Patient letters on RLS symptoms and remedies- Page 75

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

Sent: Sunday, June 24, 2007 9:26 PM
Subject: RLS in arms?

For about 5 years now I have had problem with this RLS on and off. I might have it constantly for a week and then disappear for 3 or 4 months and then it comes back for may bee 1 night and then gone again for a few months. When it first started it was mostly my legs. Then it would happen in my legs and arms.

Now when it occurs it is just my arms that fall victim. I don't hear anyone mentioning it happening in their arms. Usually if I get back up and start really working my arms by stretching them, moving them back in forth like I am jogging and massaging them helps.

Does anyone else get this feeling in there arms as well?

Cleo S.

Medical Response

RLS occurs fairly commonly in the arms. It first occurs in the legs (as in your case) then extends into the arms. Most people with RLS in the arms still feel it in the legs. Stretching, massaging and moving the arms usually helps.

Sent: Monday, June 25, 2007 7:52 AM
Subject: Treatment for RLS?


I am 27 years old and been dealing with this since the age of 13. I didn't know what it was at first and people looked at me like I was crazy when I described it. When I finally started to hear about it, I know right away that was what I had. It went from seldom to every single night. I am presently not sleeping more than a few hours a night. It is affecting my every day.

I do not have medical insurance right now and I was wondering if there is an over the counter or herbal remedy I could take. Or maybe exercise? All I know is I've never been so irritable in my life!! I'm told that my father had this as well, and use to walk the house at night instead of sleeping. That is what I have been reduced to. Hot baths seem to help, but only while I'm in it.

Also, it use to happen just in my legs...it is not in my arms as well. Does this mean something else is the problem or is it normal to feel these sensations in your arms?

Crystal,
Arizona

Medical Response

RLS extending to the arms usually occurs when the RLS gets to a moderate or severe stage (which does seem to describe your situation fairly well).

Mild to moderate exercise may help as do baths but for RLS as severe as you are describing, medications (typically Mirapex or Requip) are generally needed to get relief.

Sent: Monday, June 25, 2007 12:45 PM
Subject: RLS needing high doses of Mirapex?

I have had RLS for many years but as I get older it seems to get worse. The RLS keeps me awake no matter how tired I am. Sometimes I am awake until 2:00 in the morning and I have to get up at 5:00. I recently injured my back and had been taking Vicodin two at bedtime at last my RLS had disappeared. But then I stopped taking the Vicodin as my back got better now the RLS is back.

I have tried several different OTC medicines, including Tylenol PM to help me sleep but that only makes RLS worse. Finally my doctor prescribed me Mirapex 3mg at bedtime. I still get RLS about 4 times a week and it is awful. I was wondering is there something out there that is similar to Vicodin that is not habit forming?

Kelli D.

Medical Response

Most OTC sleeping pills contain antihistamines which tend to worsen RLS, so as you have already found it is best to stay away from them.

Mirapex usually resolves RLS symptoms but very few patients need more than .75 mg. Your dose of 3 mg is extremely high especially as most patients start at .125 mg and then increase the dose only if necessary.

Pain pills can be used on a regular basis (at low dose) without any concern of them becoming habit forming (unless their is a known history of drug abuse). Many RLS patients take these daily for years without problems. At equally effective doses, they are all equally habit forming. Ultram also works and is not exactly an opioid, so if you have concerns, you may want to try that medication.

Sent: Tuesday, June 26, 2007 10:08 AM
Subject: Still have insomnia

After months of looking for doctors who would help me with my RLS, (I failed the DAs, anticonvulsants, benzos, etc.), I have been going to see a pain specialist who has prescribed methadone for my RLS and pain. I can honestly say that most days my RLS is under complete control.

However, my insomnia persists. Actually, that's not quite accurate - it seems that my circadian rhythm is off. If I could work at a job that would allow me to sleep from about 4am to noon, it wouldn't be a problem. But I can't. For me to get to bed by midnight, it takes several sleep meds at once, and then I can't stay awake during the daytime. I often take as many as 6 naps during the day.

I have tried Ambien CR - that was the best sleep med as far as how well I slept, and how alert I was the next day - but it made me hallucinate. Lunesta doesn't work at all for me in the prescribed range. Rozerem just doesn't work, and Sonata only works for those early morning hours. My pain doctor let me try clonazepam, but it didn't help me sleep at night, just during the day.

Right now I am taking .2mg of Ativan plus a Sleep MD to get to sleep at night. When I wake up I feel rested, but the sleepiness sets in unless I take some kind of stimulant. Caffeine gives me jitters and palpitations, but I am seeing a diet doctor who has prescribed extended release Tenuate for weight loss. Fortunately, that helps me stay awake during the day. I only need one or two naps.

Is there any hope that I will ever be on a normal schedule? Are there any medication regimens that you think could be helpful? I will starting with a new sleep clinic in a month or so, and they seem to treat insomnia aggressively. I am hopeful that I will be able to go back to work soon, and really need help with this sleep problem.

Thank you for your time.
Susan B.

Medical Response

It is not uncommon for RLS patients who have suffered from insomnia for years due to their RLS to have this problem persist despite resolution of their RLS problems with medication. After years of insomnia, it is often difficult for your body to synch back into a normal sleep schedule.

Often it may take months of a therapy to resolve this problem as it took many years to create it. Combination treatment consisting of behavioral therapy and medication usually works but only after weeks or months. Daytime naps are very counterproductive (although you may find them necessary now) to establish a normal circadian rhythm for sleep. You may ask your doctor about prescribing Provigil to help keep you alert and awake during the daytime. The sleep clinic that you will see should be able to guide you through this problem.

Sent: Tuesday, June 26, 2007 2:54 PM
Subject: Pregnant with RLS?

I have RLS for years. Last year I finally found a med that worked, Requip (1mg)! Now that I am pregnant, I have to discontinue the life saving medicine and of course my RLS is back and awful. I can’t do this for 9 months, any suggestions for treatment during pregnancy?

Anne

Medical Response

Pregnancy is a tough time for RLS as most medications are not acceptable due to their risk to the developing fetus and RLS symptoms typically worsen during the third trimester.

Although this may sound like a very strange suggestion, the best drug for RLS during pregnancy is methadone (a second choice would be oxycodone). It works extremely well and at low dose has very little risk. Also, there is a lot of experience with this drug in pregnant heroin addicts (at much, much higher doses) with fairly good results.

Sent: Tuesday, June 26, 2007 12:45 PM
Subject: Severe Restless Legs

Thanks for all the info on your website. I am 75 years old & have had this malady for 30 some years when it used to be suggested to see a psychiatrist. My family doctor in Fl. gave me the generic of Triavil for depression when my husband passed away & realized it took away my RLS & I asked if I could continue it & he said it would not hurt me. That was in 1994 & I moved 11/2 years ago & my family doctor wanted me to try Requip . I began it last year.

My RLS has gotten much worse, now it's also beginning earlier & I can't go out in the evening at all unless it's walking. & some nights I'm up pacing the floor crying all night. I've had every kind of test imaginable, today included a vein specialist.

My veins are great, my arteries are great, but oh how miserable I am. I am going to see about trying the original meds again. I am so tired. My sleep has been so messed up that I have been on Ambien & now on Ambien CR. But I feel tired all the time. I have been so active all my life, volunteering & traveling & this is awful.

Is there any help for me?
Betty

Medical Response

You are most likely experiencing augmentation from the Requip. This problem is a worsening of RLS due to taking Requip. The treatment for this problem is to stop the Requip and your RLS should return to where it was before you started on Requip. Most patients need opioids (Vicodin, oxycodone) to get them through the 1-3 weeks off the Requip until symptoms return to baseline.

Triavil contains two drugs (Perphenazine and Amitriptyline) that usually worsen RLS so it is strange that it helped you. You may want to stay on a daily painkiller or switch to Neurontin.

A Response from Betty

Sent: Wednesday, June 27, 2007 3:02 PM
Subject: Re: Severe Restless Legs

Thank you so very much for the info. The pharmacist said I should see my doctor and maybe go off it gradually. I have an appt on Friday. So do you feel I would have problems w/Mirapex if I did w/Requip? What a website this is!!! you really do feel you are alone w/this thing. My son who is 53 has been diagnosed w/it also.

Betty in Missouri

Medical Response

We cannot be sure that Requip will cause the same problems as Mirapex, but there is a reasonable chance that it may happen.

A Response from Betty

Sent: Monday, July 02, 2007 8:08 AM
Subject: Re: Severe Restless Legs

Thanks for responding! I saw my doctor Friday. He wanted me to gradually go off Requip & gave me samples of 0.5 mg for 5 days then 0.25 for 2 days then go to Mirapex 0.125 mg for 5 days then 0.25 mg for the next 5 days to try. I dropped it on Friday night & took the 0.5 mg Requip & still took my Ambien CR & I paced the floor all night.

Needless to say I felt awful all day Saturday. I had company come in so I went back to my regular dose of Requip 1 mg & took that again last night. I slept until 3 am and tossed the rest of the night.

What is your suggestion? My doctor is great but I don't feel he is up on treatments for restless legs. Do I need to look for a neurologist near O.K. , who is familiar w/restless legs? I will contact the support group in Ks near here to see if they know of one. I just joined the Restless Legs Foundation & they sent me my first magazine, with a list.

Betty from O.K.

Medical Response

As per my first email to you; getting off Requip will require a painkiller (like Vicodin) or your symptoms will get dramatically worse and you will have nothing to treat it with. You should not start on Mirapex until you are off the Requip for about 2 weeks or so. If your doctor cannot help you with this regimen, then you should seek out a specialist (who may or may not know how to treat augmentation).

A Response from Betty

Sent: Friday, July 20, 2007 7:07 AM
Subject: Re: Severe Restless Legs

I had already gone to the neurologist before I got your email about augmentation. This neurologist didn't really know any more about treating restless legs than my family doctor. I was terribly disappointed. She told me to go back on the generic Triavil from the Requip. I did one night & it was awful& I had out of company coming in & hadn't slept all night.

I had gotten your email that afternoon & I called her & she did prescribe Hydroco/Apap 5-325 mg. I have been on them 2 weeks next Wednesday. I have a follow up visit w/my family doctor. He had wanted me to go on Mirapex, but she said since the other had done so well w/me for so many years go back to it & try it. I may be back where I was last year.

What is your thinking? I know you recommend Mirapex more often than anything. This hydroco/apap got it under control & I dread the switching but I sure don't want to stay on this drug for long. This neurologist said then if this drug didn't work we might need to do a sleep study. If she isn't any more familiar w/restless legs than what I perceive how would a sleep study help her to help me????

Betty in KC

Medical Response

There is nothing intrinsically wrong with taking a narcotic (hydrocodone or generic Vicodin) for your RLS (except that it contains 325 mg of acetaminophen that does not help RLS so is not necessary). However, we usually like to treat with other medications before resorting to the narcotics.

A change to Mirapex may be better (I like it as well as Requip as they are both the drugs of choice for treating RLS), but the only real way to determine that for you is to actually try it. The chances of getting augmentation (from restarting Requip or from going on Mirapex) as still quite significant, so you must be careful (keeping the dose lower may be beneficial). You may also consider tying an anticonvulsant such as Neurontin or Lyrica which work very well for many RLS sufferers.

A sleep study would most likely be of no benefit in your case. You simply need proper management of your RLS by someone who understands the disease and knows the drug treatment very well.

Sent: Friday, June 29, 2007 9:14 PM
Subject: Sleep study for RLS?

I have had RLS for several years now and usually take Mirapex .25mg between 6-8 a night. I had a sleep study done a few months ago and I wanted to know if it was beneficial for me to have to take my Mirapex or should I have gone without it?

Elizabeth W.

Medical Response

It depends upon what they are looking for on the sleep study. Generally, the sleep study is done to rule out sleep apnea and Mirapex does not affect that problem. Mirapex may lower the amount of PLM (leg kicks) but that should not make that big a difference.

Sent: Sunday, July 01, 2007 5:16 AM
Subject: RLS

My physician and I are working together on my dosage of Requip and what is best for me. He just ordered me a one month supply of 0.5 mg with the idea that I can take 1 or 2 a day as needed. I will see him in a month.

We had a lengthy conversation re meds and I need to tell you that he was surprised that Celexa worsens RLS. Thanks to you and your site I found this out and we plan to discuss taking an anti-depressant at the next visit. Who knows!!! I have been off of my blood pressure medication for awhile and doing very well.

I am retired three years and perhaps my position caused my high blood pressure and maybe the depression, too. Time will tell. Nothing else has changed in my life. If all goes well I will be just on Requip and that isn't bad for age 73. God is good! As you mentioned earlier, perhaps I can get off of that also.

When going from 1mg (after completing Starter Kit) to .5 and being off of Celexa for a little more than a week (.20mg), can I have all sorts of emotions going on? One is definitely anxiety which I do have on occasion and take alprazolam .25mg (30 pills can last me many months) as needed. Also experienced phases of dizziness which has passed. Could this be withdrawal symptoms? It was a very weird feeling/feelings and not pleasant. I really felt quite messed up mentally and emotionally. I even lost control with my poor husband (50 years this July 6th) not knowing why and he certainly did not deserve it.

I appreciate your site and the good work that you do. It has been so helpful with your suggestions and helps me to take some control over my life which I know I should do.

My physician does not have any negative feelings regarding my researching RLS and presenting my findings to him. He is a great listener and I am grateful for this. I surely am blessed! Have a great day!
Sincerely,

Sandra B.

Medical Response

One can't be sure but it does sound as if stopping the Celexa is more responsible for your symptoms rather than increasing the Requip from .5 mg to 1 mg (although we cannot be sure unless you did one thing at a time). Wellbutrin is a much better choice for RLS patients but you need to see if this takes care of your depression (or perhaps the depression may go away with retirement).

A Response from Sandra B.

Sent: Monday, July 02, 2007 2:38 AM
Subject: Re: RLS

Thank you so much for all of your responses to my letters. You have really put me on the right track and that I am grateful for. I am
leaving today for a big road trip to NH from NJ for our 50th wedding anniversary. I feel confident that I will be able to sit still now. I
finally am able to sleep at night and that feels wonderful.

Sandra B.

Another Response from Sandra B.

Sent: Thursday, July 26, 2007 5:41 AM
Subject: Re: RLS

I am totally confused and I need your input!

I am on 1mg of Requip and am having good results from it. I spoke to my physician as you advised and I stopped taking Celexa 20 mg a little more than a month ago. I saw my physician (and he is aware of our e-mails going back and forth and is fine with it) two days ago as a follow-up visit.

We spoke at great length about how I am feeling and I am at a point wondering if I should be on a low dosage of an anti-depressant. Can Requip make one feel slightly depressed???? My physician gave me a prescription for Prozac 10 mg and I just read up on it and, again, it is an SSRI drug. Isn't that a no-no with RLS?

By the way, since I stopped taking Celexa, my RLS only effects me in the evenings now. Not early in the daytime. My physician also told me that he has no problem with me seeing a psychiatrist to prescribe. He agrees with me that I am borderline with my feelings so it looks like I will be the judge at this point of taking something or not.

Sandra B.

P.S. Requip made my 1300 mile trip to NH a complete success. Thank you!

Medical Response

Requip is not known to cause depression (in fact, some psychiatrists think that it may have some antidepressant effects), but anything is possible.

Prozac is an SSRI and should similarly affect your RLS as did the Celexa. If you need an antidepressant, Wellbutrin would be a great choice as it does not affect RLS.

Another Response from Sandra B.

Sent: Monday, July 30, 2007 4:15 AM
Subject: Re: RLS

I would like to add that I had a couple of experiences lately with nausea. Also, I am finding out as well that my desire for food is at an
extreme low. Nothing appeals to me. Is this due to taking Requip? I know the nausea is and that is taking it directly after eating.

Sandra B.

Medical Response

Requip is associated with nausea. Typically, the nausea can be decreased by taking the Requip with food.

Sent: Sunday, July 01, 2007 7:52 AM
Subject: RLS causing prickly sensations?

I have had restless leg movements for about 6-7 years. Requip has helped until recently; now I have, also, prickly sensations all over. I am 60 yrs old and otherwise in good health.

PAA

Medical Response

It is difficult to advise you on this issue as the prickly sensations may be caused by RLS or something else (this is actually the most likely explanation). Also, if the Requip or RLS was the cause of these prickly sensations, they most likely would have occurred earlier . You should discuss this problem with your doctor.

Sent: Monday, July 02, 2007 9:08 AM
Subject: Mirapex-related hallucinations

I read some older messages on this helpful site after being concerned about side effects while using Mirapex. I had several frightening hallucinatory episodes while taking this drug -- always the same thing: a large spider dropping from the ceiling nearby. I had no history of such incidents in the past.

After stopping the drug, I have experienced no episodes whatever. I am convinced that the drug was responsible. However, severe rls symptoms have resumed without relief.

Sandra S.
Oklahoma City

Medical Response

Mirapex has been associated with hallucinations but most often only at the higher doses used for Parkinson's disease. A few cases have been reported with the lower doses used by RLS patients but these are very uncommon. You must be one of the unfortunate ones that are susceptible to this side effect.

You may want to consider changing to Requip (which also has a small risk of hallucinations) or change to another class of drugs such as the painkillers or gabapentin.

Sent: Tuesday, July 03, 2007 7:25 PM
Subject: RLS and dialysis?

I am a 24 year old dialysis patient and my nephrologist recently put me on levodopa or whatever its called. i have yet to take it because I know it is a Parkinson's disease drug. I feel more comfortable taking an opioid, because I have experimented with them and they work so well for my RLS. He does not want to prescribe me this for fear I might get addicted, but I am on so many other meds, a Parkinson's disease medication is the last thing I want to add, what can I do?

Diana

Medical Response

The Parkinson's disease drugs, Requip and Mirapex (less so this one as it gets cleared by the kidneys) are actually the drugs of choice for RLS in renal dialysis patients. If you used appropriately, they are safe and extremely effective for RLS in kidney failure. Sinemet (levodopa) should not be used on a daily basis for RLS patients with or without kidney problems due to problems with augmentation (worsening of RLS).

If Requip or Mirapex do not help or cause problems then opioids or gabapentin may be considered. The opioids must be used carefully in dialysis patients as these drugs are cleared by the kidneys and thus problems may occur more readily.

Sent: Friday, July 06, 2007 5:35 PM
Subject: Requip drug holiday?

I am a 50 years old male who has had RLS for 15 years and been on Requip for 3 months. Requip 1.0 mg tablets are proving to be very successful thus far. At some point, I am thinking of a drug holiday to hopefully keep tolerance issues away. What do you recommend for holiday, in regard to the intervals and length of a drug holiday(s).

SRN,
Indianapolis

Medical Response

There is no evidence that drug holidays for dopamine agonists (Requip and Mirapex) have any benefit to prevent tolerance and is therefore not recommended. Furthermore, tolerance is a relatively uncommon problem with this class of drugs. If tolerance does occur, then taking a 2 week drug holiday may be helpful to restore sensitivity to the drug or a switch to another dopamine agonist may be helpful.

Sent: Friday, July 06, 2007 7:06 PM
Subject: Magnesium or folic acid for RLS?

Could you tell me how much magnesium and how much folic acid (in milligrams) would be useful to try to help RLS?

Karen U.

Medical Response

None of those are recommended for RLS. There is no credible evidence that taking these two substances has any benefit for RLS.

Sent: Saturday, July 07, 2007 5:14 PM
Subject: RLS and oxycodone

I was taking 1 mg of Mirapex twice a day and this was not helping my RLS. In fact , I have to found anything that does help. I tried Requip once and walked for 4 days and nights. Recently, my doctor put me on oxycodone for pain in my hip and I am due for a replacement in August but I noticed that my RLS has been better since taking this medication.

Do you ever prescribe this for your patients? I am 80 years old and I need some relief from RLS. I can not even ride in a car for very long and I sure can't sit or lie still very long. I have had this for years but it seems to be getting worse.

Betty H.

Medical Response

We often do use opioids for RLS patients who do not get adequate relief from Mirapex and Requip. Oxycodone is a common one used and should be relatively safe if used in small doses (5- 10 mg per day). Gabapentin is another option.

A Response from Betty H.

Sent: Tuesday, July 10, 2007 4:26 PM
Subject: RLS and oxycodone

I have been on 1mg of Mirapex twice a day and 300 mg of Neurontin 3 times a day. for a long time now and it is not helping me. I am bothered during the day and evening time. I am also taking oxycodone every 4 hrs as needed for hip pain. I usually only take one a day but I am wondering if I take more if it might help my RLS. I am due for hip surgery on Aug. 6 and I am a little worried about my RLS.

I have also been thinking about trying Requip again but at a much higher dosage. Do you think maybe 1mg three times a day might work. I am really miserable and having trouble sitting down for more than a few minutes..

Betty H.

Medical Response

Your case is difficult as you are already on high doses of Mirapex. Perhaps increasing your Neurontin may be helpful (if it does not cause drowsiness). I would not increase your Mirapex much higher as you will likely not get much more benefit but side effects may become more probable.

Oxycodone is a strong painkiller and you are already taking high doses which should take care of your RLS so it is difficult to recommend what you should now do (over the internet).

A Response from Betty H.

Sent: Sunday, July 22, 2007 3:35 AM
Subject: Changing Mirapex to Requip?

My Doctor tried me on Requip again and started me out on 1mg 3 times a day, Formerly I was on 1mg of Mirapex twice a day and this was not taking care of the RLS. When I went on Requip 1 mg 3 times a day did not help so he upped the dosage to 2 mg 3 times a day and sometimes 1 mg during the night if I wake up.

This seem to be working as I have not had RLS for days now. Do you think that I am taking too much Requip and should try to cut back? I also take oxycodone once a day for hip and leg pain. I am having my hip surgery on Aug 6.

Betty H.

Medical Response

Mirapex 1 mg twice daily equals about 4-8 mg of Requip per day. Therefore, you are about in the correct range (although this can differ a a lot from patient to patient and also exceeds the recommended maximum dose of 4 mg for RLS). Taking higher doses of Requip can work for many but you should watch out for side effects, especially augmentation that can occur months down the road.

Sent: Sunday, July 08, 2007 8:27 AM
Subject: Please help

I have had RLS since I was a very small child (3-5) but never knew what it was. I called them "night crawls" until I finally heard the term Restless Legs Syndrome on television. That was 10 years ago. I still had no treatment for RLS until a kind doctor suggested Zanaflex for muscle relaxation. My first dose gave me immediate relief. I have been taking 4 mg of Zanaflex for 6 years. I also have Peripheral Neuropathy (my doctor doesn't know the cause).

I recently began having tremendous breakthrough RLS, lasting days on end, all night and during the days, with my arms affected as well. My doctor has tried me on Requip (horrible side effects - I can't breathe and my heart races at night) and Mirapex which causes the same heart racing insomnia but slightly controls the RLS. I still can't sleep. I am at my wits end. I cannot live like this.

My husband tries to stay awake with me during the most awful episodes, and I am like a crazy woman seeking any form of relief - but there isn't any. I am beginning to feel hopeless and scared that I will some night just end it all. It is torture and I don't know what to do.

I also take .5 mg of Klonopin for the skin/nerve pain for neuropathy, but in the morning, not at night. My doctor is afraid I'll get addicted, so I have not increased it. I am desperate to find something that can help me. I am very sensitive to medications, and that is why I think Mirapex and Requip cause me problems.

I am wondering if I increased the dosage of Zanaflex if that would work? It helped so much, and I didn't have any bad side affects from it. Can you offer any suggestions? I don't have side affects from pain medications or Klonopin, but I do have side affects from the neurological medications ( I've even tried Neurontin but could not tolerate it ).

Heidi U.

Medical Response

Zanaflex typically does not help RLS. Why it does in your case is hard to explain and therefore I cannot make any recommendations about increasing the dose other than advising you that daytime sedation (especially when using Klonopin together with this drug) may become a big problem.

You may want to consider painkillers (opioids or tramadol) which usually relieve RLS symptoms very effectively and generally have few side effects.

Sent: Sunday, July 08, 2007 7:18 PM
Subject: RLS and augmentation from Mirapex?

I have followed your advice re restless legs and it had worked really well for 3 months, but now I think augmentation has occurred, I have been taking 0.375 mg of Mirapex at night but is not holding through the night and I have begun to have RLS during the day, sometimes it is so painful I can hardly stand it.

I am so disappointed as I was doing so well for a while. Do you have any other suggestions?

Mary,
Canada

Medical Response

You should go off the Mirapex and have your doctor prescribe a painkiller (an opioid or tramadol) which should then effectively take care of your RLS and augmentation problems.

Sent: Sunday, July 08, 2007 7:37 PM
Subject: RLS: Mirapex Fatigue

I’ve been diagnosed with RLS since 2006 but have experienced its symptoms for much longer. I have taken Sinemet, Requip, and now, Mirapex, 1.5 mg daily. While the Mirapex works to control my RLS, I am incredibly fatigued when I wake up in the morning. It takes me 1-2 hours to fully wake up. I sleep with a CPAP so my sleep quality is very good (as far as I know).

What might I take that will lessen my fatigue? Could I take a lower dosage of Mirapex with something like gabapentin or amitriptyline?

Kristi

Medical Response

Fatigue is a problem with Mirapex and it is dose related. Your dose is very high for an RLS patients as most do very well with a daily dose under .75 mg. It would be better to reduce your dose to under 1 mg and add a painkiller (opioid or tramadol) to control your RLS.

Gabapentin tends to cause sedation which you obviously want to avoid and amitriptyline tends to worsen RLS.

A Response from Kristi

Sent: Tuesday, July 10, 2007 10:08 PM
Subject: Re: Mirapex Fatigue

Is it difficult to get my doctor to prescribe an opioid or tramadol? She doesn't seem especially knowledgeable of RLS treatment options and might not know this is a treatment regimen.

Any thoughts on how I might approach this?

Kristi

Medical Response

Every doctor is different so it is impossible to predict how amenable your doctor will be to prescribing opioids or tramadol for RLS. You may help your cause by bringing in this info (which may or may not help) or better yet, bringing in a copy of my book on RLS, Coping with your sleepless nights  which covers this aspect of treating RLS.

Sent: Monday, July 09, 2007 10:51 AM
Subject: Remeron and RLS?

I take Remeron for Anxiety, plus, it helps me concentrate better at work ( I have ADHD). I know that this drug can cause my RLS to worsen- it does, and makes it hard to keep taking the Remeron, which I do benefit from. I take a low dose of Ambien (chronic insomnia), should I look into Re-Equip or Mirapex?

I can't take narcotics, as I had a real bad dependency problem, and am in a pretty successful recovery for the last 6 years.

Peter G.
47 year old male.

Medical Response

You may want to consider changing the Remeron to Wellbutrin which may work as well and does not worsen RLS. This may avoid the need for more drugs. If that does not work, then you could add Mirapex or Requip.

Sent: Tuesday, July 10, 2007 1:53 PM
Subject: RLS and Oxycodone?

I too have the same circumstance as some of the people above. I have RLS and have for quite some time. I have been prescribed everything under the sun for this and also the PTSD that I have suffered from for most of my life. Last year I had an elective surgery procedure wherein the doctor prescribed my oxycodone. I took it during the day, and not before bedtime, but found that with the oxycodone, even if I take it only during the day, I am able to sleep normally!

After my pain from the surgery went away, I still had about 15 oxycodone tablets left, so I stashed them away for future pain problems. After months of not getting good sleep, despite being prescribed multiple different medications (i.e. sonata, Ambien, a range of benzodiazepines like temazepam and Klonopin) and trying the over-the-counters like Tylenol PM and Sominex, I resorted to trying the oxycodone again.

And, again, taking one during the day relieved by RLS and sleep problems and I can get real, refreshing sleep with it. I stopped taking the benzodiazepines prior to the oxycodone, because I know you are not supposed to mix those, and I take regular breaks from it, like only taking it during the week. I only need 5 mg, and have not noticed a tolerance building up like I did with the benzodiazepines-- particularly the temazepam and Klonopin. With the temazepam, I got up to 60-75 mg/ night, which is a potentially lethal dose for anyone who hasn't built up a tolerance, and I began to notice real memory-loss problems.

With the Klonopin, I went from 1 mg in the first week, to 2 mg the second, to 2.5 then 3 in the third for it to even make me slightly capable of sleeping-- but then I have the zombie effect the following day- I don't think that is a good path to be going down, with my tolerance to that increasing so quickly and the zombie effect worsening as the dose increases. Also, when I take the benzodiazepines for sleep, and then find myself having to reduce my dose or stop them just for one night, I have terrible withdraws that persist for about a week or until I take a large dose again. I have not experienced the same thing with the oxycodone.

It seems that not only does the oxycodone allow me to sleep well, but it also relieves almost all of my anxiety and allows me to function during the day at what I would consider a "normal" level. Without an effective sleep aid I get terrible or no sleep, and am so drained of energy I can't complete the most menial every-day tasks like showering and preparing meals.

I don't want to end up like Anna Nicole Smith, taking a cocktail of prescriptions and building up a tolerance and eventually dying in my sleep, and I feel like that's what my doctors are currently giving me-- some crazy cocktail of meds to alleviate this and that symptom separately. They also cost a small fortune every month. But this one medication works for me for everything. It seems much safer to be taking one or two prescriptions per month than 5 or 6 that aren't even working efficiently.

Why does the oxycodone work so well for some people, like me? And why are doctors so reluctant to prescribe it (responsibly, i.e. with days off) when they are so quick to prescribe me all this other junk that doesn't work on me and has terrible side effects AND seems just as if not more addictive as oxycodone can potentially be? Are there special doctors I should be seeing for this rather than just my general doctor or psychologist?

Sincerely Seeking Sleep in the Southwest

Medical Response

Opioids (oxycodone) are very effective for treating RLS, even at low doses. However, they have not been studied much for use in RLS and most doctors do not know much about RLS and almost nothing about opioids and RLS. Oxycodone is often abused which is why doctors are very leery about prescribing it, especially for a condition that is not well known to them.

However, the drugs of choice for RLS (that have been thoroughly studied and found to be safe and effective for RLS and are approved) are the dopamine agonists, Requip and Mirapex. These should help you and opioids should only be prescribed if these are unsuccessful.

Most family doctors should know these drugs and be able to use them. If not, go to a neurologist or sleep specialist who should be more familiar with them.

Sent: Tuesday, July 10, 2007 7:08 PM
Subject: I'm RELIEVED to find your site, but wish it had been sooner

I've had RLS since late 2006. My doctor believes it came from untreated sleep apnea which I still have (I've confirmed apnea can cause RLS when untreated).

Recently my Requip stopped working as well at the 1.5mg. daily dose I was taking and I mistakenly recalled that my prior doctor said Requip couldn't be used at higher amounts so I stopped the Requip thinking it was a pointless waste of time. Then I started taking Benadryl allergy medicine on 7-1-07, which I charted my doses so I wouldn't forget when I had taken them.

Sure enough like you reported on this site, the Benadryl made the RLS much, much, worse (it was so bad, I only slept 2 hours per 24 hour period of time!)--it was so bad I went to the E.R. seeking medication. By then, I had stopped the Benadryl and the worsened RLS has went back to how it was before when the 1.5mg. Requip wasn't working as well--so, you were right about antihistamines.

Then today, I just finished researching what the E.R. doctor said about being able to take Requip higher than 1.5mg. per day--he was very right and so are you! I'm so glad I was mistaken about the low dose I was on. Now I've restarted the Requip as my E.R. doctor said to and I'm thankful I can look forward to higher dosing than 1.5mg to rid this awful monster I've had for a while.

From, Debbie in Colorado (one smiling person finally).

Medical Response

Requip can be taken at up to 4 mg per day. However, as you increase the dose over 2 mg, there is less of an improvement. If you need additional help for your RLS (as you get over Requip 2 mg per day), consider adding painkillers or gabapentin.

However, sleep apnea is associated with PLM (Periodic Limb Movements) but not with RLS.

Sent: Monday, July 09, 2007 8:24 AM
Subject: Mirapex side effects?

After having had Klonopin cause me to lose 3 years of my life to Depression, followed by Neurontin which caused me to be "stupid" (major cognitive difficulties), I've been taking Mirapex very successfully other than some occasional daytime sleepiness at my desk. However, for the past few months, I have been experiencing hypertension, shortness of breath on very little exertion, and my resting pulse is between 100 to 115. Nuclear stress test, echocardiogram (sp?), and thyroid test have all been normal.

Could Mirapex cause these symptoms? I take .15 mg in the evening and believe it was about the time I increased to that level that I began noticing these symptoms. I am, however, dealing with a lot of stress right now so I haven't ruled that out, but did begin to wonder about Mirapex.

Marla F.

Medical Response

It is doubtful that Mirapex is the cause of the side effects that you have been describing (although anything is possible).

I suspect that your dose of Mirapex is .125 mg as it does not come in a .15 mg (it does come also in a 1.5 mg).

Sent: Thursday, July 12, 2007 7:32 PM
Subject: I'd love to sleep all night long!!

Hi there, I have had rls for more than 30 years. About 5 years ago as things worsened I started seeking help from my primary doctor but it took some time before he took me seriously. Then a new young doctor came to the practice and he is great.

I can have symptoms pretty much 24/7. I try not to take any medication in the morning and save it for later, otherwise I have to stand at my desk to ease symptoms in the afternoon. I take Requip 2 x 1mg tablet per day. First tablet I start nibbling at lunchtime, taking about a third of it, then another 1/3 around 5pm, the last 1/3 at around 8 pm. The second full 1 mg tablet I take at around 10/10.30 pm.

This method pretty much helps me get thru the day and I usually get to sleep. However I wake up a lot during the night, say after a couple of hours. Often have to get up for a couple of times for about one hour each time, even if I have taken a diazepam 2mg at 10.pm. I only take the diazepam about twice a week. Doc won't prescribe stronger diazepam. But I haven't told him yet just how bad my sleeping pattern is. I am a female 58 years old and work full time as a legal secretary and really need my sleep.

I also take simvastatin 20mg. plus supplements for the RLS i.e. magnesium, folic acid, calcium, Vitamin B, also Gingko Biloba. My ferritin level in 59, I have been tested for diabetes and thyroid, and these tests have been ok. Doc has in the past suggested changing to Levodopa though online support group say I should avoid this because of augmentation.

Betty R.,
N. Ireland

Medical Response

You are correct to avoid levodopa (Sinemet) as it causes augmentation in over 85% of those who use it. You have several options.

You can increase your bedtime dose of Requip to 1.5-2 mg and see if that helps. If not, then you probably would do better with a non-benzodiazepine sleeping pill (zolpidem, zopiclone, etc.) that can be taken on a regular basis safely.

There is no proof that any supplements help RLS except for iron if ferritin levels are below 50.

A Response from Betty R.

Sent: Saturday, July 14, 2007 11:37 AM
Subject: Re: I'd love to sleep all night long!!

I would prefer not to increase my total daily dose of Requip which is 2mg, I am rather afraid of it as I hear it is difficult to wean off it, if and when the time comes.

So instead of taking 1mg at bedtime and 1mg spread thru the day as I do at present - I shall try and manage with 0.25mg at lunchtime, 0.25mg at around 6pm, and then 1.5mg at say 9pm to allow it to get into my system prior to trying to go to sleep. Therefore I am taking 1.5 rather than just 1mg to get me thru the night.

Betty R.

Medical Response

Your plan is quite reasonable. However, you do not have to worry that taking higher doses makes it harder to get off the medication. Dopamine agonists are not like opioids in this matter.

Sent: Tuesday, July 17, 2007 9:50 AM
Subject: Reglan and Mirapex together?

I would like to know if Reglan will interfere with Mirapex while taking both of them together?

Brenda L.

Medical Response

Reglan (metoclopramide) does not directly interfere with Mirapex. However, it is a dopamine antagonist which blocks dopamine receptors (that Mirapex and other dopamine agonists act on) and may worsen RLS. Therefore, you may need more Mirapex if taking Reglan.

Sent: Wednesday, July 18, 2007 10:43 AM
Subject: Testosterone and RLS

I searched your site but only saw a few comments by you regarding any link in males between Testosterone and RLS. Could there be any relation? Women are affected sometimes when they are pregnant so could there be times when a male's RLS is made worse by too little (or too much?) Testosterone and could benefit by replacement treatment?

Craig P.
Arlington, TX

Medical Response

It is very common for pregnant women to have worsening of RLS but this is thought that it may be due to decreased iron stores (however anything is possible as these are just all theories with no real proof).

Many women (but still a minority) also complain of variations in their RLS with their menstrual cycle and after menopause. However, this also is not well understood. There is even less clinical information about testosterone and RLS, so no recommendations can be made.

Sent: Thursday, July 19, 2007 3:39 AM
Subject: I NEED HELP!

I have all over body pain that gets almost unbearable. I also have RLS and have to take Halcion to sleep. I take Requip for RLS, but for the past several days and nights I get the RLS all over my body. I finally got the doctor to give me hydrocodone 5-500. It helps the pain some but it is still there.  I was also taking Ultram 50 mg. 1-4x day, but they didn't give that to me this time.

I am only suppose to use the hydrocodone 1-2x day. and its not to great either. I have so many symptoms that I think the doctor thinks I am crazy. But the pain is real. I am 48 yr. old female and I had to stop working about 2 weeks ago because the days I have these symptoms are getting more frequent. I have 3-4 days that I simply can't do my everyday housework. I am so tired of hurting or being so tired I don't feel like doing anything.

Can you tell me how to get my doctor to listen to me and believe me? I also take an antidepressant and blood pressure medications. I just feel like the doctor thinks I am overweight and lazy. But the pain and the RLS brings me to tears much of the time. It is getting worse not better.

Medical Response

If you have RLS, the first treatment of choice would be a dopamine agonist, Requip or Mirapex. If you have not already tried one of these medications, check with your doctor (or find another doctor who know RLS and these commonly used medications). If that does not help, then Neurontin or Lyrica are very good choices.

Sent: Thursday, July 19, 2007 11:10 AM
Subject: Nutritional Help for RLS

Just wanted to share what has helped me eliminate my RLS symptoms. I began having RLS in my early 30s. I am now 40 and have been taking a nutritional supplement called Reliv for the past 2 years and my RLS is gone. Let me disclaimer by saying that I do not sell this product so I have nothing to gain by sharing this information with you.

My friend introduced me to the products for help with PMS and one of the interesting side effects was that my RLS disappeared! (And the PMS has greatly diminished but not entirely.) Reliv is a powder nutritional supplement that you mix into a shake for morning and late afternoon.

If anyone is interested in more information about Reliv, feel free to contact my friend, Lori Dunford at dunford@verizon.net. Lori is a wonderful person who would happily help you.


Adrianne C.
Mother of four with a family history of RLS

Medical Response

We have to be very careful when recommending products like Reliv for RLS (or any other medical condition) as they have not conducted any medical studies but rather rely on testimonials, such as yours. Their website lists many such testimonials but no valid scientific/medical studies demonstrating the effectiveness of this product.

Typically, in RLS studies, about 40-50% of patients respond very well to placebo (sugar pills), often for months. This easily accounts for the many success stories recounted by Reliv and other untested products. You might ask what is wrong with taking this product if it relieves RLS (whether through a placebo effect or otherwise)? Well, very simply, a placebo pill is much cheaper and we do not know the long term adverse effects of Reliv as it has not been tested (the FDA does not require food supplements to be tested in any rigorous manner).

Sent: Thursday, July 19, 2007 4:24 PM
Subject: RLS problem

Can you help? I am a 45 year veteran of RLS--I started a support group in Alabama approximately 10-12 yrs ago. I have helped others, but now I need help.

The RLS is primarily in my left hip socket- -so deep. Some years ago it moved to the deepest part of the left hip socket.

Drugs I have used - Sinemet - worked 2-3 hrs if I did not eat.

With Virginia Wilson's guidance, I switched to Mirapex when it became available. It worked (.25-.50mg three times per day) for several years. Within the last year, I was given, in addition to the Mirapex, a drug named Lyrica, (150 mg morning and night). It seemed like a dream come true for approximately 6 months, then, was not effective.

Presently I am taking Hydrocodone 7.5/650 every 6 hours. Also, clonazepam 1mg, three times a day, and Mirapex .25 or .50 three times daily as needed. Other drugs I have tried are Requip 1 mg at bedtime. (It was like a glass of water.) Tramadol 50 mg as needed, Niaspan 500mg one per day The other one is gabapentin 100 mg 2 each 3 times a day. None of these helped.

However, approximately two months ago, I started Dilantin three times a day. I began bodily jerks, spasms, jerks/spasms radiating from the left hip socket to the extent that it would jerk my leg off the floor, my whole body, and head from side to side. I stopped it.

Within the last few weeks, I have had three ER trips. I know that I can take nubain and zofran. One trip the doctor listened to me; another visit, the doctor gave nubain and Robaxin; The Robaxin made me worse; The third trip, the doctor would not listen to me as to what was safe for me to take.

I recently had x-rays, followed by an MRI. Both injections triggered the RLS. The x-ray and MRI pertained to pain radiating from my back down the left hip socket, and down my leg.

The medication that was given after I had the x-rays was cortisone and lidocaine. I was given a shot of that in the hip. It felt good then, but that night the pain and the RLS set in. Then, I had the MRI. The injection that was given was MRI Contrast, and Gadolinium. I also had a reaction to that. I have yet to learn the results from the radiologist pertaining to the MRI.

Coretha D.

Medical Response

Your case is clearly complex and I may not be able to give you a complete answer based on this data alone (or even more data or examining your personally).

Your current treatment seems quite good as far as the Mirapex and Lyrica (I use this drug quite often myself as it dose work better than Neurontin). At the doses of hydrocodone that you are taking, I generally prefer to switch to methadone but most doctors will not prescribe methadone (although it is safer as it does not contain Tylenol like Vicodin, is less addictive and works better and longer for RLS).

The clonazepam is not a great RLS drug (or sleep drug and I rarely if ever use it). It adds little if anything for RLS, can be quite addictive and causes lots of daytime sedation. It must be tapered off slowly. I am not sure why anyone gave you Dilantin as it has no role for RLS or any of your other problems.

It sounds as if you may have a disc/nerve problem that is causing pain from your back to your hip. This pain sounds like it is separate from your RLS but may be triggering more RLS. That can be quite difficult for you to differentiate. However, RLS pain/discomfort should get better when you walk. Treating the underlying pain condition (by a neurosurgeon, orthopedist or pain specialist) may be very helpful for reducing your RLS complaints. This should be pursued (as it sounds like it is being looked into) and hopefully that will help your RLS issues also.

Sent: Thursday, July 19, 2007 8:20 PM
Subject: Is burning skin a side effect of Requip for RLS?

I was just diagnosed w/ RLS and was given a Requip starter kit where they gradually increase the dose up to 1 mg over a 2 week period. It seemed to be working well, I was having a little trouble getting to sleep on it, but once asleep I stayed sleeping, and woke more rested than without it.

Last night was day 8- my 1st night at 1mg up from .5 mg the previous 4 days. I awoke in the middle of the night to waves of hot flashes, sweating, and the skin on my arms burning so painfully that it honestly felt like they were "on fire." This continued for over an hour before I finally could get back to sleep.

The burning was so extreme that I'm actually afraid to take it again tonight, Nothing I have read has said burning skin is a side effect of Requip- is it?? If so, I'm hoping it might be an initial one that gets better the longer you're on it...??

I've read of people having burning sensations associated with RLS, but I did not have this experience previously before taking Requip. The only other medication I am on is the birth control patch Ortho Evra. I am also a smoker. Could any of these things cause an adverse reaction? Or could this possibly be an allergic reaction to the medication?

Since the lower doses seemed to be helping so far, is it effective or even common to have a lower dose (.5 mg) prescribed?

Medical Response

You do not need to increase the dose of Requip once you find an effective dose. I have many patients who do great on the lowest dose of .25 mg. Increasing the dose beyond what is effective can only result in unnecessary and avoidable side effects.

Estrogen therapy (your BCP patch) slows the metabolism of Requip and makes each dose effectively equal to a higher dose. However, at the low doses that you need, this is not a problem. You may be sensitive to higher doses of Requip as your burning sensations sound much more like a drug effect that from the RLS alone (and you did not have this problem before being on Requip).

If you still have any future trouble with Requip at the lower doses (.5 mg or less), then a change to Mirapex may be helpful.

Sent: Sunday, July 22, 2007 8:35 PM
Subject: RLS and Allergy Shots.

On March 6, I went through "Rush" immunotherapy. The following week I began weekly injections, consisting of three shots (2 in one arm 1 in the other) with ever increasing amounts of allergens. I was prescribed AlleRx PE and told to take it 1-3 hrs. before my injections. Reactions to the first 2 shots included an approximately 3" swollen, itchy, hard area at the injection site (subsiding 3-4 days later), itchy eyes, neck and head and minor asthma-like symptoms (subsiding a few hrs. later).

In addition to the aforementioned reactions, approximately 48 hours after the third injection I experienced a "tingling, restless" feeling in my calf muscles. Although uncomfortable, I experienced no lack of sleep and the feelings subsided after 3-4 days. My allergist said immunotherapy causes no delayed reactions and to "monitor" the symptoms.

Following the fourth injection, I felt the same feeling in my calves. Additionally, it seemed I was feeling the urge to urinate more frequently. The fifth injection brought the same feeling in my legs but now I was experiencing this tingling, creepy-crawly feeling in my biceps as well.

Consequently, I stopped immunotherapy. I consulted with my family doctor and was tested for anemia, thyroid problems, and lack of folate. My My blood work came back normal. It has been over 6 weeks since my last injection. I continue to experience symptoms of restless legs syndrome, although, they are worse in my biceps then in my calves. Prior and during my immunotherapy, I was not taking any medications except for my allergy medicine before my shot and an occasional Tylenol. Unable to determine the exact cause of my symptoms, last week, I began taking Requip.

I never experienced these symptoms prior to immunotherapy. I now know there is a strong link between Allergy shots and the onset of RLS symptoms.

Recap:

Eight days after starting Requip, I began to feel some relief from my symptoms (June 18). Three days later (June 21), I began a 6 day course of prednisone. During this time, I continued to take 1 mg. of Requip and my symptoms continued to improve. The day after I finished the 6 day course of prednisone (June 27), I awoke very dizzy. Consequently, I stopped taking the Requip. I took no medications for five full days and felt fine. On day six (July 3) my RLS symptoms returned. MY symptoms consist of a "restless" feeling in my biceps and calf muscles throughout the day. It is a horrible feeling. Although they do worsen at night, the symptoms are, altogether, worse then they were prior to starting Requip. Tues., July 3, I began Requip again. I currently take 1.5 mg. a day. My symptoms are improving.

I am 31 years old, 5' 3" tall and weigh 114lbs. I run 4 days a week 3-4 mi. I have never had any health problems nor taken any medications. Prior to these allergy shots, I have never experienced symptoms of RLS. I am not anemic, do not have thyroid problems or suffer from an autoimmune disease.

My symptoms concern me for 2 reasons.
1. I believe, in my case, there is a direct correlation between allergy shots and my symptoms.
2. While receiving these shots, I saw countless children receiving them also. I have had enough trouble communicating my symptoms, which makes me wonder how a child would explain this.

Sarah K.

Medical Response

There is no known correlation between allergy shots or immunotherapy of any kind and RLS (nor have I ever heard of any). However, any stress or trauma to the body may trigger RLS for reasons that are still unknown. The medication that you were given (AlleRx PE) does contain and antihistamine which can worsen RLS.

Stopping the Requip likely resulted in worsening RLS symptoms but restarting it should have resolved them at similar doses to what you took before. I am not sure why you need a somewhat higher dose (unless there is something else you are doing or taking that is worsening the RLS).

Children do have RLS (.5% of kids below the age of 13 have this problem) but the diagnosis is very tough to make as you have already noted.

Sent: Thursday, July 26, 2007 5:20 PM
Subject: RLS and SUGAR

I am a 53 year old female with RLS. About 5 years or more ago I started to have these weird feelings in my legs, and just thought it was hormonal. Then a friend of mine told me about her RLS, and the symptoms and then I knew. So anyway, I do not like medication, but needed something to help me sleep, so I started to take clonazepam, which now after taking it for many years is not so affective.

But the reason I am writing is because without a shadow of a doubt I KNOW that RLS is triggered by sugar. I have gotten clinical explanations from my chiropractor and my acupuncturist, that sugar affects your hormones and your glands, and that too much sugar, causes a chain reaction, which can affect your nerves in your legs, since the whole body is connected. The person that gets rid of my RLS is my acupuncture guy, after several treatments it is gone, and then every few months I go back for a tune up. But I see that when I eat sugar, not just one piece of cake, but if I eat each day, like before my period, sure enough it flairs up, and this happens every time I do it.

Sometime goes by and I almost forget I have RLS, then I go to a few parties, have some cake, and then boom, it happens again. I know that stretching and yoga has helped a lot too, suggested by several. My doctor wanted me on RLS med, and when I told him where I was with it, he did not have much to say, other than, I am just lucky. But a friend of mine who is a physicians assistant, believes in all I have written about, and said it all makes sense.

I do not drink, gave up caffeine and when I watch my sugar I am fine. Right now again I am not because of sugar, and getting my period. I chart things, and I know sugar is a big culprit, but I am human, and we all want a little sugar, and sometimes we overdue things. Their is a book out, I saw it on the internet, about foods and RLS, and I wanted to order it.

Darlene

Medical Response

Sugar does seem to bother a small percentage of RLS patients. However, the vast majority of RLS sufferers can eat as much sugar as they want without any worsening of their RLS. Why sugar (or carbohydrates in general) affect only a few RLS patients is not understood at all.

Additionally, acupuncture and chiropractic treatment also benefit an extremely small minority of RLS patients. Until the benefits of these treatment modalities for RLS are further studied, it is hard to recommend them for RLS patients.

A Response from Darlene

Sent: Sunday, July 29, 2007 6:43 AM
Subject: Re: RLS and SUGAR

The reason  there is a small number or patients that acupuncture work is because it is not cheap, and here in the northeast, one time going is 60 dollars, and when you first go, you go several times, till you get to the maintenance time.   Then you can go every month or every other. Everyone I know that has RLS goes a few times with a little relieve but gives up because of the cost.  Even when insurances pay you pay a lot.  

When you have RLS the muscles in your legs get tight because of the pain, and when I go to the chiropractor, mine in particularly he just works those muscles, making them not so tight, as to press on any nerves, since it is a nerve type pain.  It works every time for me, any of the above.   I can go into the acupuncture office and get my maintenance session and I won't feel RLS pain for months, and when I do, it is so minimal.  

My doctor put me on Requip that made me gain weight, feel horrible and it causes such stomach upset that I vomited.  I believe in modern medicine but this is one grey area.   If everyone who has RLS went for these services on a continual basis they would find relief.  I am such a firm believer that I have gone to my doctors with my success story and some of them are really interested and said anything that has been around 2000 years has got to be good.  

So your statistics are not accurate, I feel, because nobody can take the time or the money.  But people pay a fortune on cigarettes and prescriptions drugs and fancy cars, and clothes and fancy restaurants, but they would not think twice of spending it on themselves.   I know, I see this all the time.   I am a nurse, and I have turned many onto to acupuncture and it has all worked for them, meaning I told 14 people to go, and out of the fourteen, 11 of them continued treatment and no longer need meds at night. 

Darlene

Medical Response

It is very hard to extrapolate from your personal experiences (even on an additional 15 people that you know) compared to double blind scientific studies that use over a 1000 subjects. There is a very strong placebo (sugar pill) effect when treating conditions like RLS with most studies finding up to 50% of the subjects responding to placebo for months.

I am not saying that acupuncture or chiropractic do not work for RLS. I am saying that unless they have been studied rigorously in a scientific manner that they may not be providing anything more than a strong placebo effect that gets reinforced with repeated treatments (which may explain why those who have only a few treatments do not respond). In studies that compare medication to placebo, those on medication responded immediately to the drug while the placebo response increased over several doctor visits (just talking to the doctor for an hour while taking placebo helped 1/2 the patients over several weeks).

This issue is very complicated which is why we cannot recommend therapies like acupuncture or chiropractic for RLS until they have been properly studied and compared to placebo therapy.

Sent: Sunday, July 29, 2007 4:38 AM
Subject: RLS relief, sort of...

I am 54 years old and have suffered from RLS most of my life to the point that I rarely am able to get to sleep at night -- or stay asleep. I was on Valium for awhile when I was younger, and that seemed to make it worse. I also remember being put on something intravenously as a "relaxant" prior to a surgery that made it LOTS worse! The first time I talked to a doctor about it, they told me it was nothing, all in my head, blah-blah-blah. Trust me, it's not all in my head!

I've also been told that you only get it at night -- which is also BS. It sometimes starts in the morning and drives me nuts all day and into the night. Sometimes it affects my ability to work because I can't stay at my desk, but have to get up and walk. On the other hand, if I walk too much, it gets worse!!! It has gotten worse as I've gotten older, and particularly since I started going through "the change."

My mother also had it really bad. She was on Mirapex and it helped her a lot. A couple times she gave me one (yeah, I know that's a no-no!) and it helped. I used to use an OTC drug called Q-Vel, but it has been taken off the market. Too bad. It worked great for me! Before my dad died, he was on quinine for leg cramps because of his dialysis. After he died, I have to admit I tried a couple of the leftover pills, and, again, it helped.

But, of course, quinine (the principle ingredient in Q-Vel) is a prescription drug, and no one will prescribe it for anything but malaria. I tried drinking tonic water, but it doesn't have enough quinine in it to do the trick to let me sleep. It does, sometimes help a little, if I drink a whole two-liter bottle of it, but then I'm up all night going to the bathroom -- and still suffering from RLS!

Now I am taking Requip, and it helps, but I think I'd be better with a bigger dosage. My current doctor refuses to increase my dose (I am currently on 2 mg, and my previous doctor said it's safe up to 4 mg). I'm still suffering, and still have a lot of trouble with it. I am sometimes able to get to sleep now, and sometimes able to stay asleep once I get there. But most of the time I'm up all night with it, still. On the other hand, when I have run out and not taken it, I've been CONSIDERABLY worse off! It's the one medication I'm on that I NEVER miss a dosage.

Although lately, it seems like I need to take it earlier and earlier in the day to keep from having worse symptoms. My fear is that eventually I'll reach the point where I have no relief from it at all, and then I don't know how I'll survive! I've read that magnesium helps. Didn't help me. I've read about folate and folic acid -- that didn't do anything for me, either. Maybe I didn't find the right dosage or something. Or maybe there just isn't really anything that works. I've tried EVERYTHING I've heard about, and while I sometimes get SOME relief, it's still affecting my ability to sleep and function normally.

I'm desperate!!!
Dawn S.

Medical Response

It does sound as if you are getting augmentation from Requip (the RLS is getting worse from taking this drug and is occurring earlier in the day). It is likely best to get off the drug but you will need another drug (such as an opioid like Vicodin) for a few weeks to cover your RLS until you get back to baseline. At that point, it may be worth a trial of Mirapex. Your dose of Requip is actually quite high (although 4 mg is allowable) and increasing it to a higher dose (in your case) will most likely worsen your situation in the near future rather than help.

RLS often occurs in the daytime (if you are at rest for a long enough time) but it is usually worse at night. With severe RLS cases, it can start upon awakening and be as bad as at bedtime.

Quinine is not known to help RLS so your case is quite exceptional (although it works great for leg cramps which are not in any way related to RLS).

With correct treatment, most all RLS sufferers should be able to get relief.

Sent: Tuesday, July 31, 2007 12:15 PM
Subject: Treatment for daytime RLS?

Like all the other people who email you... I too have RLS! I also suffer from various conditions such as migraines, dermatitis, eczema, etc. I was first prescribed Requip 1mg at night, and I noticed that I was getting very bad night sweats and that I was not sleeping very well at all. It also had some effect on my dermatitis and eczema (making it worst), and also may have had a worsening effect on my migraines.

My neurologist then prescribed Clonazepam .5 mg before bed. I have read up on this drug and to my understanding it is used to subside symptoms through the night. My RLS symptoms usually occur during the day and don't subside until I wake up from a deep sleep.

My problem is, is that I need the most relief during the day and cannot take this drug during the day because of the drowsiness that occurs. is there any drug on the market that does not cause drowsiness and that is made to be taken for daytime relief of RLS?

I read on the website something about relief through stretching and taping your limbs. can you maybe explain this a little or give me a link that will explain it, because I have found that massaging my legs provides very temporary relief and am interested to try this method.

Jordan A.

Medical Response

You may want to try the other dopamine agonist, Mirapex. It may be better (as far as your particular side effects) than Requip, but only trial and error can confirm this. You can also consider the Neupro patch which lasts all day.

Clonazepam does not generally decrease RLS symptoms but rather just promotes sleep. As it has a very long half-life of 40 hours, it is also very good at promoting next day sleepiness (which is why I do not recommend this drug for RLS).

If Mirapex does not help you, then Lyrica or gabapentin (higher risk of sleepiness with gabapentin) are good choices for your daytime RLS. Opioids or tramadol are the other alternatives.

There is little information except the anecdotal ones that you have already read on stretching and other activities and RLS. It simply takes lots of trial and error until you find what works for you.

Sent: Tuesday, July 31, 2007 3:06 PM
Subject: Mirapex and headache?

I have been taking Mirapex now for about 3 months for RLS. Everything was working fine up until about 3 or 4 weeks ago. I've never ever suffered from headaches and I started getting severe headaches about 3 weeks ago. the past week has been the worst. I've had a constant headache for more than seven days.

I went to the doctor and he gave me Midrin which hasn't worked. do you think that the Mirapex could be the cause even though I didn't get headaches the first two months that I was taking it?

Carlota H.

Medical Response

It is much less likely that Mirapex is the cause of your headaches as you did fine for three months. However, at times, these side effects can appear mysteriously and quite differently than expected.

The only way to be sure is to stop the Mirapex and see if your headaches go away.

Sent: Tuesday, July 31, 2007 4:58 PM
Subject: RLS & Wheat Allergies

My doctor said I have RLS but I don't want to take any more med. than I do now. I have a lot of food allergies and one is wheat, when I do eat anything with wheat in it I have a very bad night my legs hurt so bad you set and rub them but that doesn't help, even walk around do anything that will make it stop.

I try to stay away from wheat it isn't life threatening it just makes me feel bad. But to quit hurting I just stay away from it.

Judy

Medical Response

It is always best to treat your RLS with non-drug therapies (when they work) before resorting to medications.

Sent: Tuesday, July 31, 2007 6:50 PM
Subject: Rhus tox?

I am 37 and have suffered with RLS since I was a child. During the last year or so it has become severe, I am awake all hours of the night, and sometimes I get it in my forearms as well. I read somewhere that Rhus Toxicodendron is used as a remedy, and would love your opinion on this.

My doctor prescribed potassium, l-carnitine, and mega doses of coq10, but I didn’t see results and started having daily headaches so I stopped all of it. My mother’s question (she has it too, as well as my sister) was why would someone get RLS in only one leg sometimes if it was a systemic vitamin/mineral deficiency … wouldn’t it always occur in both legs simultaneously?

Julia F.

Medical Response

We do not know if RLS is a mineral/vitamin deficiency (except for some evidence that low iron levels occur in this disease) so that part of your question can't be answered. However, we do believe that RLS is a neurological disease that originates in the brain so it certainly can be one sided (or even alternate from side to side as it does in many patients).

It is not surprising that the drugs that your doctor gave you did not help at all as none of them have ever been shown to benefit RLS.

Clearly your RLS has become more severe as it is already affecting your arms and is a major disturbance upon your sleep. If you do have low iron levels (your serum ferritin level is under 50) you may improve with iron therapy. Otherwise, you should strongly consider medication (Requip or Mirapex).

Sent: Wednesday, August 01, 2007 2:34 PM
Subject: RLS during the day and pregnancy?

I have had RLS since I was child, now in my 40’s and it has become much worse. Most nights I am unable to sleep until 3:00AM, and I often am effected during the day, which is truly maddening. Very low doses of opiates seem to help, but now I am pregnant and the RLS seems even more severe.

What can I take to help me get through this? It drives me mad when people say that “you will see improvement after your pregnancy”, or “you just have to deal with this”. This is something that dramatically effects quality of life and sanity.

Karen F.

Medical Response

You should make sure that you are getting adequate levels of prenatal vitamins and iron. Moderate exercise should also help.

Treatment of pregnant females with medication should only be done if the RLS becomes unbearable. In that case, low dose methadone or oxycodone can take care of your symptoms (they are Category B which is considered reasonably safe but should still be used with caution).

Sent: Wednesday, August 01, 2007 4:23 PM
Subject: Neupro for RLS

Neupro was approved last month for Parkinson's disease and thanks to your site I was able to download the prescribing information and took it to my doctor. He gave me a prescription for it and all I have to say it is a blessing for I have not had RLS since I have been taking it (almost three weeks), yes there a some side effects but like anything else, just deal with it.

The medication comes in three strengths 2 mg, 4 mg and 6 mg per day. As always you should start out with the low dosage and work up until it gets better. I am now putting 2 patches of 2 mg. The side effects for me it makes me sleepy but so did Sinemet and Requip when I started taking them. How I deal with it is just take a nap. My doctor told me to increase the dosage every week until I did not think I would need anymore.

I have tried Sinemet, Requip, Mirapex and Gabapentin (Neurontin) and I think I have found my answer to RLS and that is Neupro. If you want to see the prescribing information go to Google and type in Neupro.

I think that Neupro is the best thing since the wheel.

Ray,
Hurst, TX

Medical Response

There have been research trials with this drug that has shown it to be effective for RLS. I have several patients on Neupro who are now doing very well with this new drug.

Sent: Thursday, August 02, 2007 8:45 AM
Subject: RLS and pregnancy?

I was diagnosed with RLS through a sleep study during my first pregnancy, after which time, I realized that I had had it since childhood. During my first pregnancy, I was only able to sleep for 30 min-2 hrs per day. I had to go on medical leave and thought that I would go insane. Once my son was born, I took Klonopin for a short while, but stopped taking it because of daytime drowsiness.

I found acupuncture to be a huge help initially. My daytime restlessness went away within 15 minutes of my first treatment, however, I the night time symptoms reached a certain point of improvement, then stopped. I was able to stay off of medication and two years later, became pregnant again. I found that the RLS was immediately worse with my pregnancy, but not to the same extent as with my first.

I got help by putting capsicum patches on my lower back. With them, I was able to get at least 4 hours of sleep per night, continue to work and keep my sanity. About 9 months after my second child was born, however, I found that I could no longer function with so little sleep, and began to take Requip. After about six months, I began loosing my hair, so my neurologist switched me to Mirapex. The hair loss stopped and the .125 dose has been okay for me. I don't sleep great, but it is manageable.

I would like to have one more child, but am very concerned since my RLS has worsened. I tried to go without Mirapex one night, but finally gave up at 3am and took the Mirapex plus codeine to finally get some sleep. Is there anything that you are aware of that might help? I understand that it is not safe to use Mirapex, or pretty much anything else to treat RLS, during pregnancy. I hate to have this condition keep us form expanding our family.

Labrayere

Medical Response

RLS typically worsens during pregnancy (as you clearly already know). It is unfortunately common for RLS to get worse over time with each additional pregnancy (the more pregnancies, the greater the likelihood of more severe RLS).

RLS can be treated (if absolutely necessary) during pregnancy with methadone or oxycodone (which will control the symptoms extremely well) but we do prefer not to use any drugs during pregnancy.

You should have your serum ferritin checked (sensitive test for low iron levels) and if it is less than 50 (not the 10-20 as per most labs), then consider treatment with iron.

Sent: Thursday, August 02, 2007 9:48 AM
Subject: RLS in Canada

A few years ago, I came in contact with someone who put me onto your organization. She helped me to purchase your book and get some information. What a relief to have a name for this dreadful RLS, I had been suffering with for most of my life. I have only recently acquired internet and computer , and with increase symptoms decided to recheck your info. again, My symptoms were so bad that I was getting very little sleep and it had gradually worsened to the point of daytime disturbance as well. I would have symptoms from to a jaw line and in both arms. I was also experiencing PLMD, or should I say my poor husband was , as he would get kicked frequently at night if I was managing to sleep.

I let my doctor read all the info and she started me on a medication for my Raynaud's that she said could also help my RLS. WOW. what a relief, I could get a good night sleep again. The medication is ADALAT. It is a calcium channel blocker that is used in high blood pressure treatment . I do not have high blood pressure. Freedom from Raynaud's symptoms and wearing gloves year round. But also huge relief for my RLS. It does not entirely remove symptoms all the time.

For instance, I still avoid caffeine, need to keep my legs warm, maintain an active mind prior to bed time, and do some foot/leg movements and stretches when sensations come on. Usually this only occurs due to things like, cold exposure, or illness. Inactivity after surgery and other medications that need to be taken for short periods of time.
When I had an anaphylaxis attack I found it aggravated the RLS. I am sure it was to all the drugs used to get me cleared up, esp. Benadryl.

At his time I am discovering my symptoms are terrible. I believe it is connected to something to do with another major surgery and the fact that I am in chemotherapy treatments. Reading up I see the antinausea medication is likely my culprit. I am currently using Maxeran, also known as Reglan. I took it steady for a whole week. After my first treatment I was given Gravol, it was not effective enough and caused headache and severe drowsiness etc. But I did notice some RLS when I used it too. I did not take as much of it nor for as long.

After the first chemo I thought it was possibly from the antiviral medication I was given to combat the shingles as a result of the chemotherapy. Or maybe from the Chemo drugs themselves. But it only lasted a short while. When it returned this time I thought again maybe from the chemo drugs. But as I read up I see it is probably the anti-nausea medication. I will ask my oncologist if it is possible to use the domperidone recommended in your literature. Also have my iron levels checked, as iron deficiency anemia has been a condition much of my life, and with chemo my blood cell count is fluctuating.

It is difficult for doctor to give me medications as I have several different auto immune disorders, and so many drugs are not tolerable or interact. I cannot take codeine, I have been given Tramacet after surgery for pain, it produced no side affects and worked well.
I will also alert my new doctor to your web site. I am sure glad to have access to the internet now and that I have finally learned how to use it.

Sharon K.
Sparwood, B.C.
Canada

Medical Response

Adalat does not generally help RLS but you never know.

Gravol, Benadryl and Maxeran typically worsen RLS but domperidone (not available here in the USA) does not. For more severe nausea, consider Zofran or Kytril which are made to treat chemotherapy induced nausea/vomiting.

A Response from Sharon K.

Sent: Saturday, August 04, 2007 10:22 AM
Subject: Re: Adalat

In regards to the Adalat, you state it doesn't usually work. Interesting, because I have obtained excellent results from it within a few days, and have been using it now for about 3 years. Like I said it was prescribed for Raynaud's and I was told by my doctor that is could help the RLS too. My RLS symptoms were extreme and even causing me daytime discomfort from head to toe.

I found the symptoms gradually worsened over the years. It started out in lone leg below the knee, then both, then moved up my body to my neck and arms. Some times I felt like I was in one big whole body spasm. It was awful!!

I just wonder if it isn't a better first try than many of the other drugs used. It has little if any side affects, and would be worth a trial to see to see if it works before trying some of the other more toxic medications that are found to be helpful. I will stress that keeping my legs warm, especially in the late evening or colder weather is a must.

Sharon K.

Medical Response

I have many RLS patients who are already on Adalat (it is a fairly common blood pressure drug) who have not had any improvement of their RLS from taking it. Most likely, you are quite unique in your response to Adalat (it may be that your Raynaud's disease help potentiate this response to Adalat that others do not experience). Therefore it would be hard to recommend this drug for other RLS sufferers (there are side effects to Adalat even though your have not had any).

Sent: Thursday, August 02, 2007 3:35 PM
Subject: RLS Question

On June 29, 2007 I went for Laser Therapy and quit smoking. That night I had this horrible buggy sensation in my legs that lasted all night. The next day it would not quit! I called the Laser Therapy place and explained my symptoms to them and asked if this was a normal side effect of the laser. They told me it definitely was not and I should seek medical attention.

The whole day I paced and my legs and upper thighs hurt so badly from all the walking. I could not sit still for even a moment. It has gotten a little better since then, but at night I really have a hard time getting comfortable and sleeping. Have you heard of this happening to anyone else that had the Laser Therapy? I don’t know if I had RLS before this. I did have debilitating “growing pains” as a child.

Now that I’m older I experience bouts of shaking. Sometimes I feel like a severe alcoholic that has not had a drink in a day. Since I have had the laser it has become significantly worse. It’s been over a month now and my symptoms are still strong. They are so strong in fact that my doctor prescribed Requip for me. I’m hoping this helps. I’m really glad that I’m not smoking anymore, but I just want to cut my legs off!

Is it possible that the laser disrupted my nervous system? I no longer smoke, do not drink coffee, and exercise on a regular basis.

Robin N.

Medical Response

I have never heard of laser therapy causing RLS. It is possible that the stress of not smoking (any stress or anxiety may worsen or trigger RLS) may be the cause of your problem but it may be impossible to figure this out.

Requip works great for most RLS patients so you should improve.

A Response from Robin N.

Sent: Friday, August 03, 2007 5:26 AM
Subject: RE: RLS Question

See that is the weird thing. There was absolutely no stress when I quit. I actually was calmer than I have ever been in my life. The laser therapy was not only for smoking cessation, but it was also for stress and overeating therapy. I suppose I will never get an answer. I did a search online to see if there was anyone else that may have had this happen, but I could not find one single case. Maybe it is just a total coincidence.

I thank you for your response. I wish I could say that I slept last night with the Requip, but I did not. It was only my first night on it though. The doctor told me to give it a week or two and see how I feel. I am going to be optimistic.

Robin N.

Medical Response

The Requip starter pack slowly titrates the dose of Requip over 2 weeks. If you need a higher dose (than the .25 mg that the starter pack gives your for the first 2 days) to treat your RLS then it clearly will take longer before you get relief.

Sent: Sunday, August 05, 2007 9:54 AM
Subject: Please help me

Under strict doctor’s care I have taken countless drugs for RLS – I thought I had tried everything. Then was prescribed Requip, which had horrible side effects, I started buying things on E-Bay, and on television, things I did not need or want – it was as if I was addicted to some kind of weird gambling. Then, (still using Requip) the Restless began to get worse, I could not even sit down in the afternoon because my legs were jumping badly – even my arms were twitching.

The doctor took me off the Requip because of the side effects – she also said Requip can “back-up” and make RLS worse – she prescribed Ambien and 1/2 tablet of Tylenol #3 – It has been wonderful! Now, comes the problem – (which is very embarrassing) each morning I find plates of food, that I do not remember preparing I have even woken up at night choking on food while in bed that I do not remember bringing to bed, I even find furniture accessories put in different places. I am afraid to tell my doctor about the sleepwalking because she will take the Ambien away from me – if she does, my life will be miserable again. Is there another drug in the Ambien category that does not have “sleep walking” as a side effect?

Shirley F.

Medical Response

Requip has been associated with compulsive behaviors (such as compulsive gambling) but this is much more common at the higher doses used for Parkinson's disease. More commonly, Requip (and other dopamine drugs) can cause augmentation (worsening of RLS similar to what you experienced).

Ambien has been associated with nocturnal eating disorder. It is very likely that other sleeping pills may do the same thing but you can try Lunesta and Sonata (they are otherwise very safe drugs) and see if they work better for you.

Sent: Sunday, August 05, 2007 5:31 PM
Subject: Concern about Dopaminergic treatments

I am a single 33 year old male and have been suffering from RLS for about 10 years but have avoided any therapy for several reasons. Judging from the other emails sent in I would classify my condition as moderate at this point as it has severely increased in the past 9 months.

I have avoided treatment for 2 reasons – 1) I have had a number of knee injuries (hyperextensions and torn ligaments) and initially attributed the pain to lingering damage and 2) once becoming aware that my symptoms were not based on any lingering damage in my knees (multiple MRIs, X-Rays, Physical Therapy, and stumped orthopedists) and that my doctor’s initial recommended treatment course was dopamine agents, I was and still am leery of subjecting myself to dopaminergic drugs.

Are my concerns with the Dopaminergic agents rational? I am not ruling them out, but it seems to me to be extreme to begin on this. One of the underlying factors is my displeasure with my mood and social capacity when I was placed on Paxil to address anxiety. I was unhappy with my mental state and am a much happier person without. Your treatment guides seem to indicate that Benzodiazepines are the first course of treatment to attempt.

I would prefer to start with these as they seem less invasive/extreme than medications originally designed for Parkinson's. I am leaning towards Xanax as it’s original purpose was for anxiety treatments, but with a concern for tolerance and dependency am unsure what an effective holiday regimen might be. I am planning to setup an appointment with my primary care physician and discuss the situation with him and as usual want to go in as informed as possible. He has been very open to accepting my opinions and tailoring treatment to meet my goals and address my concerns.

I should also add that I suffer from migraine headaches which have not responded well to any of the preventative meds or the blood pressure altering meds (Imitrex, Maxalt, Sumatriptan, and others) so the treatment we have settled upon is Endocet (dosage of 5-325) as needed (1-2 migraines a month – with prompt medication they last 9 hours at most – if allowed to go beyond the auras they can last up to 3 days regardless of medication). Recently as the RLS got unbearable in the early days of this summer I resorted to using the Percocet to quell urges to move and get to sleep.

It worked semi-effectively but in dosages which proved effective (2-3 tablets) I would experience heightened pulse and respiration and believe that I was either a) on the cusp of overdose or b) experiencing an allergic reaction. I had previously had Vicodin prescribed for a dental problem and discontinued using that after the first dose as I experienced an allergic reaction (extreme pulse, labored breathing, sweating, nausea) – would this indicate opiate regimens to be too risky? I was advised that I had an allergy to Codeine, but the experience with the Endocet (generic Percocet if I recall correctly) concerns me.

Greg M.
Ohio

Medical Response

I would be quite concerned about using opioids as it does seem that you have quite adverse reactions to them.

Benzodiazepines are reasonable choices for RLS symptoms that occur on an intermittent basis. Taken daily, there is a significant risk of becoming dependent or tolerant to these medications. For daily use, the non-benzodiazepines are preferred.

However, for daily RLS, the dopamine agonists (Requip and Mirapex) are the drugs of choice. Most people do very well on these drugs while a minority (that tend to be more vocal and write more emails) do have trouble with this class of drugs. However, if you do have side effects or other problems with the dopamine drugs then you simply have to stop them and will then be back to where you started.

Sent: Sunday, August 05, 2007 6:01 PM
Subject: Mirapex and Requip

Can Requip and Mirapex be used together? What is the higest dosage safely allowed for each of these medicines?

Grace

Medical Response

These medications are generally not used together as they do the same thing. The maximum dose of Requip is 4 mg while the maximum dose of Mirapex is .75 mg.

Sent: Tuesday, August 07, 2007 8:33 PM
Subject: Potential new RLS medication?

I've had pretty serious restless leg for 10 years or so. I started getting it treated about 5 years ago. I've so far tried Neurontin and Mirapex as medications. The Neurontin became ineffective and caused dizziness. The Mirapex has been pretty effective but the side effects are undesirable. Nausea and more recently compulsive shopping and compulsive gambling have been among the side effects. I never had an interest in gambling before taking Mirapex.

Due to the problem with the gambling and the hangover side effects of Mirapex I've been looking for an alternative. I had taken Cogentin at one time when over prescribed a psychiatric medication during a time of stress. The Cogentin counteracted the feeling of akathisia created by the medication. I've always thought since then that since the akathisia symptoms felt exactly the same as restless leg that Cogentin could possibly be an effective treatment of RLS.

I wasn't able to get a doctor to agree with me though. After developing this gambling problem I asked my new doctor if I could try Cogentin. He was intrigued by the idea and prescribed it for me. I got the prescription last night and was able to try it. I waited until the restless leg symptoms built up pretty heavily just to make sure that I could be sure it was effective and I didn't just have a night without restless leg - which happens occasionally. Once the symptoms built up I took 1 tablet - which wasn't quite enough. Then I took one more and the symptoms went completely away and I slept well.

So far so good. I'm going to try it for a week and let you know what happens. The benefit of Cogentin is less side effects and also less costly. The medication is generic. The side effect of compulsive behavior like shopping and gambling is extremely damaging. Also I found the nausea and hangover effect to be slightly damaging to my lifestyle.

James O.

Medical Response

Cogentin has both anticholingeric and antihistamine properties. Due to the antihistamine actions, one would suspect that this drug should worsen RLS. Therefore, I cannot explain why Cogentin would help your RLS.

If the Cogentin turns out not to help you in the long run, you may want to consider other medications such as the painkillers or other anticonvulsants such as Lyrica.

A Response from James O.

Sent: Wednesday, August 08, 2007 10:36 AM
Subject: Re: potential new RLS medication

Correct, I jumped to conclusions too soon. It is actually making it worse. I hadn't heard of Lyrica. Pain killers are off limits for me.

James O.

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