Patient letters on RLS symptoms and remedies- Page 78

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Sent: Saturday, November 03, 2007 7:41 PM
Subject: I need to find Q Vel but can't anymore

Good evening, I used to take Q Vel for my restless legs and it worked very well but it has been taken off the market. Is there any way that I can find it again?
Any help from you will certainly be appreciated.

Q Vel (quinine sulfate) is not available any longer. The FDA has only approved quinine for treating Malaria and as such there is only one brand left on the market by prescription (that is also very expensive).

Furthermore, quinine does not help RLS but does help the unrelated problem of leg cramps.

Sent: Sunday, November 04, 2007 7:54 PM
Subject: At my wits end.

I am a 45 year old male, and I have primary RLS, it is familial, and have had symptoms for 25 years. I was diagnosed with PLMD with a sleep study, and RLS at that time, about 10 years ago. I was put on Sinemet, and rebounded and augmented quickly, within a month. This was treated by increasing frequency and dosage, and of course making things worse. I was being treated by a Neurologist at my local hospital, so I sought out a sleep specialist. His wife has RLS, so he was knowledgeable about the condition. I was taken off the Sinemet, put on Permax and Klonopin, monitored for 6 months, and was sent to my Primary Care Physician for continued treatment.

I eventually asked to go to a shorter life benzodiazepine, like Xanax or Valium. I was looked at with much suspicion, and was told that he only had 1 other patient that he prescribed it to, but he did prescribe Xanax, reluctantly. That was 8 years ago. I was starting having problems with augmentation on the Permax after 4 or 5 years, and treated it with portions of the evening dose in the early evening. I couldn’t do this during the day, and was tortured because I had to do a lot of driving with my business. (I should give you a picture of what I hooked up in my work van, I took a 2” rubber hose, and duct taped it to one of the a/c vents to try to keep my legs cool to prevent attacks)

Around the same time as my diagnosis, my feet, which have always hurt me, got progressively worse. I went to an Orthopedist, got cortisone shots and custom orthotics made. It didn’t make any difference and was told surgery was my only option to try to make them feel better, so I continued to self medicate with Advil, Tylenol, Aleve, etc. It finally got so bad that I quit being a chef, and started a business so I wouldn’t have to stand all day. That helped the feet, but made the daytime RLS worse. I also experienced leg pain during the day. This shouldn’t be RLS, as I would be standing at the time. I joked with my PCP that I was miserable if I was standing or sitting. He put it down to getting older.

When Permax was removed from the market, we tried Requip first, and I could only stay on if for 3 days. The augmentation was horrendous. We then tried a battery of the following drugs: Ambien, Neurontin, Wellbutrin, Trazodone, Seroquel, Zyprexa, Rozerem, Klonopin once again, all to no avail. If you see the pattern, he was thinking I was depressed from the lack of sleep and the pain. (I have returned to being a chef, and the foot/leg pain is just about unbearable) He also feels that I am ADHD, but then again so did my wife until she insisted I get tested. I am most definitely not. Like a lot of RLS sufferers, I try to keep very mentally active when at rest. The test came back as normal.

When I insisted he read the Mayo Algorithm, and after much persuasion I got some Vicodin, but it didn’t help much although I got a very pleasant feeling from them. I finally got some oxycodone dosed at 5 mg 4 times a day. But then I realized for the first time in 25 years, I could actually walk without pain if I took 10 mg. So I started using them during the day for pain, and for relief of the RLS symptoms at night. I went through my prescription if 15 days, and went back to get more. I was refused, and rightfully so, as I did not take them as prescribed. I have not run out since then. I had discussed my concerns for continued use of DA’s, as I have augmented on 3, but my PCP insisted I try the Mirapex.

As I titrated up, the angrier I got, the more my legs hurt, and the less sleep I got. It finally landed me in the hospital with stroke like symptoms when I reached 1 mg. While at the hospital, overnight, I had no meds at all (The nurse gave me Mirapex, along with all the other usual meds, and I quickly threw them all up) All night long I could not get my upper body warm. I had 8 blankets on my chest, and had nothing on my legs. I understand that DA’s can affect body temperature regulation. I did not have a stroke, but when I left the hospital, all my senses seemed renewed. I could hear people on the other end of the phone from another room, smell cigarette smoke a block away, I could not eat meat due to the taste.

I had been asking for a referral to a Neurologist for several months, especially after the extreme symptoms I got from the Seroquel, but was denied. I finally insisted after going to the hospital that he refer me to pain specialists, Neurologists because I couldn’t exist much longer. After being turned down by 2 pain clinics, and the Neurologist appointment being months away, I contacted my previous sleep specialist and got a referral to him within a week.

The sleep specialist was absolutely against using opioids of any type, and basically threw up his hands and said there is nothing I can do for you. I got a referral to Duke University Neurology, but had to wait a month and a half to get the appointment. That appointment was last Friday. I sent an email to the Doctor listed on the Foundation’s site with a quick history. I was assured by the sleep specialist that Duke would do what ever it would take to find out my best options. When I was seen, I was asked repeatedly why I was on oxycodone by the first doctor. The Neurologist came in and tested reflexes, and asked if the Permax was working so well, why I wasn’t using it. I explained that it was pulled from the market 8 months ago, but if you wanted to write a prescription for it, I could get it out of Canada. Both Doctors looked confused about Permax being withdrawn. I was told very sternly that the clinic, under no circumstances, issues any prescriptions for opioids. I said that I really didn’t care, I am looking for relief. I then asked about Neupro, and got more confused looks. They both excused themselves, and the doctor returned with a sample and a prescription. I know Neupro is another DA, but I need sleep until I can find a real solution.

At this point, I was angry, very angry, but kept myself under control. I asked if the Neurologist was an RLS specialist, and was told that he was the attending. I then asked why wasn’t I being seen by an RLS specialist, as all the notes of my treatment history was sent over a month ago by both my Primary, and the sleep specialist, and I was under the impression that it was understood the dire circumstances I was facing. The doctor came back, and found the paperwork, looked over, and said that she would have to refer me to the RLS specialist. Arrgg!! I took time off of work to drive 2 hours to be referred to someone that I should have been seeing in the first place. Anyway, I was refused the referral at the checkout because the doctor will not see private pay patients.

So here I am on my 5th DA, the Neupro it’s 65 degrees, and I’m sweating. I have a headache, and it my leg muscles are grinding. I am acting differently in a bad way, I feel the same way I felt when I started the Mirapex. I am very worried about the outcome of using this medication.

I am presently taking 900mg Neurontin (2 300 mg x 3) 20 mg Oxycodone (5 mg x 4), 4 mg Xanax ( 2mg x 2 during the day, and 2 mg at night for sleep) I am not presently having the creepy crawlies until early evening due to being on my feet all day, and I don’t notice if my PLMD is improved. My ferritin levels are above normal without taking supplements. I am healthy in all other regards, except I cannot quit smoking due to the stresses. I have just started the Neupro, and was using the very last of the stash of the Permax I with held just in case for the last month.

At this point I feel mistreated by the medical community. If this was sleep apnea, I would be cured. If it was diabetes, it would be under control. My life is just about in ruins. My wife is ready to take off, and my job is ready to fire me. (I fell asleep twice while on break, and have been told that if it happens again, I’m gone. Yes, they know full well my condition and I keep them informed on what is going on) I feel persecuted for knowing that I should stay off the DA’s for a while and go to an opioid. My PCP has refused Ultram, as well as Duke.

Walter S.

Although we were all not using Permax much (if at all) just prior to its withdrawal, it is still somewhat surprising that any neurologist would not be aware of the drug company's decision to withdraw Permax several months ago.

You should also be careful with drugs like Seroquel and Zyprexa which also tend to worsen RLS.

There are really no true "RLS specialists" other than those of us who are very interested in the disease and do a lot of work in this area. Therefore, any neurologist (especially movement disorder specialists who treat very similar conditions) may consider themselves as "RLS specialists" also. As you have already found out, there expertise may vary considerably. Even some specialists who publish RLS studies or articles may not necessarily have adequate clinical experience to treat some of the more difficult cases or full understanding of the full gamut of drugs that can treat the disorder.

It does sound as if you need an opioid to treat your RLS. As you have already found out many doctors are not aware of this and/or to afraid of prescribing them. My suggestion would be to change to methadone (unfortunately, you are much less likely to get this drug compared to even oxycodone) as it tends to be even more effective and safe for RLS. You may also want to consider Lyrica instead of Neurontin (this may or may not be better, only trial and error will tell). I cannot understand why your doctors won't prescribe Ultram as it is even safer and less addictive than the opioids (and thus always worth a try).

Neupro is less well known but with its 24 hour duration, augmentation may be less of an issue (perhaps at higher doses). Again, only time will tell if it is right for you and whether your side effects dissipate.

Sent: Tuesday, November 06, 2007 10:13 AM
Subject: Requip

I am a 60 yr. old male who has been taking Requip for about a year. it has helped me sleep and stopped the worst of the symptoms but if i take more than.25 mg I get very sleepy whenever I stop moving. would there be any benefit to trying Mirapex instead or are they the same? I did seem to get some relief with Niacin when the symptoms were not so severe but it only worked for about a year.

I finally sought help when my eyelids twitched too much to read. Life is now tolerable.

It is certainly worth trying Mirapex (at .125 mg or even a half of that tablet). However, you may or may not do better on the Mirapex. If so, then you might want to consider the alternatives of gabapentin (however the anticonvulsant drugs tend to cause sleepiness) or low potency opioids or tramadol.

Sent: Tuesday, November 06, 2007 1:46 PM
Subject: RLS and augmentation and alternative therapies

I have written to you before and found your responses most helpful. I have had RLS for about 30 years. I have been on Requip for about a year. I have RLS pretty much 24/7, but this was also before I started Requip. The Requip is working well for me and I take 4 x .5mg pills spread over the day. It took about 2 months to work out my own regime for taking the medication as my doc had originally prescribed the 2mg dose upon going to bed.

I don't believe the 24/7 symptoms are anything to do with the Requip, but what I would like to know is, what is the average time before one could expect 'augmentation' to occur. I dread my Requip ceasing to work. And also, is my daily dose reasonable, or on the high side.

Also if I am going to the movies, or some such, is it OK to take an extra .5mg (i.e. slightly over the prescribed daily dose) considering that is a situation where mobility is really severely restricted.

Sometimes if I have a day where I am more mobile i.e. not at my desk job, I find I can delay/reduce the doses during the day and not actually take my full daily dose.

By the way, I have read lots of alternative 'treatments' on your letters pages and would like to say I have tried most of them, and none of them were worthwhile. I have had natural oils shipped to me from the other side of the world. - a waste of money!! the soap idea.... hubby laughed and I'm not surprised!.. a laugh was all it was good for. Cooling gels lasted only for a few minutes. Though putting my feet and calves in a bucket of icy cold water for about 15 minutes often did the trick and calmed things long enough to get to sleep for a couple of hours.

Betty R.,
Northern Ireland

Your dose of Requip is fairly reasonable as about 70% of patients need 1 mg and 94% do well with 2 mg or less. Augmentation may occur within days on rare occasions but it typically takes about 2-4 months to present. One study found that if augmentation did not occur within 2 years, then it was extremely unlikely for it to ever happen.

Although taking an extra preventative dose of Requip before movies or other sedentary activities may be fairly reasonable, alternative choices such as low potency opioids or tramadol can be equally effective and reduce the chance of side effects from the dopamine agonists (Requip) including possibly even augmentation (although we do not have any hard evidence to support this issue).

A Reply from Betty R.

Sent: Friday, November 09, 2007 8:25 AM
Subject: RE: RLS and augmentation

I will be seeing my general practitioner in two weeks and will ask him about an opioid for occasional use... so as not to increase my Requip. I don't know how he will feel about this. He did once give me 15mg codeine for a 9 hour plane journey.

I'd like to ask you what you consider to be a low dose of an opioid, but sufficient to work for individual situations like movies etc. when my Requip isn't just reliable enough.... I'd like to be aware before I go to doctor.

Low potency opioids include Darvon, codeine, and the smaller doses of Vicodin. The lowest dose that is effective should be used. Tramadol (Ultram) is a good alternative that is not really an opioid.

I have RLS 24/7 which is more or less controlled by Requip 2 mg spread over the 24 hours. There is some breakthrough which I can deal with ok as I prefer not to up my dose. I had asked you previously about my problem with sleep i.e. I wake up a lot so don't get deep sleep, and about once every 2 weeks would have a night with no sleep at all, not necessarily because of RLS, just no sleep. I usually operate with approximately 4 - 5 hours sleep per night. (with wake-ups).
I had also asked you about dealing with particular situations such as sitting in the movies etc.

Your suggestion was a sleep aid such as Ambien, and a low dose opioid for the movies situation. Today I went to my doc, to discover my regular doc was off, and our retired doc was covering his clinic. The retired doctor gave me 60 x 15 mg codeine for using when required in an immediate situation such as movies etc.

However, Retired doc said that NO WAY was he happy about prescribing a sleeping pill which would be addictive. He preferred that I try amitriptyline 10 mg, one or two pills as required, to assist sleep, not for depression etc. just for sleep. He would not budge on this. I explained that this was known to be bad for RLS but he said that all people react differently and that I should try it for a few weeks. So I now have the pills but I am not happy to take them. I do not wish to 'make waves', and actually thought about not taking them and just going back in a few weeks and saying that I took them and didn't have a good reaction... but this doesn't lie well with my conscience.

My hubby says I should just make a point of seeing my usual doc and state the facts and that I am not happy with his colleague's opinion. However I do not wish to appear to undermine his medical practice!!

Betty R.

Amitriptyline has been used for over 30 years to treat depression and anxiety. It has been mostly replaced for that purpose by the newer more effective anti-depression drugs that also have fewer side effects. It is still used extensively (by primary care doctors) for its sedative side effects as a non-addicting sleeping pill. However, the drug has several side effects (less so at the lower doses given to you) and tends to cause next day sedation. It also worsen RLS for most patients and thus we strongly advise against its use with this condition.

Drugs like Ambien (zolpidem) and Lunesta have extremely low incidences of tolerance/dependence/addiction. Their use is very safe and only doctors who are not aware of the literature would have concerns about using them. As a consumer of medical services you have a right to demand the best care for your problems. You would not accept or act upon second rate advice from any other service provider (such as a carpenter, house painter, car mechanic, etc.) so that you don't "make waves". As your health is even more important, I would suggest that you demand only the best treatment and if you don't get it, seek out someone else to take care of you.

I have stated many times that for RLS to be treated properly, the doctor must work together with the patient to render the best care. You will not get this care if you let doctors who are not that well versed on RLS and sleep (which is typical of many primary care doctors as they do not get much training on these topics) manage your problems without adequate input from you.

Sent: Thursday, December 06, 2007 1:57 PM
Subject: RLS and amitriptyline?

I would just like to update you and thank you so much for your response with regards to my previous question about amitriptyline which was prescribed for sleep by a doctor at my medical practice who was not my regular doctor. He is actually retired and came in to do unexpected cover in the surgery due to staff illness. I was not happy about this medication and following your advice, did not use the amitriptyline. I returned to my regular doc yesterday armed with the Mayo algorithm and your book on Restless Legs.

My regular doctor was so responsive, it was unbelievable, he agreed I should not take the amitriptyline, and after discussion decided that Ambien was not really suitable as my difficulty is not so much getting to sleep as the Requip is doing pretty good, and Ambien he says only lasts about 4 hours. My difficulty is in staying asleep, as I keep waking up and have been managing on 4 - 5 hours sleep and even this is broken with awakenings. So my doctor prescribed me temazepam 10 mg and last night I slept a full 7 hours, it was wonderful. My doctor took heed of your book and the algorithm where I had highlighted relevant sections regarding sleep aids etc.

He said that he knows very little about RLS, he actually said that he had thought it only occurred when trying to go to sleep, but that he was willing to learn, and reckons he will refer me to a neurologist, though I don't really see the point, now that I am doing quite well. I had actually paid to see this guy privately about 6 months ago. He was a very nice guy but suggested that Levodopa was a good alternative to Requip !!! So I reckon he doesn't know too much about RLS.

As well as the Requip and the temazepam, my primary doctor also gave me Baclofen 10 mg as a muscle relaxant to take as needed, and up to 3 times per day if I think I need it, along with my Requip. But I am doing ok at the moment with just the Requip and the Temazepam, just a little breakthrough now and again which I can 'walk off'. Do you think there is any merit in taking the Baclofen. I read that it can be sedating, and I also read that a side effect can be wakefulness and I don't want anything to interfere with my chances of sleep.

Thank you again. Your knowledge and care is being taken on board by doc here in Northern Ireland.

Betty R.

There is really no role for Baclofen in RLS. It does not help RLS symptom and is quite sedating. With its long half-life, it may even result in next day sedation but you should be more concerned about taking at all in the daytime.

Temazepam is a reasonable drug for maintaining sleep especially at the low dose that you are using. It does have a small tolerance/dependence issue which may be eliminated by taking regular drug holidays from the drug ( a few days off every few weeks). Although Ambien has a short half-life, it may still help maintain sleep in many users. It may still be worth a trial as it is safer for long term use (without the need for drug holidays) than the benzodiazepines like temazepam.

You are correct that there is little reason to see a specialist now that you have helped guide your doctor through treating your RLS. It is likely that with the help of my book that you may even know more than the neurologist. That is one of the reasons that I decided to write the book.

Sent: Thursday, November 08, 2007 1:20 PM
Subject: Remeron

I have PLMD and have been unable to tolerate Mirapex, Klonopin, Requip and many others. I take 10mg of Ambien nightly and seem to do ok and sleep through my arousals. I also suffer from depression and need to take an anti-depressant, but fully understand that all but Wellbutrin exacerbate the PLMD symptoms. My doctor has suggested Remeron for the depression and indicates it could help me sleep also.

Could you tell me if that could make my symptoms worse ? and any experience or information about Remeron and it's effects.

JB

There are several reports of Remeron (mirtazapine) worsening RLS. As most of the drugs that worsen RLS also worsen PLM we should strongly suspect that Remeron will also worsen your PLMD. There are no case reports or other studies that examine Remeron and PLMD.

Sent: Friday, November 09, 2007 5:09 AM
Subject: What to expect from Requip

I have been taking Requip for almost three weeks now, starting at a low dose and titrating the dose upward hoping that I would find the right strength to help my round-the-clock RLS. At the start of the Requip, I noticed a lessening of the worst symptoms during the day. However, Requip alone does not control the condition at night sufficient to let me sleep unless I add one 50mg Ultram tablet.

While Requip initially took off the sharp edge of discomfort from this condition, increases in the dose of Requip did not seem to add any extra benefit. I am guessing that there might be a time factor before the Requip fully kicks in. What should I expect from Requip as the weeks pass? Will I ever reach a point where I have complete relief round-the-clock? Or, does my present experience indicate that Requip will only reduce the severity and will not become more efficacious the longer I take it and the more I increase the dose?

I have reviewed your dosing schedule, but I do not know what to look for as an indicator that I have reached the right dose and should not increase it further. Please also note that I am taking Requip three times a day. Would there be a better result if I took it all at once at bedtime? Would I be able to "coast" for 24 hours until it is time for the next single daily dose. (Incidentally, I called the manufacturer for information. They would only give me prescribing information flowing from the results of clinical trials before the drug was released. Those trials were based on a single daily dose schedule so they would not opine or advise me on "off label" dosing schedules.)

David E
Bradenton, FL

The manufacturers are prohibited to disseminate any information that is not FDA approved. Even though they may be carrying on studies that show effectiveness for 2 or 3 times per day dosing, they cannot divulge these details to you until the FDA approves of them.

Once you have reached your therapeutic dose of Requip, it should work on the first night/day. We increase the medication slowly to avoid causing side effects. You do not indicate what dose you are taking. Typically, doses of 2 mg three times per day work for most patients. Once you go to higher doses than 2 mg, the odds are that you will get only marginal benefits from the incremental dosages. For most patients it is very easy to tell when you have reached the proper dose as all the RLS symptoms should vanish.

It sounds as if combination therapy is one of your best options. This can include the Requip with a painkiller (such as the Ultram that you are already taking or an opioid) or gabapentin (or other anticonvulsant).

Sent: Saturday, November 10, 2007 12:14 PM
Subject: Re: What to expect from Requip

Responding to Requip is turning out to be a very slow process for me and I confess that I was considering giving up on it. I am currently (for the last 2 days) taking 3mg of Requip three times daily for a total of 9mg daily. I see a reduction in the severity of the daytime symptoms though they are still present. At bedtime, I am unable to proceed with Requip alone and that is when I have been taking 50mg of Ultram which lets me sleep. I guess I am one of the unlucky ones with a severe case of RLS.

I am planning to titrate the dose further to 4mg and then to 5mg three times a day to see if I can get complete relief. If you think such doses are harmful or have little hope of succeeding, I guess I will have to try some other medication plan.

To add to your collection of patient experiences, let me mention that I went ahead with the first of two radiofrequency lesioning (see his previous letter Page 77, Monday, October 22, 2007 6:37 AM) treatments (the left side on November 8 and the right side next Thursday.) With only the left side done as of now, I cannot tell if there is any improvement since the right side is still untreated and is kicking up enough discomfort to produce what may be a "phantom" discomfort on the treated side. In the end, I probably will conclude that I should have listened to your view on this, but I have been in a somewhat desperate state looking for relief anywhere I can get it. I will keep you posted on this so you can add it to your store of information. However, it may be hard to distinguish whether improvement has come from the procedure or from Requip.

David E.
Bradenton, FL

I would be very careful when increasing the dose of Requip to 4 mg and would really think twice before exceeding that dose (of course, you should get the ok from your own doctor first). Although a very few patients will respond to those higher doses, most do not do better and often risk increased side effects.

Sent: Saturday, November 10, 2007 6:45 PM
Subject: RLS and stress reduction?

I am a 58 y/o female with RLS symptoms since early childhood, although I didn't have a name for it until the past few years. The symptoms have increased over the past year enough that I sought medical help. My doctor prescribed Requip, starting with 0.25 mg, increased to 0.5 then 1.0 mg over a three month period as the lesser dose no longer helped. At 3 1/2 months, two weeks ago, I began having severe augmentation and rebound.

The medicine helped me sleep for four hours, and is now down to three hours before the discomfort is so bad that I can no longer even lie in bed. During the day, the legs are jerking by mid-morning and intolerably spastic by evening. These symptoms are MUCH worse than anything I've ever experienced before.

I've got an appointment to see the doctor again three weeks from now. In the meantime I'm quitting the Requip and want to have my iron ferritin level checked.

My job situation is stressful and may be contributing to the increased symptoms over the years. Is there some medicine that is compatible with RLS that can be used to help deal with the stress level? I expect my doctor will want to try Mirapex next. If that doesn't work, my vote is for a pain medicine.

Virginia

It does sound as if you are experiencing augmentation with Requip. Going off the medication is a good idea. However, stopping it will cause a week or so of severe RLS symptoms. Typically, we treat this with moderate to high potency opioids.

Once you are better (after a few weeks) and your dopamine receptors are recovered, it might be reasonable to try Mirapex although you will have an increased risk of developing augmentation again.

Pain killers or gabapentin are reasonable choices for treating your RLS and you should discuss it with your doctor. Stress does make RLS worse. Every RLS patient should have their serum ferritin levels checked as soon as they are diagnosed. Iron therapy may help for those who have low ferritin levels.

Sent: Thursday, December 13, 2007 2:16 PM
Subject: RLS not under control yet

I emailed you on Nov. 10th, while experiencing severe augmentation from Requip. I've since seen a neurologist, who put me on 600 mg. gabapentin and one 5 mg. hydrocodone at bedtime. Over the past four weeks we have increased the gabapentin to 1800 mg. at bedtime. I am taking 5 mg. of hydrocodone at bedtime, but the legs are twitching within three hours. I've been taking a second hydrocodone, and each time that wears off the legs are twitchy or actually jerking me awake. I'm missing more work than I can afford, from severe fatigue.

I called my neurologist early this week, asking for help. He wants to send me on to a RLS specialist at the Univ. of VA. med school. That's 2 1/2 hours from us. They have no indication of when I can get in with that doctor. In the meantime, my neurologist refuses to increase the gabapentin or write another prescription for hydrocodone. At 10 mg. during the night, I'll run out of the hydrocodone in two weeks, and that amount is only getting me about 3 1/2 hours sleep/night. Today the neurologist wanted me to take a low dose of Mirapex at bedtime.

I thought another Requip might kill me just five weeks ago, so was aghast and refused that offer. The neurologist will consider increasing the gabapentin if I have a blood level tested. We have no insurance, and I am hesitant to go ahead and pay out the money for this test when another doctor is going to be taking over my case.

Your dose of gabapentin is already very high (I typically do not go over 1200 mg for any one dose of gabapentin and usually use doses of only 300 mg to 900 mg) so increasing the dose any higher is fairly unlikely to yield any positive results but might cause side effects (such as drowsiness). There is really no reason to do blood levels for this drug and I would not base my dose on the blood level but rather on the clinical response.

You would probably do better on methadone (5-10 mg) instead of the hydrocodone but it is quite tough to get most doctors to prescribe this drug as they do not really feel comfortable with methadone. Oxycodone may also work well and may be easier for you to get from most physicians.

As discussed before, Mirapex (at low doses) may help you reduce the need for opioids and gabapentin but you will run an increased risk (no one really knows how high this risk is) for recurrent augmentation. Only you can decide whether it is worth the risk of trying Mirapex.

Sent: Monday, November 12, 2007 8:07 PM
Subject: "Bad List" for medications that worsen RLS?

I have had RLS since childhood, however not continuously and not to such extreme I have had it for the last 3 years now. I was on Mirapex and it has become non-effective. My doctor that gave me Mirapex and Tylenol with codeine has moved to another state. The Tylenol #3 at least lessened the time I had to contend with my extreme symptoms.

My new doctor took me off Mirapex and Tylenol #3 and put me on a sleeping pill amitripylline, which was one of the first medicines I used three years ago before my RLS was diagnosed.

The list is on the RLS/PLMD Treatment Page. You can also download our medical alert card which also contains this list (and alternatives) from the Table of Contents on the homepage (#17). You should give a copy to each of your doctors.

Amitripylline (Elavil) tends to worsen RLS so I would not recommend that drug. You should see a doctor who can treat your RLS more effectively.

Sent: Tuesday, November 13, 2007 7:20 PM
Subject: Alternative healing technique?

Has anyone found relief from RLS by using Emotional Freedom Techniques (EFT)?

It is an alternative healing technique. The patient has to buy CD's from Gary Craig of Coulterville, CA. They are sold on the Internet.

Vera P.

Although none of the alternative therapies have been formally studied for RLS many sufferers have tried them. I do not know of any who have tried EFT. One has to be careful when assessing these therapies as even placebo (sugar pill) treatment helps about half of all RLS patients. Therefore, this treatments may be working through the placebo effect (which may explain why many patients feel that they work).

Sent: Thursday, November 15, 2007 6:39 PM
Subject: Requip and Prilosec OTC

Are you aware of any problems with Prilosec OTC affecting the metabolism of Requip? The informational insert I received with a prescription for Requip mentioned a possible problem with this. I consulted with the pharmacist and she was not able to locate any specific information.

TB

I am not aware of Requip having any interaction with Prilosec. Both drugs are metabolized by the cytochrome enzyme system in the liver but I believe that Prilosec is not involved with the same enzymes that metabolize Requip.

If there was an interaction the result might be some what higher levels of Requip which generally should not present too much of an issue.

Sent: Friday, November 16, 2007 9:22 AM
Subject: Nothing works!

Thirteen years ago, at the age of 42, I developed a severe case of RLS. It came on suddenly after a thyroidectomy. I have it 24 hours a day and have struggled over the years to find both doctors and medications to help me. After trying iron therapy and many medications throughout the first two years, I finally settled on Permax, which I took for eleven years. I gradually had to take more and more to control my RLS until finally the Permax became non-effective. (Along with my RLS I have gastroparesis. I was on a feeding tube for a long time, but gratefully have been able to get off of it, and I now eat on my own, but I am always nauseated. Many medications make my stomach hurt.)

In 2005 I was put on methadone, and took 5 mg in both the afternoon and evening. It worked for about six months before the RLS started to break through again. We added Requip to the methadone, and I ended up taking 1 mg of Requip and 5 mg of methadone in the afternoon, with 2 mg Requip and 5 mg methadone in the evening to control RLS in my legs, arms and hands. It worked for about a year, but I also developed insomnia.

It got to the point I could not sleep day or night, and knowing that Requip can cause insomnia I decided to go off of it and try something else. I tried using Mirapex and methadone, but my stomach could not adjust to it. I took Neurontin and methadone, but it was largely ineffective. My legs have driven me crazy now for over a year. I can’t sleep anyway, so I decided to go back on the Requip/methadone combination. But now it doesn’t work!

Constant nausea is enough to deal with, but combined with restless legs, it is almost more than I can handle. The neurologists I’ve seen have not dealt with RLS as severe as mine. My primary physician is wonderful to work with, but we need suggestions. What can I do? What should I try now?

You may want to consider adding the Neupro (rotigotine) patch. It bypasses your stomach to that the dopamine agonist medication (similar to Requip and Mirapex) can help your RLS. Typically, you would start with the 2 mg patch every 24 hours then only if necessary (after a week) increase the dose to the 4 mg patch.

You might also consider adding Lyrica (an anticonvulsant that works similar to Neurontin but is different) to see if it helps.

Sent: Friday, November 16, 2007 12:04 PM
Subject: Mirapex vs. Neurontin

I have had a moderate to severe case of RLS for the past 7 years. I have been on Mirapex during that time. My current dose is .25 in the afternoon some time and .50 mg at bed time. Recently the Mirapex has not been controlling my RLS effectively and I have been gaining weight that I feel is because I am so agitated during the evening hours. I just cant get comfortable.

I went to my family physician this Wednesday and we decided to try Neurontin. Yesterday I took 300 mg of Neurontin at 12 pm because I was feeling my legs getting jumpy. The Neurontin seemed to calm them right down. Around 9 pm I could feel them getting antsy again and I took another 300 mg. By 10:30 they were getting worse so I took another 300 mg. No relief, so I took a third dose at 11:30. They continued to get worse until 2 am when I took .75 Mirapex. By 3 am I could sleep.

Is there a weaning off period for Mirapex? I saw something on the internet during my stalking last night that said it should be decreased slowly. And if so, what kind of schedule would you recommend? I cannot have another night like yesterday!

Melanie H.

Changing to Neurontin is a reasonable option for your current problem. However, you will get very significant worsening of your RLS when suddenly stopping Mirapex. Slowly weaning off the drug (there is no set or standard schedule) may help a little but a better solution is to just use moderate to high potency opioids (Vicodin, oxycodone, etc.) for a few weeks to relieve the RLS symptoms.

After a few weeks you will likely find that you need less Neurontin to control your RLS.

Sent: Friday, November 16, 2007 7:28 PM
Subject: Pregnancy and RLS?

Is there anything that helps with RLS during pregnancy? I do not suffer with it normally--only once in a great while when I am stressed or very tired--but when I am pregnant (right now) I have terrible RLS that keeps me from getting adequate rest. Is there any drug safe to take during pregnancy? If not, are there any other remedies you can suggest?

Andrea J.

Treating RLS during pregnancy is always very troublesome. We would prefer to use no medications when possible. Almost all the RLS drugs are Category C or worse and we prefer to use only Category A and B drugs.

The two drugs that are safest and effective for pregnant RLS patients are oxycodone and methadone in low dose. I actually prefer methadone as we have a lot of experience using the drug at much higher doses with pregnant heroin addicts (who use the drug for maintenance therapy to remain off heroin).

There is not much else worth trying although it has been suggested to take plenty of iron and magnesium (not much proof that it helps, though) and regular low to moderate level exercise.

Sent: Saturday, November 17, 2007 2:07 AM
Subject: RLS worse on Requip?

I have severe RLS and am currently on Requip. The RLS returns badly during the day now, and I have to take 4 mg at night along with Ambien CR to sleep. even then, I sleep only a few hours, awakening to muscle cramps or involuntary movement in my legs. I have been off of Mirapex for one month, almost.

I called my doctor to tell him how much I was suffering, and he told me, "I don't know what to tell ya." I don't know where to turn.

Previously, I tried Mirapex, as I previously mentioned, and had horrible behavior changes and swelling in my legs feet and arms, etc. I have the swelling still, along with numbness and a burning sensation.

Marjie W.

You are experiencing augmentation from the Requip. You should stop this medication and treat your symptoms with a potent opioid (hydrocodone at 10 mg, oxycodone or methadone) or anticonvulsant (gabapentin or Lyrica). Gabapentin or Lyrica could be added later to enable you to reduce or eliminate the opioids.

Sent: Friday, November 16, 2007 10:22 PM
Subject: Medication Side Effects?

I have been diagnosed with refractory RLS and also have PLMD. I also have chronic insomnia. Mirapex did not help and Requip was a disastrous. Have also used Sinemet and Klonopin in the past. Currently, I am prescribed Neurontin (1800 mg) and Ultram/Vicodin. I alternate the Ultram (50 to 100 mg) and Vicodin (500 to 750 mg) every week or so. I take the Neurontin in two equal doses...one about 8 pm and the other about 11:30 pm. I typically take the Ultram/ vicodin about 11 pm.

Quite often after taking the Vicodin/ Ultram and occasionally the Neurontin I will get a severe bout of RLS symptoms which may last about 30 to 45 minutes and lots of "sewing machine" legs. Sometime this will happen about an hour or so after I take the vicodin/Ultram and/or as I am laying in bed. It may even seem to awaken me if I should be lucky enough to fall asleep. Sometime I think the sensations are more like PLMW as it seems the legs move by themselves and it "feels" different than what I feel are my historical RLS symptoms.

Usually this "bout" of whatever will happen once an evening and often after 11 pm or even later. Once I have had this "bout," often the rest of the evening will go pretty well although even if the legs are fine I get very little sleep. The "bout" often seems to so closely follow the med administration that, for me, it is hard to feel that there is not an association. I have tried taking the meds earlier but usually the same pattern will occur.

Your drug regimen for RLS sounds very reasonable. However, your reaction to the Ultram and Vicodin is quite unusual. Typically, if worsening occurs, it lasts several hours. Your short lived exacerbation of RLS followed by the more typical relief of symptoms is rarely seen.

You might want to try other opioids (oxycodone, methadone, Darvon, etc.) and see if your unique response carries over to all opioids. There is always a chance that changing the drug may be helpful.

You might also want to consider adding a non-benzodiazepine drug (Ambien or Lunesta) at bedtime to help you sleep.

Sent: Saturday, November 17, 2007 2:00 AM
Subject: RLS and foods?

Is there any connection between RLS and NutraSweet? What about white sugar or white flour. Pizza seems to do it for me too!

No connection between RLS and NutraSweet has ever been documented. Since this is such a commonly used product we would have heard more complaints about worsening RLS if they had a connection.

Carbohydrates, especially refined ones tend to bother many RLS patients. However, this is simply anecdotal experiences as no formal studies have been done to verify this information.

Sent: Monday, November 19, 2007 7:30 AM
Subject: RLS and Major Life Decisions?

My husband has had RLS for 10+ years. It's difficult to live with chronic pain for both him and me as his spouse. In the last six months he's gone on the following medication; Xanax, Cymbalta, trazodone, Requip, Ambien and hydrocodone and he's recently told me that he loves me but he's not sure he wants to be with me anymore. All of these medications taken together absolutely frighten me and have caused a change in his behavior; moodiness, lethargy, lack of sex drive, etc..

Cymbalta usually worsen RLS so that drug would only exacerbate his problem. Xanax, Ambien and trazodone do not help RLS (or hurt it) although they do help RLS patients sleep (if their RLS symptoms are mild enough to let these drugs work). They work much better once the RLS symptoms have been mostly relieved by other medications.

Requip and hydrocodone usually help most RLS patients assuming that they do not have side effects that limit their use and that they are used correctly.

Most all RLS patients can get relief and live a normal with proper treatment. However, most doctors and many specialists are not that familiar with the more advanced treatment of this disorder. You should seek out a specialist that can treat your husband with all the available tools. That should solve his RLS problems and your marital ones.

Sent: Thursday, November 22, 2007 5:19 AM
Subject: Mirapex for RLS?

I am fortunate to found your website several years ago. As a result I have been taking Mirapex for about 5 years. I am a 64 year old male. I take .5 mg at about 5:30 pm. I have gradually increased from .125 mg. I have been at .5 mg for a couple years. Is this a problem at this level of dosage, how long can I expect relief from this drug before it becomes ineffective, how high of a level is sensible if it becomes necessary, and could Mirapex cause increased appetite or weight gain?

Also could I take a smaller dose earlier in the day due to some afternoon discomfort due to sitting at a desk?

The usual dose range of Mirapex is .125 mg to .75 mg. Your dose is still quite reasonable. With time, RLS tends to worsen so you may need more medication. We generally to not like to increase any individual dose over .75 to 1 mg. Most RLS patients go for years or decades before needing more medication.

For afternoon RLS problems when sitting for longer periods you could take an extra dose of Mirapex. As symptoms tend to be milder earlier in the day, most need a smaller dose (like .25 mg in your case) to get relief at that time.

Weight gain may occur with Mirapex (usually due to retention of fluids) but increased appetite would be a more unusual side effect for this drug.

Sent: Friday, November 23, 2007 3:38 PM
Subject: Methadone for RLS?

I have just been given methadone for RLS and I am fearful of this drug's reputation. Do you have any opinions on this medication.

Methadone is considered by some experts as one of the best opioids for patients with moderate to severe RLS who do not do well with dopamine agonists. When used in low doses (5-20 mg per day) it is very safe and effective for treating RLS. When used for heroin addicts, the average doses are between 80-120 mg per day.

Sent: Friday, November 23, 2007 9:46 PM
Subject: RLS worse with standing?

Could you intensify symptoms of RLS by being on your feet all day? For example, standing in the kitchen cooking for hours at a time.

Increased physical stress to the legs can worsen RLS. While mild stretching or other exercises may help RLS symptoms, vigorous or prolonged exertion tends to worsen it.

Sent: Saturday, November 24, 2007 10:35 AM
Subject: Requip and Insomnia?

I tried not to take Requip last night and have not slept all night. The restless legs didn't even begin until around 4 a.m. I never had terrible restless legs. A sleep doctor told me Requip would help me even more than drinking tonic water for my occasional problems! Now I'm up to 2 mg a day and have terrible, terrible restless legs which are only lessened 50% of the time by Requip - which I should never have started taking in the first place.

I tried to go the night last night without it and my body won't go to sleep without it - not even bringing restless legs into account... they weren't the problem for hours and hours! Is this addition withdrawal?

Linda W.

It is not uncommon for RLS to worsen when suddenly stopping Requip (or any other dopamine agonist drug). However, I cannot explain why you would have insomnia from stopping Requip which is not due to RLS. It is quite likely that your problem with go away in several days.

Opioids or Sinemet used only when symptoms occur are actually much better treatments for intermittent RLS. There is no reason to take daily (and especially large doses) doses of Requip for that purpose. For now, opioids would be a good choice to treat any RLS symptoms that occur while washing the dopamine drug out of your system.

Sent: Saturday, November 24, 2007 6:52 PM
Subject: Re: Requip and Insomnia?

I will take this with me to my neurologist appointment Tuesday. I tried to take 1 mg of clonazepam tonight figuring it would certainly help me go to sleep after not even as much as dozing last night - it only made sense since I'm exhausted. I got very tired and went to be, happily thinking I was going to go right to sleep, which I did. I woke up 1/2 hour later with restless legs! That was 3 hours ago.

I have now given up and taken the 2 mg of Requip. I will wait until Tuesday and hope the neurologist can give me something in place of the Requip.

Linda W.

Although clonazepam is often listed as a drug that works well for RLS, it does not actually treat RLS symptoms. It simply helps RLS patients get to sleep despite their RLS symptoms (similar to taking it for back pain that is preventing you from falling asleep). It also has a 40 hour half-life so can easily result in next day drowsiness which is why I do not recommend this drug at all for RLS.

I have had RLS since I was a child, but it was always manageable. Three years ago the Mayo Clinic gave me Mirapex because of the RLS and my complaint of fatigue. My primary care doctor gave me Ultram because of muscle pain. I stopped taking the Mirapex after a few months and took the Ultram for a year. During that time I stopped all alcohol (I have never smoked and stopped coffee many years ago) and switched to a dairy-free and gluten-free diet to see if the changes would help with the continuing fatigue and muscle pain.

One day I had a seizure, that the doctor said was caused by the Ultram. She immediately had me stop taking it and I went into withdrawal. The pain was intense and the RLS was so bad I could not sleep. She prescribed Ambien and Lyrica but neither did anything for me. After nine days of not sleeping, my husband took me to the emergency room where they gave me Benadryl. This made the RLS unbearable and I had an overwhelming need to walk. They wouldn't let me and when I insisted they locked me in the psychiatric ward. After I took a battery of tests the doctors admitted I had a reaction to the Ultram and the Benadryl and that I was not anxious or depressed.

The hospital gave me a prescription for Requip. I took the Requip for 4 months. During that time I had a kidney stone and was given Vicodin for the pain. I only took 4 - 5mg tablets for the kidney pain, but noticed that the Vicodin took away the "restlessness" and allowed me to sleep. I was left with 46 tablets of Vicodin at the end of July. Then the augmentation began. I was having restless legs earlier and earlier in the day. And would occasionally take the Vicodin. I decided to get off the Requip. Requip withdrawal was not fun either. But I had the Vicodin, so every third day I would take 2 and be able to sleep. It took me three weeks for the RLS to calm down.

I am now through the Requip withdrawal and am taking the Vicodin in the following way: At 8:00 PM I take 1/2 of a 5mg tablet. This stops the RLS symptoms. At 10:00 I take the second 1/2 of the tablet and that helps me sleep. I am still abstaining from alcohol, coffee, tobacco, gluten, sugar, wheat, dairy and I have also began taking magnesium and calcium and have been using some of the "tricks" in Jill Gunzel's book. My hope is to be able to get this under control and get off the Vicodin completely. But until then, do you see any problem with my using 5mg of Vicodin daily? I have about 20 of the Vicodin left and will soon have to approach my doctors about getting a prescription for more.

Terri S.

We commonly use opioids for refractory RLS (that does not do well with dopamine agonists like Requip). You dose is very low and should be quite safe. Vicodin does contain acetaminophen (Tylenol) which has not benefit for RLS so you are exposing yourself to a drug (which is fairly safe) that has no upside for RLS and can thus only cause harm (although the risk is very minute). Better choices for long term use are the more potent opioids (just take a half or less of a tablet) that come without acetaminophen attached (like oxycodone or methadone).

You should download one of our free medical alert cards (from our homepage) that contains the info about RLS "unfriendly" drugs like Benadryl and give a copy to any doctor treating you (such as the ER doctor who would then have known not to give you the Benadryl).

Sent: Wednesday, November 28, 2007 4:33 PM
Subject: Klonopin for RLS?

I have had mild RLS my whole life (age 50). I usually can handle it without medicine. I use Klonopin about 3x a month in the summer and about 1-2x a week in the winter, but I cut my .5 dose pill into quarters, so it is a very small dose. I developed frozen shoulder, which makes sleeping pretty uncomfortable. It seems to be making my RLS worse since I just can't ever get comfortable in bed, and I reach for the Klonopin more. I don't want to use this drug too often, so I researched your site, and came up with the conclusion that a small dose of Ambien would be better.

My frozen shoulder will probably take many months to go away, so I need something to help for the long term. I asked my doctor today for Ambien, and she said she doesn't recommend it since it is still addicting, even though your site said it is not. She wants me to take Requip, but I hesitate to take this on a daily basis because of the reported side effects and daytime sleepiness and possible rebounding.

You are correct in most of your conclusions.

Klonopin is actually quite addicting and has an very long half-life (40 hours) so causes next day sedation. Ambien has a very short half-life (2.5 hours) and is rarely addicting (just a few case reports out of millions of people who have used it). Your doctor clearly does not have adequate knowledge about these sleep drugs.

For RLS that is mild enough so that you only need medication intermittently, Ambien would be an excellent choice if it puts you to sleep and thus takes care of your RLS problems that night. Furthermore, even if it was an addictive drug (which it is not), when taken on an intermittent basis there is absolutely no chance of addiction.

Other choices that work on an as needed basis are Sinemet (not to be used daily as it can cause augmentation but very safe when used intermittently) or a painkiller (an opioid or tramadol). Both of these also work very quickly to relief RLS symptoms so that you can then fall asleep. Even with the painkillers, there is no chance of addiction when used occasionally.

Using Requip daily for symptoms that require medication only 3 times per month really does not make sense and is not good medical practice. However, at the low doses used for RLS, the side effects occur in only a very small minority of sensitive patients.

My RLS has mostly resolved, due to bringing up my ferritin following a severe iron depletion. All I have left is some residual creepy crawlies, (still drives me buggy) strictly in one leg now, instead of both. The last few days I've had some in same side arm. But I do not have any of the four RLS criteria anymore. I have heard you say one has to have all four to be diagnosed with RLS.

Someone once wrote to you saying they had the creepy crawly sensation, but none of the other criteria, and you told him he does not have RLS.
Does this mean I don't have RLS anymore, despite the residual sensations?

Linda in Lakeport, CA

It is quite different once you have a diagnosis of RLS and treat it (so that symptoms are lessened or gone) compared to someone that has never had the disease. In your case, you clearly have treated RLS and the residual symptoms are most likely due to RLS.

Do your residual creepy crawly symptoms come on only at rest and get better with activity or are they present when you are walking? If they occur with when moving then they may actually be due to something else (like a neuropathy).

For someone who has never had RLS, they must fulfill the 4 criteria or the diagnosis is suspect. There are supporting features (family history of RLS, presence of PLMS or a positive response to a dopamine drug) that may still support a diagnosis of RLS when it is not clear if all the 4 criteria are actually present.

Yes, I had PLMD very early before and during my iron therapy, but has been long gone.

My creepy crawlies are present most of the day, more days than not. But it comes more in waves now, rather than steady. No, I don't only have it at rest, also when moving/walking around, though maybe only slightly improved. Pretty much daytime only

I've had a flare up the last several days, it really has been mostly better before this. I am due for my period, so wondering if it is from this.

Also, I am doing a slow taper from Klonopin and Seroquel. (for previous insomnia) My doc said my RLS may come back from coming off Klonopin, so I'm also concerned that being on the Klonopin may have been the only reason my RLS got better in the first place, though I know you say it only puts you to sleep, doesn't help RLS. But it could also be just a flair up due to withdrawal symptoms. Is this possible?

Thanks again so much for your help,

Linda

If the symptoms get somewhat better with movement, then RLS may be somewhat more likely, but in your case it is certainly hard to be sure.

Klonopin rarely improves RLS symptoms (except for a small minority of patients who claim they get relief of symptoms with this sedative) but does help RLS patients sleep as you have mentioned. Perhaps the stress of withdrawing from the Klonopin may induce some worsening of your symptoms (whether RLS based or otherwise). A trial of Requip or Mirapex may be more helpful to both diagnose and treat your problem.

Sent: Monday, December 03, 2007 7:04 PM
Subject: Any advice?

I have severe RLS and severe sleep apnea which has been reported in several sleep studies except they call them PLM’s. My RLS is severe pain in my legs that goes away when I move. I have tried Requip and Mirapex which caused insomnia for me. The doctor changed me to Sinemet, which causes vivid disturbing dreams to say the least.

What do you think my next step should be? The Sinemet seems to work but the dreams are out of this world. Its nice to dream again but not like this.

Sleep apnea and PLM are totally separate diagnosis. However, body jerks occur after apnea events which may appear similar to PLM and PLM are often associated with sleep apnea.

You should not take Sinemet on a daily basis as it will cause augmentation (worsening of your RLS) eventually. You next course of treatment would be an anticonvulsant (gabapentin, Lyrica, etc.) or a painkiller (opioid or tramadol).

Sent: Wednesday, December 05, 2007 2:58 AM
Subject: Treatment for PLM and RLS?

My husband aged 72 has had RLS since his late teens and has been treated with various drugs over the years with limited success. He also suffers with Periodic Limb Movement day and night and sleep apnea (wears a CPAP mask successfully).

Our local GP has little experience with RLS so after Permax was discontinued recently....he prescribed one of the drugs he had had no success with many years ago and of course still no relief until I found this site and we convinced doctor to prescribe Repreve (ropinirole which is Requip in the USA) Instant relief from RLS, but PLM has worsened.

We have had to work out a suitable dosage ....but need to know what dosage is considered an overdose. He is taking 1mg three times a day. Is there another drug that may be suitable to help PLM during the day? Or might a higher dose of Repreve help?

He also has excruciating sciatic nerve pain in his left leg and gets almost no relief when taking Panadeine. We can't thank you enough for the information we have gleaned from your site.

Repreve (ropinirole, called Requip here in the USA), generally takes care of PLM problems as well as RLS. It is quite strange that the PLM persist while the RLS is relieved. Typically the maximum dose of ropinirole is 4 mg per day but this dose can be increased a bit if necessary. Normally we do not worry about treating the daytime PLM (as they do not interrupt sleep like the bedtime ones) so your husband may only need to increase the last dose to about 2 mg.

Sciatic pain can be difficult to relieve. The Panadeine (similar to our Tylenol with codeine) likely does not have enough codeine (at only 8 mg) to take care of the sciatic pain. Higher doses may be necessary however another approach may be to add a neuropathy medication such as gabapentin which also helps relieve RLS and PLM and may thus do double duty (and can be combined with ropinirole so that you may not have to increase the ropinirole dose much if at all).

Sent: Saturday, November 17, 2007 3:01 PM
Subject: Neupro patch for RLS?

I have been taking Requip for about a year. I have started needing it more often during the day. My doctor wanted me to try the Neupro patch. I tried the 2 mg without success, the 4 mg gave me relief and I thought everything was going to be OK. The second day on the 4 mg patch, I fainted when I first got up in the morning.

My blood pressure dropped to 90 over 40. I took the patch off and am back on Requip. I remembered that I had started taking a fluid pill about 2 months ago and do not take any extra potassium. Do you know if lowering blood pressure is a side effect of the Neupro patch, or is it more likely the low potassium?

Sandi R.,
Sherman, TX

All dopamine agonists (Mirapex, Requip and Neupro) can lower blood pressure. Usually this happens most when starting the drug or increasing the dose. Taking a water pill (diuretic) increases the risk of this low blood pressure effect especially if you happen to be low on fluid intake on the day that you fainted. Your problem likely has nothing to do with potassium.

It's been awhile since I've written. Yours is the most knowledgeable site (and book) there is on RLS, so whenever I get into trouble, I come here. I have very severe RLS (probably due to the medications like carb/levo) that I was treated with when first diagnosed with this disorder 10 years ago.) I suffer from augmentation due to Mirapex and was advised (by you) to quit taking it but so far haven't been able to completely do so even though I tried methadone.
I take a combination of hydrocodone and Requip during the day and gabapentin and Mirapex at night. I rarely have a day that I'm RLS free, but I cope most of the time.

The reason I'm writing now is that I've been diagnosed with ovarian cysts (I'm 52 but pre-menopausal). I have a very large cyst (nearly 6cm) that needs to be surgically removed but also have other smaller cysts that look suspicious (cloudy, not clear) on the sonogram. I am to see a Gynecologist for a second opinion this coming week and will be having a CT scan but the assumption is that I will need to have a laparotomy in the next few days.

I'm scare to death. I know they do not let you medicate yourself in the hospital and I really doubt I will be able to convince the aides and nurses that when I need medication..... I really need my RLS medication. Any doctor that doesn't understand RLS may not approve of my meds anyway. It's also feared that at least one of the cysts may be cancerous which will definitely mean a hysterectomy, a longer hospital stay, instant menopause, a long recovery of not being active and possibly chemo.

I've always dreaded any kind of surgery but this is probably all my fears combined into one and I don't know where to turn. Surely you've seen other RLS patients in similar predicaments, can you offer me some advice? I've never been so scared in my life. RLS is a bad enough curse without the terrible fear that comes with the threat of surgery and cancer.

Generally, the immediate post-operative period is not a great problem as your doctors will give you high doses of potent injectible opioids. This should cover you for the first day or so. Even with a total hysterectomy, these days they tend to send you home very quickly (sometimes as soon as 2-3 days after surgery or less). At that point, you can take whatever you wish. You may need extra medication as you will be more sedentary after surgery.

You can also help to prepare your doctors by copying the section of my book on surgery and RLS or giving them one of the pamphlets on this issue from the RLS Foundation.

Sent: Sunday, December 09, 2007 4:12 PM
Subject: Treatment for RLS, with narcolepsy and after a heart attack?

My mother aged 71, who lives in South Africa, has had RLS for many years. She had a massive heart attack in early October, and in the emergency trip I made over there then, I became aware of the severity of her RLS condition. Her neurologist had started her on Carbilev 25/100 - known as Sinemet in the US - early this year. Doing research on RLS I realized that she appeared to have developed augmentation, as she had increase her Sinemet dosage to 6 or 7 tablets a day, and her RLS has been getting unbearable.

Reading recommendations on your website I suggested she request to try Requip instead of Sinemet. She has been given a prescription for Requip, however has not been given clear instructions on how she should be using it. She also suffers from narcolepsy, and because of this and her heart condition, I would very much appreciate your reviewing her current medications for potential interactions and guidance on how she should be using the Requip. Her medications are as follows:-

On waking -- I x Methylphenidate 10mg. [Ritalin]

With breakfast.--- 1 x Prexum Plus [Biogram S.A. Pty Ltd.]
1 x Zildem 180 S R [Adcock Ingam Ltd.]
1 x Myoprin 100mg. [EFT]

Eleven a.m. ------ 1 x Ritalin LA 20mg.

With evening meal ----- 1 x Sandox Atenelol 50
1 x Crestor 10 [Rosuvastatin]

As part of the change over to Requip, she had reduced her Carbilev to 3 tablets a day, and then last Thursday stopped taking it totally. On Friday she started using Requip (she was given the .25mg tablets), but has been taking them when she feels the RLS starting, instead of just once a day. Last night she took 3 tablets spread out over the night, and then during today she had another 1 tablet around midday. She is experiencing nausea, but I believe this is common when starting Requip.

She had major complications after her heart attack, and during the extreme pain she went through before she was able to have by-pass surgery, I gave her my word that I would do all I could to find a way to help ease her RLS. Any and all guidance and suggestions you can provide would be wonderfully appreciated!!

Although Requip is approved for only once daily use (as that is the only way that the drug company GSK has so far tested it to get approval for its use), many RLS specialists use the drug up to three times daily when necessary. The drug should be started at the .25 mg dose and taken 1-2 hours before symptoms typically occur (it is much easier to prevent symptoms as compared to getting rid of active symptoms).

It the symptoms begin earlier in the day (before about 7-8 pm), then an additional dose can be taken prior to these earlier symptoms. After 5 days (and each subsequent 5 days), your mother may increase each dose by .25 mg if necessary to treat any residual symptoms. She should try to stay at the lowest dose that relieves her RLS problems (which is much easier to do if she takes the pills before symptoms occur). While she is trying to find the correct dose level, her doctor should prescribe an opioid (like hydrocodone) which rapidly treats any symptoms on a short term basis.

Her doctor should not have given her the Requip without very clear instructions and guidelines on how to use the medication.

PS: Provigil (modafinil) is a much safer drug for narcolepsy (but somewhat more expensive) especially for a heart patient.

Sent: Thursday, January 17, 2008 10:33 AM
Subject: RE: Treatment for RLS, with narcolepsy and after a heart attack

My mother's restless legs have being very much better with the Requip. Unfortunately last week she had a very bad spell and thought it might be because she had started an arthritis medicine called Coxflam. Do you know if this is recognized as bad for restless legs?

Also, on the Requip - could you please confirm whether it is preferable to increase the dosage taken at one time, or whether it is better to stay on the lower dosage, but take more often? My mother is still taking the .25mg, but has been taking them more often than 3 times a day - if she feels the symptoms coming on.

I would like clear confirmation whether this should be done, or whether she should rather be taking a higher dose at one time, and that this will then last longer?

Debbie K.

Coxflam (meloxicam) is an anti-inflammatory drug that does not affect RLS.

Each dose of Requip should last about 8 hours. If all RLS symptoms are relieved for those 8 hours then the dose should not be increased. If symptoms start recurring before 8 hours (such after 3-5 hours), then increasing the dose would be the way to go. If she need the Requip more than 3 times per day on a regular basis then she likely needs an increase in her dose.

Remember that it is better to take Requip 1-2 hours before symptoms occur as it is harder to eliminate symptoms compared to getting rid of symptoms once present. If your mother knows she will be sitting a lot (such as going to the movies, car or plane trip), then she should take the Requip 1-2 hours prior to this sedentary activity.

Sent: Sunday, December 09, 2007 7:10 PM
Subject: Mirapex The God send Now Satan

I have been on Mirapex for around 5 years. Just a short time ago I realized all my symptoms I have been having was from Mirapex ! My Neurologist Is weaning me off them. If that is possible ?

Right now my legs are driving me crazy!!!!!!!!!!! I can't sit sleep, or think All I won't to do is get a Mirapex to stop this horrible feeling in my legs even though I have been going through another hell from the side affects:

forgetfulness
hand trembling
dropping things such as cigarettes and setting myself on fire!
falling asleep
weight gain
etc. the list goes on & on

I pray to God I can make it And get off Mirapex And find an alternative for them to help my RLS. If anyone has some how got off Mirapex, please let me know .

Loraine

It is difficult for anyone who is not completely familiar with your case to comment whether all of your symptoms are due to Mirapex side effects or not. Mirapex can cause most of the side effects that you list however it is quite unusual for them to occur all together in one patient and as severe as you indicate. The only way to know for sure is to get off the Mirapex in which case the symptoms will go away within a day or two.

There is no good reason to wean off Mirapex. As you already know, RLS symptoms go into hyper-drive when Mirapex is suddenly reduced or eliminated. The best way to shorten the suffering is to stop the Mirapex completely so that in about 1-2 weeks your RLS will be back at baseline and your side effects (if they are due to Mirapex) will also go away quickly.

The worsened RLS symptoms can be treated with opioids (hydrocodone or if this is not potent enough then oxycodone or methadone). They should cover your symptoms for about a week or two at which point you will have to decide on other long term treatments. This can include lower potency opioids or tramadol or anticonvulsants (gabapentin or Lyrica, etc.).

Sent: Monday, December 10, 2007 2:54 PM
Subject: RLS and Celiac disease?

I just came across your site and saw the response about RLS and Celiac Disease. My Dr in Atlanta does believe there to be a link between the 2. The 3 members of my family who have RLS also have Celiac. If any of us eat something with gluten our RLS seems to be worse and more painful. Also, it generates into the arms on those occasions as well.

I can tolerate the pain in the legs but when it gets to my arms, I am in misery...I take Ultram for the pain. Elavil seems to make the leg movement worse so I had to stop taking that. It was thought that the combination would help the pain, which it did, but the jerking got worse.

Although gluten is mentioned fairly often as worsening RLS, there are not too many (other than your family) who have noted a link between RLS and celiac disease (gluten enteropathy). However, as RLS goes undiagnosed very often, this link may take some time to be established.

You should check out our Treatment page which lists the medications to avoid (Elavil is included) to prevent RLS from worsening.

Sent: Tuesday, December 11, 2007 11:08 AM
Subject: RLS preventing me from obtaining health insurance?

I have Restless Leg Syndrome and have had it for about 5 years that I know of. I have taken Requip 6 mg and started throwing up. So my doctor put me on Mirapex and it has helped so far with no problems. I usually start out very low dose and then have to up it 4 or 5 times. That is what happened with the Requip. Hopefully it will not happen with the Mirapex as of now it is working good.

My problem is that I have Mega Health Insurance and the deductible is 7500 dollars. We are trying to get better insurance and they are denying me because of the medicine I take for the RLS. I tell them that I have not actually been diagnosed with RLS as my doctor said that you have to have the sleep study to actually be diagnosed with it.

Why are they denying me, is RLS that horrible of a disease, will we who have it get something else worse because of it and what is it anyway or what causes it? If you can answer me I would appreciate it greatly. I also want to know is there something like vitamins or anything natural that can help it. What is a good diet to be on with it and what kind of exercise would help? Do spas help if you have one and use it before you go to bed, I would rather do that than take the medicine.

RLS is not diagnosed with a sleep study (it helps little if at all for diagnosing of RLS) but rather by your clinical symptoms fulfilling the 4 diagnostic criteria.

Insurance companies do not really care about your diagnosis or true medical condition. They do not really have the time and resources to figure these factors in when writing policies so instead they simply tag different medications as being "higher risk". Since Mirapex is also a Parkinson's disease medication (albeit at much higher doses, although they do not check that or really care), the insurance companies assign a higher risk to that drug. It does not always make sense or work properly but it does knock out lots of potential customers (including many who do not have any increased risk).

RLS is not a "bad" medical condition in terms of insurance (although sufferers use about twice the health care dollars compared to those without RLS, mostly for medication and doctors visits) so there might be some rational for an increase in premiums.

Although some patients note improvement with some non-drug treatments, most need medication. There are no non-drug treatments that help the majority of sufferers.

Sent: Thursday, December 20, 2007 1:04 PM
Subject: Requip and weight gain

I have had restless legs as long as I can remember, recently worsened due to end stage renal disease. I had a transplant in May of 2006 and after that time I was given Requip for my restless legs. I have gained about 40 pounds since starting the Requip ~ is this a side effect and if so are there alternatives to Requip that do not contribute to weight gain? Thanks so much, I look forward to your reply.

Cheryl C.

Although weight gain has been reported with Requip, it is usually less weight and may be in part due to water retention (or edema). You might try Mirapex and see if it is any better.

Sent: Thursday, December 20, 2007 1:49 PM
Subject: Lyrica for RLS?

Neither Requip nor Mirapex worked for me.

My family doctor referred me to a neurologist who seems well versed in the treatments you describe in your excellent website. He has started me on Lyrica (50mg twice a day for a week and then 75mg twice a day until my next visit in a month.) It seems that this drug takes some time before it begins to work. In your experience, about how long would it take to determine if a patient is responding to Lyrica and getting relief of RLS symptoms?

David E.,
Bradenton, FL

Typically, Lyrica should work within a few days (2-4). If not, the dose should be increased (on a weekly basis). We generally do not increase much above 150 mg twice daily.

Sent: Wednesday, December 19, 2007 3:50 PM
Subject: Treating RLS with Sinemet, Mirapex and tramadol?

I am 66 and have had RLS for over 20 years. Till recently I was taking Sinemet CR, one 25/100 and 1/2 Sinemet 25/100, plus Klonopin .5mg, all before bedtime, and taking 1/2 Sinemet when I get up to use the bathroom in the middle of the night. This provides decent symptom relief and sleep, and any day time occurrences I just tough through. I am unusual in that I haven't had the common problems with Sinemet. I initially took one 25/100 starting 20 years ago and now a total of two.

I've also had good luck with the Klonopin, possibly because I have a mild anxiety disorder and have taken low doses on and off again almost all my adult life, with very good results. IMO my body "needs" the Klonopin. 5 years ago I replaced the Sinemet with Mirapex, as a trial. I started low but in a year was requiring .75 mg, plus the Mirapex was unpleasant to take. It made me feel like I was coming down with the flu), so I went back to Sinemet.

Even though Sinemet has been effective and without adverse effects, I worry about its toxicity to the brain, although some experts think it is more of a problem than others. So I decided to give Mirapex another try. This time I started at 1/4th of a .25mg and increased VERY slowly and have been able to get to .25 with having the flu-like feelings. But I've only been able to drop the Sinemet dose just a tad. My plan is to continue to increase the Mirapex and see what happens.

I realize that Mirapex would be a better med for me health-wise and am happy that I can take at least .25 without feeling lousy. But I don't want to reach a dose level in a year or so higher than would be prudent. I assume the effects of Sinemet and Mirapex are additive. What do you think about my just combining the two, thereby keeping both at lower levels than if by themselves?

I do feel a little groggy when I wake up in the morning and have a little trouble getting up promptly. On those mornings when I must get up early or have a fast start I take 50mg Tramadol at bedtime (deleting the middle-of-the-night Sinemet) and I bound out of bed feeling quite alert. This might be 2 or 3 times a week. I would hate to lose this back up med--what do you think would be the max times per week I could do this without becoming tolerant to the Tramadol? (I don't want a shorter acting benzo because I believe that small amount of Klonopin in my system during the day is about right for me).

John

Klonopin does not treat RLS symptoms (for the majority of RLS patients) but rather helps RLS patients fall asleep. Tolerance and dependence may or may not occur at any time (even after 20 years on the drug) in the course of taking this drug.

You can take the Sinemet and Mirapex together but at the dose of Sinemet that you are using, augmentation is very likely to occur. You might want to try Requip (start at .25 mg and increase very slowly).

Tramadol can be taken every day without concerns about tolerance/dependence as long as the dose is reasonable (less than 4 or so per day).

Sent: Friday, December 21, 2007 3:36 AM
Subject: medication and swollen ankles

I have written to you before and appreciate all the help you have given me but since my hip replacement in Aug. my RLS has gotten much worse. I was walking all night long but it is getting better. I take 10 mg Zetia, 325mg aspirin, 100mg Cozaar and 2 20mg furosemide (swollen ankles) each morning and then I take .5 Mirapex at 2 PM,.25 Mirapex at 6PM, .5 at bedtime along with 1 mg clonazepam, 300 mg Gabapentin . Now I take 3 mg Lunesta a couple times a week in order to get some sleep.

But about 12 weeks after surgery my feet and ankles started swelling. My doctor has checked everything but can't find the reason for it, My ankles and part way up my legs and maybe all the way up my legs are swollen but especially my ankles. Do you thing my medicine may have something to do with it or do you have any suggestions? I never had this problem before surgery,

Mirapex has been associated with edema (swelling of the ankles) but it you have not changed your dose of the drug then it is much less likely to be the culprit. It is also possible that you are sitting much more after your surgery which may account for increased edema (this can be made better by propping your legs up when you sit).

Sent: Thursday, December 20, 2007 1:49 PM
Subject: Lyrica

Neither Requip nor Mirapex worked for me.

My family doctor referred me to a neurologist who seems well versed in the treatments you describe in your excellent website. He has started me on Lyrica (50mg twice a day for a week and then 75mg twice a day until my next visit in a month.) It seems that this drug takes some time before it begins to work. In your experience, about how long would it take to determine if a patient is responding to Lyrica and getting relief of RLS symptoms?

David E
Bradenton, FL

Typically, Lyrica should work within a few days (2-4). If not, the dose should be increased (on a weekly basis). We generally do not increase much above 150 mg twice daily.

I took Lyrica 50mg twice daily for a week. Then two days ago, as prescribed, I went to 75mg twice daily. On the second day of taking 75mg, I received virtually complete relief of all leg and arm symptoms without the help of any other drugs. The residual symptoms are so slight as to be almost unnoticeable. There are side effects of sleepiness and blurring of vision which I hope will diminish with time.

Needless to say, after suffering from this extreme exacerbation continually and unremittingly 24 hours a day since September, I am very happy to be without symptoms. From my experience with Lyrica , I would encourage others who are prescribed this drug not to give up because of side effects for at least a couple of weeks to give the drug a chance to work.

Lyrica may take a few days to work and often the body adapts to side effects within a short period.

Good to hear that you are doing well with this drug.

For RLS I am on 1 mg Dostinex a day while the other medications failed. I am very in doubt now whether I should continue with Wellbutrin. Could the problems be temporarily?

Side effects of medications can be very hard to predict. Typically, if the side effects have not significantly reduced after about a week or so, they are likely to persist.

Sent: Monday, December 24, 2007 3:59 AM
Subject: Pain medications for RLS patients?

What OTC medication do you recommend for arthritis pain for patients on Requip for RLS? Thank you for all your help.

Sent: Monday, December 24, 2007 11:28 PM
Subject: Requip dosage causing heart fluttering?

Since the doctor has reduced the dose of Requip from 2 mg to 1.25 I am experiencing heart fluttering. If in fact this is the cause, should I have been reducing it slowly as I increased it slowly in the beginning? I am unable to contact the doctor because of the holiday's.

Claire P.

Changes in the dose of Requip in your range should not have precipitated heart fluttering. Of course, your case may be unique in which case there are no recommendations to guide you.

Can Requip and/or Mirapex be taken as needed or do they need to be taken on a daily basis to be effective? I feel I can usually get by without medication but there are some nights when symptoms are worse. Also, it seems that whenever I take a long plane flight my symptoms worsen and I feel like I’m going to explode. It would be nice if I could just take something when my symptoms increase instead of every day.

Although they have not been marketed for as needed use, both drugs can be used in that fashion. The only problem is that they take 1-3 hours to work, so when taken at bedtime there may be a significant delay before they let you get to sleep. At bedtime, Sinemet, painkillers or a sleeping pill may work quicker and thus better.

For airplane trips (or other prolonged, planned activities such as movies), Mirapex or Requip should work great when taken 1-3 hours prior to being sedentary.

Sent: Friday, December 28, 2007 2:19 AM
Subject: Problems with Requip?

I have had RLS for years and have been taking Requip for 2 years. Now I am getting the weird dreams, amnesia, dry mouth, confusion, anxiety etc. I have tried Sinemet before and was switched to Requip because it was supposed to be safer. Is there any other medication that can be used with less side effects?

I suffer every night and my husband doesn't sleep because of my constant kicking and twitching.

First, make sure that Requip is causing these side effects. Stop the drug (with your doctor's approval) and use a painkiller (such as Vicodin) in the meantime to see if your side effects persist. If they do, then you might want to try Mirapex which is similar but may have different side effects.

If Mirapex causes problems then consider anticonvulsants (gabapentin, Lyrica) or painkillers.

Sent: Wednesday, January 02, 2008 2:56 AM
Subject: Problems with Requip?

I use vicodin too because of back problems. Probably the combination of the two are doing this., but I need them both. Is there such a thing as a RLS specialist? I tried cutting back on the Requip and still have the effects. What are the side effects of the Mirapex? I am going to a pain specialist for back injections, maybe I can off of the vicodin.

RLS specialists do exist and are most often neurologists (who usually specialize in movement disorders) or sleep specialists. However, you must check carefully, as most neurologists and sleep specialists at this point are not that knowledgeable about RLS and should not be considered as experts in this disease.

Sent: Saturday, December 29, 2007 8:41 PM
Subject: Requip withdrawal

I am currently on Requip 1.5 mg per day and my symptoms have increased 10 times worse then before I started. I want to go off the medication but need to know if there are withdrawal symptoms associated with abrupt withdrawal. Do you need to taper your dose before stopping? Thank you.

Lorelei S.

You can stop abruptly but your symptoms may get worse. You should have potent painkillers (Vicodin, oxycodone, etc.) to treat your RLS symptoms for a week or so until your RLS gets back to normal.

Sent: Monday, December 31, 2007 9:40 AM
Subject: Restless arms?

I have restless arm syndrome, have you heard of this, not so much legs, and how it is treated. It is specifically in my forearms....thanks.

Proden

RLS can spread to the arms and other body parts as the disease worsens. It always starts in the legs then spreads to the other body parts. Although most patients notice that the legs are worse than the other body parts, some have their symptoms worse in their other body parts (such as the arms) than their legs.

Sent: Monday, December 31, 2007 6:22 PM
Subject: Using Requip?

I just found your website and hope that you can help me. I have a pituitary tumor that secretes prolactin. For 6 yrs, I have taken Dostinex, (a total of 10, 0.5 mg tablets a month). In 2006, I had to have the tumor removed. I was taken off all medications prior to surgery. That's when I first started having RLS symptoms.

They have progressively gotten worse. I am currently taking 1mg of Requip at night. The RLS symptoms are occurring earlier in the evenings, now about 8pm. Therefore, I have to take the Requip earlier. I get extreme nausea when taking the medication and frequently vomit. Retiring for the night seems to help the nausea at times, but sometimes that is not an option.

I have read that prolactin suppress dopamine and that the lack of dopamine causes RLS. I now take a total of 2, 0.5 mg tablets of Dostinex to help suppress the prolactin. Increasing the Dostinex isn't an option due to a risk of heart valve disease. Can you suggest anything I can do to counteract the nausea? Someone suggested taking 200 mg of vitamin B-6 could help, but it doesn't. I would greatly appreciate any information.

Debbie

Prolactin does not suppress dopamine but rather dopamine agonists (like Requip and Dostinex) suppress prolactin.

Dostinex is used in Europe to treat RLS which is does very well. The heart valve problems associated with Dostinex are not dose related and can occur with the lower doses as readily as with higher doses.

Anti-nausea medications generally worsen RLS but the newer (and more expensive ones) such as Zofran and Kytril work very well. You may want to consider Mirapex or change to other classes of RLS medication (such as painkillers or anticonvulsants).