at odd times during the day & now wakes me up at around 5am. Unfortunately I can't stop taking the antidepressant citalopram (Celexa) so I don't know where to turn.

I saw a neurologist some weeks ago but I knew most of what she told me. My GP is learning more now but still this augmentation is new territory for me. I can't relax in the afternoon if I have time off work & I have removed all the know foods etc which can aggravate the symptoms. I just feel lost as I think most doctors are just feeling their way in this subject. Can you possibly give a suggestion to relieving my problem?

Although, you certainly could have augmentation, that is not yet completely clear from your description. Typically, augmentation starts within months of starting or increasing a dopamine agonist (such as your Repreve) not after almost 2 years. Also, the RLS symptoms should be occurring earlier, but at a predictable time rather than at odd times. Until that is settled, it may be difficult to decide what to do. It would be easier if you had other symptoms of augmentation (such as RLS extending to the arms, increased intensity of symptoms, decreased effect of drug, etc.).

You may want to discuss changing the citalopram to Wellbutrin (an RLS friendly antidepressant) which may dramatically help your RLS symptoms.

Sent: Monday, November 24, 2008 11:03 PM
Subject: Re: RLS AUGMENTATION

I have recently increased Repreve from .5 mg to 1 mg, have the RLS in my arms periodically & have noticed the symptoms getting more intense than before. As you say, it's difficult to know if it's augmentation. I will discuss with my GP about changing to Wellbutrin though.

Over all I just feel as though my whole self if wired up, if that makes any sense.

That does sound more like augmentation. Let us know how you do. It may be necessary to decrease your dose of Repreve or change to Mirapex (pramipexole).

Sent: Saturday, November 29, 2008 7:11 AM
Subject: Huge Relief

I have suffered with the curse known as RLS for almost 20 years. Literally an episode every night, without exception, and could only be minimized or eliminated with Requip and/or Ambien. Many times the combination of both. I took this medicine every night, or there was no sleep, or about 3-4 hours only.

However, in the past 6 months I have taken 6 pills, total. RLS still remains, but the relief comes in a very unusual way, a quite pleasant way I might add.

Every night, for a period of about 30-45 minutes, my partner caresses/scratches my legs, the entire length. This totally eliminates the symptoms, pretty much every time. No meds whatsoever, and I was a person with severe (every night) levels of RLS.

Is this common ?

SB

Although that is not typical for those with severe RLS, it is common for patients with mild to moderate RLS to get relief from counterstimulus measures such as massage, tickling, etc. Others commonly use stretches or leg exercises, vibration devices or hot/cold water to help eliminate their RLS symptoms.

Sent: Sunday, November 30, 2008 1:44 PM
Subject: RLS and problems with Mirapex?

I have been taking Mirapex for about three years and it has been very effective for me. I take one low dose pill in the afternoon and two an hour or two before bedtime. So what's my beef? It made me break out in an itchy rash until I learned I had to quit all milk products and anything that contains wheat, even when I did this

I still get and itch in my lower back and I have learned that I can control this if I empty my bladder often. It has also caused erectile dysfunction. Is there anything I can take to counteract the itch and maybe eat a little ice cream or bread and gravy?

I have never had any problem with food or any other problem until I started taking Mirapex. I am very well satisfied with the medication except for the above.

If you are truly allergic to Mirapex it would not be a good idea to continue taking the drug (even if we could give you something to treat the allergy) as with time your may develop more severe reactions to this drug.

It is a much better idea to stop the Mirapex and consider changing to Requip (which works similarly to Mirapex but has a different allergy profile).

Sent: Sunday, November 30, 2008 6:16 PM
Subject: Re: RLS and problems with Mirapex?

I tried Requip first with the same reaction. In fact I tried it two more times. Maybe you could suggest something else I could try. This works so good I hate to quit but the itch does bother me.

I have talked to 3 different doctors and they don't seem to have any other answers except to drug me and that does nothing for my RLS.

The next choices to treat your RLS are anticonvulsants (Neurontin or Lyrica) or painkillers (tramadol or opioids). Any of these have a great chance of safely taking care of your RLS symptoms with little chance of side effects like itching.

Sent: Thursday, December 04, 2008 11:47 AM
Subject: Interesting RLS relief with Red Bull?

I have had RLS for about eight years and take Requip for it. But something very interesting just happened. I was having a RLS episode today and happened to be drinking a can of Red Bull. I had never had any of this before and just thought I would try it to see if it would make me more alert after lunch.

So I was drinking it and suddenly realized the RLS had gone away without me taking any Requip. On the label it says it has Niacin 100 % Vitamin B12 80% Vitamin B6 250 % pantothenic acid 50%. So I will surely try this again and see if it does help on a consistent basis and let you know.

It is difficult to explain what happened especially as Red Bull contains a lot of caffeine which typically worsens RLS symptoms.

Sent: Sunday, December 07, 2008 10:06 AM
Subject: RLS question

I've suffered from RLS since childhood. In the last six months it's gotten a lot worse, as it is affecting my sleep now, and has moved to my arms (it only used to be in my legs). Anyways, my question is regarding leg pain. For the last few months I've had bad leg pain, particularly in my calves.

I have a history of SLE (which has been quiet for years, not taking anything for it), but I had blood work done to see if it was flaring (I used to get leg pain with the lupus). My ANA was negative, so it's not that. Can the RLS cause the leg pain?? It hurts all day long, sometimes very badly. The rheumatologist gave me 5mg of Vicodin to take, which does help, but some days even that doesn't take care of it. On days my calves really hurt, they will even be tender to the touch (like a badly pulled muscle).

I'm just trying to decide if the worsening of RLS is a coincidence, or if the leg pain is somehow connected to the RLS. Any help would be greatly appreciated. PS I have never taken anything for RLS, until a few months ago it was only occasional, however I have noticed the Vicodin helps the leg movement/uncomfortable sensation in my arms and legs. Would Mirapex or another dopamine agonist help the pain (if the pain is caused by the RLS)??

It is difficult to answer your question as pain is associated with RLS in about 20% of patients but you may have other leg pain (even with a normal ANA) that could also worsen your RLS. Vicodin does relieve RLS and most non-RLS sources of leg pain. You could try Mirapex or Requip to see if they help your RLS and see if the leg pain is also relieved (in which case, the leg pain would be associated with RLS). Typically, leg pain caused by RLS would not result in tender legs/muscles.

Sent: Monday, December 08, 2008 9:36 AM
Subject: Pending surgery will worsen RLS?

I'm 67 and have had RLS for 25 years. I've just learned that I need to have surgery on my foot behind my big toe and I'm worried that this will cause a worsening of my symptoms. Might I escape this since the surgery is so far down on my body, and if not would the worsening be permanent?

Although many RLS patients report worsening of their symptoms after trauma (such as major surgery, especially spine surgery), it is quite unlikely that surgery on your foot should cause an exacerbation of your RLS. Anything is possible but the odds are very much in your favor.

Sent: Sunday, December 14, 2008 11:19 AM
Subject: Severe RLS

I've had RLS since my teens and I am 57 now. I've tried Mirapex, Sinemet; am now on Requip, Neurontin and Klonopin. I am a zombie all day. My sleep is a little better but not much. I still walk all night. I can't sit for any length of time without "jigging". Sometimes it is so bad that the ache and pain in my legs from the constant movement is enough to push me over the edge.

Crying doesn't help, but I do a lot of it. I am also on Wellbutrin and Cymbalta for depression. I am now going to try acupuncture and deep tissue massage. all I know is I am afraid of methadone. My legs start to move around 2 or 3 in the afternoon (which is the worst time) and I can't sit or lay down. I stand on the train, I stand all evening when I watch TV, etc.

You are on 3 drugs which can cause sedation so it is no wonder that you feel like a zombie all day. Klonopin really has little or no role in RLS. It is a drug that you should discuss weaning off with your doctor. Neurontin also causes drowsiness (you do not say what dose you are on). Often Lyrica works better. It would be easier to give you advice if we knew the doses of your drugs and the times of day that you take them.

Cymbalta also tends to worsen RLS so that may be part of your problem.

You might not need opioids like methadone if you can correctly adjust your current medication. However, if you do need an opioid or painkiller, there are other choices.

Sent: Sunday, December 14, 2008 1:57 PM
Subject: RE: Severe RLS

I take:

Neurontin - 300 mg 3x a day;
Requip - 4 mg 3x a day;
Klonopin - .25 3x a day;
Cymbalta - 90 mg 1x a day;
Wellbutrin - 450 mg 1x a day;
Glucophage - 750 mg 2x a day;
Lipitor - 10 mg 1x a day;
Altace - 5 mg 1 x a day;
Nexium - 40 mg 2x a day.

I used to take Lyrica for my diabetic neuropathy, but they took me off it when they put me on the Neurontin. the Lyrica worked better. Also, when they took me off the Mirapex and put me on the Requip, within two weeks my RLS was worse but they said to hang in there.

You are on a very high dose of Requip which might (in addition to your other medications) account for your daytime sleepiness. Since Mirapex worked better, why did they change it to Requip?

The Neurontin dose is on the low side but as I stated before, Lyrica often works better as it did for you, why did they change it?

Klonopin is most likely causing you to be sedated, especially when taken in conjunction with the other medications. This would be a great drug to discuss weaning off with your doctor.

Once you have tried my suggestions, you may not need to consider opioids.

Sent: Monday, December 15, 2008 5:04 AM
Subject: RLS treatment for my husband?

My husband is struggling with RLS treatment. He has consulted 2 sleep specialists and a neurologist, a sleep study confirmed the diagnosis and lab tests excluded iron deficiency and treatable causes for peripheral neuropathy. Treatment with Requip caused severe augmentation.

Clonazepam was great to give him a good night sleep but caused severe depression and loss of sexual drive and function. Gabapentin improved some the RLS but also caused sexual side effects, even though sexual function had returned to normal during clonazepam washout.

Now he is on Mirapex, 3rd week of 0.25 mg and the leg symptoms have improved by about 50% but he has severe insomnia not related to leg symptoms, with numerous nocturnal awakenings accompanied by racing thoughts and difficulty to resume sleep.

He is able to function well as long as he is active, but immediately falls asleep once he tries to watch an evening TV program and does not respond to attempts at keeping awake. After a 60-90min. evening snooze he remains attentive for a while, then takes his Mirapex dose before going to bed. Changing the time of Mirapex has not changed the sleep problem.

We are desperate and not sure what the next option should be. He will communicate with his physicians, but we would also appreciate your suggestions.

Your husband clearly is not a good patient for the dopamine agonists, Mirapex and Requip. He might do well with Lyrica (similar to gabapentin but usually fewer side effects). However, it is likely that he may have to add painkillers (opioids or tramadol) at the lowest dose which eliminates his RLS symptoms.

Sleep studies do not confirm or really help much at all for diagnosing RLS. They do pick up PLMS which typically occurs with RLS (in over 85% of RLS patients) but also occurs very often in people without RLS.

Sent: Monday, December 15, 2008 2:46 PM
Subject: Mirapex for RLS

In October 2008 I started taking Mirapex for Restless Leg Syndrome. It has helped a lot and I am wondering if I can stop taking it for awhile until the symptoms cause me pain again. In other words, do I need to take it forever? Has there been a study of stopping and starting again without any negative results? Like most people my age (71) I don't want to take too many prescriptions.

Appreciate any information you may be able to provide.

Robert K.

Typically, RLS tends to stay the same or slowly gets worse for most sufferers. Although some do get spontaneous remissions (perhaps from stopping medications or other things that worsen RLS or improving their iron levels), most find that RLS is a life long continuous problem.

You can certainly stop your Mirapex and see what happens to your RLS (but have a painkiller like Vicodin handy to treat any RLS symptoms that may occur) and more definitively see if you need to keep taking your Mirapex. There are no studies about stopping Mirapex as we already know that the negative results are a sudden worsening of RLS symptoms.

Sent: Tuesday, December 16, 2008 11:34 AM
Subject: Bummed out!

I have RLS and have been taking Mirapex for some time. It has been wonderful and very seldom do I take more than 0.025 daily.

My prescription "D" company called today and they no longer cover the medication. Ropinirole was mentioned and I am wondering what you think of this drug. Fortunately I refilled my prescription and am good for well over 180 days.

I haven't spoken to my physician and will when I see him in a month or so. I am trying to do my homework as your site has been so good for me.

Life sure can be a bummer as they say.
Sandra B.

P.S. I took Requip before taking Mirapex and had horrible side effects. They didn't mention that they cover this drug anyway.

Unfortunately, ropinirole is simply the generic name for Requip. Thus you will be somewhat stuck. However, the insurance company will usually take into consideration that you cannot tolerate ropinirole and may then authorize the use of Mirapex (since it is the only other approved drug for RLS). However, they can still demand a high co-pay for the drug.

Sent: Saturday, December 20, 2008 6:21 PM
Subject: Compatibility of Mirapex and Strattera?

I am currently taking .5 Mirapex daily for my RLS. I am also on 150 mg of Trazodone and 100 mg of Zoloft. My doctor would like to begin prescribing me Strattera for ADHD.

Will this make my RLS symptoms worse?
Rachel S.

The Strattera should not worsen RLS but the Zoloft has a tendency to do so. Wellbutrin is a better choice for RLS (if it works as well for you as Zoloft).

Sent: Wednesday, December 24, 2008 8:50 PM
Subject: Dying from RLS

I had been seeing doctors for almost a year, trying to find out why I was so deathly tired all the time, when finally in October one read through the lines and said he was more concerned about my poor sleeping/RLS than I appeared to be (!) and recommended I take one of the Parkinson's drugs. In an ideal world I would have had my stint at the sleep clinic first, but their waiting list places me at about 1.5 years from now. So I went on Ropinirole (Requip). One week at 0.25 mg, one at 0.5, then full dose 1 mg, which I've been on a little more than a month.

The Ropinirole seemed like it was working at first but I kept having nights from hell interspersed with the nights where I actually slept for hours at a time. My legs started twitching in the daytime after only a few days on the drug, and this escalated until after 3 weeks at full dose I couldn't sit in a chair for more than 20 minutes before they freaked out, even first thing in the morning. And the drug doesn't seem to be working at all anymore to help me sleep.

Throughout the month at full dose I have had bad nights; 4 times I took a second pill in the middle of the night, which had heaven-sent effect but scares me because I don't know the possible consequences. The last 3 nights were worse than I ever had before (am I exaggerating ? I'm not sure. full body contortions when I squashed my legs up under my butt to shut them up. endless ripples in my leg muscles. arms twitching. on and on and on. No sleep last night until after 5 AM. etc etc) and I don't want to double up the pills again until I talk to my doctor. But I also don't want to become a basket-case again. It has been so nice to be able to function for the last few weeks, god I don't want to lose that again!

Has my traitorous brain has become resistant to Ropinirole? If so, what should I try? (i.e. mention to my doc) (I don't see him again until 3 weeks from now)

I have heard (in lay circles) of people dying from sleep apnea as the ultimate cause though the immediate cause might be a heart attack. Have you heard of any deaths attributable to RLS? I am opening myself up to mockery here, but I could feel myself dying before the Ropinirole, I was dying faster than a person ought to, but still nasty slow, becoming stupid and incompetent and unable to function; every day worse. How could I not have been dying? How little sleep can one survive on, how much sleep is required to pass yourself off as yourself?

It sounds as if you are suffering from augmentation (worsening of RLS from taking a dopamine agonist). Right now the best thing to do would be to get off the Requip and take a reasonably potent opioid (hydrocodone, oxycodone, etc.) for the 1-2 weeks of worsening of RLS off the Requip.

You could then restart Requip at a lower dose (if the lower dose was effective), change to Mirapex (the lowest dose that works) or continue on the painkillers or add an anticonvulsant (Neurontin, Lyrica).

To the best of our knowledge (which may easily be incomplete as the research on RLS is still very limited, especially in this area), RLS does not affect lifespan and does not cause premature death.

I am a 45 year old male and I am suffering from RLS for almost twenty five years. Only for last few years I have started (after discovering that I have RLS) to use Sifrol 0.18 mg which works fine with me beside it’s scary side effect of course.

Are there is any new SAFER and LESS SIDE EFFECT medicines have been discovered to cure or to control RLS for last few years as I am really worry from the side effect of Sifrol (pramipexole).

So far, Sifrol (pramipexole) and ropinirole are the safest and best studied drugs for RLS. There are other drugs, but they have not been studied as well so it is difficult to answer this question fully. Also, some drugs may be better for certain patients than others but only trial and error can establish which ones.

Sent: Thursday, January 01, 2009 7:17 PM
Subject: Breastfeeding and RLS?

This may sound insane, but I was actually SO happy to be diagnosed with RLS a couple of days ago. I honestly thought that I was losing my marbles, like...actually. I was embarrassed keeping my husband up night after night with, what I called, "my spazzy leg thing". It's been getting worse for months, and I took Vicodin for migraines, and it would stop. I had even thought, oh my gosh, am I taking Vicodin too often and this is some bizarre withdrawal?? But, I wasn't even taking Vicodin every day, or more than a couple the days that I did take it.

I finally ended up mentioning it in another conversation at my Dr's when I was talking about how I had only had 4 hours of sleep the night before from my legs spazzing out. She told me it sounded like RLS, and I got home and researched the heck out of it and sat here crying reading all the symptoms, and EVERY single thing every site said, I knew and felt. There wasn't a single thing that I was like "wait, that doesn't sound like me".

I am breastfeeding currently though, some options are less right now, but like I said I'm just happy I'm not insane. I even thought maybe I was getting some reaction to Benadryl and Unisom that I never had because I'd take those, trying to get some sleep finally, and WORSEN the HECK out of the RLS. Night after night I have sat up crying, "spazzing" out all over the place, pacing the room, becoming a sleep contortionist just trying to be able to get a speck of sleep praying that the jerks, or one of my children, or a noise, or ANYTHING wouldn't wake me up once I finally passed out from sheer exhaustion only to endure it all over again.

I am a 26 year old mother of 4. I also described it as feeling like my insides were too big for my skin LOL...see why I thought I was losing it...indescribable, as you all well know. And things like remembering parents massaging legs as a child from "growing pains" I read somewhere, BAM right on the money. I keep looking back, now that I've been researching, and going oh my gosh THAT'S what that was! AND THAT, and that, and that.....and so on and so forth. I think that even just having an answer, will help make those nights a speck less unbearable. Especially being able to explain to my husband, and my family who appeared to be looking at me like umm....okay, with a big question mark above their heads when I tried to explain my spazzy legs lol.

Does anyone know about which medications are the best for RLS while breastfeeding? My Dr had a disagreement with me, and told me I was depressed and needed to go to a Psyche Hospital when I tried to tell her my exhaustion was really getting to me, and REFUSED to treat the RLS until I got on Psyche Meds. When I suggested to her that I think it's all exhaustion and that if I just got some good sleep my mood would be back to normal, she blocked the door and wouldn't let me leave until I told her that I would go see a Psychiatrist, and she still refused to treat my RLS. Needless to say we're in the process of switching Dr's.

Serena V.

It is still quite common for doctors to miss diagnosing and treating RLS even when presented with the facts very clearly as was your case. Hopefully, with continued education, your story should become much less common.

Treating RLS while breastfeeding is very tough as most of the medications pass through into the breast milk and may affect your child. Methadone (in very small doses) is actually the safest drug to use in this situation but you will have great difficulty finding a physician who will prescribe this drug for you.

Sent: Thursday, January 01, 2009 5:19 PM
Subject: RLS or not?

I was diagnosed with RLS after a sleep study at EVMS sleep clinic in Norfolk VA. In fact, I saw the test results on a graph and the doctor reports that while I have SA my RLS is equal to my SA and appears to be another culprit of non sleep. I'm 65, and have refused all meds based on their side effects. I did try Requip, but it wired me. Then Neurontin but I was terrified to take it because of the side effects.( I'm a licensed therapist) I was offered another drug but also refused to take it because of the side effects.

I thought long and hard about the RLS and told the Nurse Practitioner that perhaps it was the apparatus on my legs that increased my leg movements. She quickly said no the equipment reads internal movements and that is not a possibility. I have no symptoms of RLS with the exceptional occurrence of having to walk around when I'm in the movies. Nothing like what I read about on this site.

My daughters have this too but nothing else is evident to me. But these are rare occurrences. Oh, my Mom had RLS. I do recall severe leg cramps that come every few years in my calves. I will get a permanent bruise where the cramp came.

A sleep study can only diagnose PLM (Periodic Limb Movements or your leg kicks) but not RLS. Although most RLS patients (over 85%) have PLM, there are more people with PLM without RLS (PLM occur frequently with drugs such as the antidepressants like Prozac). It is quite controversial whether the PLM during sleep actually cause real problems and need to be treated.

As your RLS symptoms are quite mild (and likely need no treatment), it is likely best to avoid any PLM treatment at this time.

Sent: Saturday, January 03, 2009 11:55 AM
Subject: RLS in Children

I am from Iceland (but I live in Virginia, USA) and I have severe RLS.

I take a very low dose of Methadone for my RLS and have been doing so for a while and my RLS has not come back in over a year…So I am doing great…..

HOWEVER, my 2 young children are suffering pretty badly from RLS. Their doctor keeps telling me that “it is growing pains” but since I have RLS myself, I know what it looks like, so I am 100% certain that my 3 year old son and my 6 year old daughter both have RLS pretty severely.

What can I do for treatment for them? Right now I use hot baths and massage, but that can be hard at 2:00am in the morning on a regular basis. Do you know of any “safe” treatments for RLS in children!!

Unfortunately, there are no approved treatments for children with RLS. It has been tough enough to get drug companies to work on getting FDA approval for RLS drugs for adults (and children require a much more rigorous and thus expensive process for approval).

However, most RLS specialists do treat children (with off-label drugs) and usually choose Requip or Mirapex. So far, these drugs have appeared to be safe and effective in young children. You will need to find a specialist (RLS or possibly pediatric neurologist who specializes in movement disorders) to treat young children with RLS.