Patient letters on RLS symptoms and remedies- Page 73

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Sent: Thursday, March 15, 2007 9:39 AM
Subject: Requip in your system?

I need to know how long Requip stays in your system?

It has a half-life of 6 hours which means that every 6 hours 1/2 of the drug is eliminated. By 30 hours (5 half-lives), it is expected that there are no real significant traces of the drug left in your body. However, the clinical effect is usually gone within 8-12 hours.

Sent: Friday, March 16, 2007 12:45 AM
Subject: Neurontin dosing for PLM?

Have been taking one dose of 900 mg Neurontin for nightly PLM with relative success. However, have found the need to keep raising the dose to achieve relief. Is there a rule for the maximum amount of Neurontin which should or can be taken before discontinuing the medication.

Also, as I typically do not have symptoms during the day, will taking Neurontin during the day (multiple dosing) cause any type of rebound/augmentation with this drug. Is there a maximum single dose which can be taken at one time?

Whether or not to treat PLM is still a very controversial subject. The other question in your case, is how are you monitoring the need to increase the Neurontin as you can clearly not measure the amount of PLM that occurs while you are asleep? You may be trying to adjust the dose based upon how you feel in the morning, but that can be very misleading (as many other factors can affect that issue). Are you confusing PLM with RLS?

The maximum dose for Neurontin is 900-1200 mg up to 3 times per day, however very few patients need or tolerate these high doses. There is no concern with augmentation with Neurontin.

Sent: Friday, March 16, 2007 1:25 AM
Subject: Sinemet withdrawal?

I am well into Sinemet augmentation, and I am shifting to Requip. I have two questions to which I would like to get quick answers, as my "RLS expert physician" stares blankly at me when I ask him:

1) Should I go off Sinemet and wait for the augmentation to die down before starting Requip?

2) How long, on average, does it it take for the augmentation to abate? I know that nobody's average but I need some feel for what I might expect.

Treatment of Sinemet augmentation can be done in several ways. Some experts like to withdraw the Sinemet abruptly then treat the worsening RLS symptoms with narcotics. The withdrawal period should last about 1-3 weeks at which time the RLS should be back to the levels that were present before the Sinemet was started.

The alternative method of starting the increase the Requip as the Sinemet is slowly tapered (or even abruptly tapered) also works. Narcotics also have to be used on an as needed basis to treat some of the withdrawal RLS symptoms until the Requip fully kicks in. The only difficulty with this technique is that a higher dose of Requip (than may be necessary once the augmentation issue is resolved) may be needed so care must be taken to see if a lower dose may suffice after 2-3 weeks.

Sent: Saturday, March 17, 2007 7:02 PM
Subject: PLMD treatment?

My name is Kay and I'm a 53 year old peri-menopausal female. I've had PLMD, then RLS for 5-7 years, I finally got a ferritin test and found I was anemic, iron level 13, almost certainly from heavy bleeding, which is still ongoing. Curiously, while I was iron deficient, my hematocrit and hemoglobin were normal.

Iron therapy for the past 9 months has brought my ferritin to 65 and my RLS symptoms have abated, but I wake up every night after 3-4 hours sleep and continue to wake up regularly throughout the night. I believe it is the PLMD, but I'm wondering if the PLMD might not be a deficiency also. Magnesium citrate, All-calm specifically, worked quite well for me for a few months, before I started taking iron.

Generally speaking, the same things that help RLS help PLM. You cannot be sure that the PLM are waking you up. There are many other reasons for that happening. Without a sleep study, it is impossible to know what is causing you to wake up.

Magnesium and All-calm have never been proven to be helpful for RLS or PLMD. If you received benefit from them, then you may have been lucky or coincidently, your RLS/PLMD may have spontaneously improved.

Sent: Sunday, March 18, 2007 7:18 PM
Subject: Severe RLS from augmentation?

I have suffered from RLS for most of my life, I was formally diagnosed as having it by a neurologist who prescribed Sinemet, this was like a miracle, until "augmentation" which was unbelievably painful. My own doctor then put me on pergolide (Permax) which worked very well for about ten years then once again augmentation.

I then tried Requip which gave me such terrible nightmare I was afraid to go sleep! Mirapex was the next and it worked fairly well, for awhile then augmentation again. I went off everything for two weeks and suffered terribly, I started Mirapex again taking .50mgms at bedtime, I also take 2 Tylenol #3 and 2 Restoril. This will give me about 4 hours of sleep then I am up for the rest of the night.

I also have RLS during the day and it is just agony in the evening. My doctor doesn't know what to do, and I am at the end of my tether. It's like I am living in hell.

Mary in Canada

Clearly, you are having problems with augmentation and severe RLS. If you are to use dopamine agonists like Mirapex, you may be able to do so only at very small doses.

The first thing that you need to do is get off the Mirapex for 3-4 weeks in order to reset your dopamine receptors. After your hiatus off the drug, you may be able to restart it at a low dose (no more than .125 or .25 mg per day) and hopefully not experience any augmentation (we feel that the augmentation may be somewhat dose related).

When off the Mirapex, you will need a stronger narcotic (Percocet is a good choice) to treat the short period of worsening RLS symptoms. The addition of an anticonvulsant such as Neurontin may also be helpful. With proper treatment, you should be able to relieve most all of your RLS symptoms.

Sent: Tuesday, March 20, 2007 10:39 AM
Subject: RLS Drug Holiday?

After tracking my RLS for approximately 4 years I have learned I must take a drug holiday every 8 weeks. The augmentation becomes severe at this point. After about 6 days of drug holiday, I can resume Mirapex and expect normal good results.

I have tried using other dopamine agonists, Clonazepam, or Vicodin during these holidays with no success.

For the last drug holiday I used 5 mg of methadone three times a day. It held the RLS in check but I was severely nauseated the entire time. I used Domperidone with little success.

Do you have any recommendations as to the dosage or an alternate drug I could try? Also is there a better anti nausea drug to use?

Bettye H.

Since Vicodin did not help very much, you clearly need a stronger narcotic. It is likely that the stronger narcotics will also cause nausea as this is a common side effect and may be dose related. There is a chance that another potent narcotic (such as oxycodone) may not cause this problem, but only trial and error would be able to confirm this issue.

There are much better anti-nausea drugs available here in the USA. Kytril and Zofran are very potent anti-nausea drugs (they are used to prevent the severe nausea and vomiting that occurs with chemotherapy). The only downside is that they can be very expensive (if not covered by insurance).

Sent: Tuesday, March 20, 2007 11:48 PM
Subject: RLS and Mirapex?

I am a 35 year old male and I have been taking Mirapex (.25mg) for several years for my RLS. Recently I was thinking that it wasn't helping much and I thought I was having odd side-effects and decided to stop taking it. After about 1 week I couldn't stand it and started taking it again.

With the Mirapex, I am able to get to sleep at night, but it seems that no matter how much sleep I get I wake up exhausted. Without the Mirapex, I struggled to get to sleep and started resisting going to bed, but even though I was only getting about 3 hours of sleep I was waking up much fresher.

My RLS is not classic in that is not really my legs, but my feet. The urge to move is accompanied by a feeling of very hot feet (even when they are cold to the touch). I have to sleep with my feet outside of the covers. Occasionally they are actually hot, but mostly cold. I will sometimes go stand on the concrete porch barefoot in the winter before I go to bed to help me get to sleep.

The side-effects I have been feeling include: exhaustion, poor memory, loss of clarity in my thinking, inability to concentrate, a feeling of depression (although I can't quite describe it, it is more physical than emotional), weight gain (could just be lack of exercise from the exhaustion), strange pains throughout my body (chest pain, leg pain, etc).

Unfortunately I have had a hard time getting people to take my complaints seriously.

The questions I have are as follows:
1) Is what I have actually RLS since it is in my feet (and if not medicated my hands too)?
2) Is there a better treatment available for what I am experiencing?
3) Are my side-effects common or do I have something else going on?

Although your RLS symptoms are not completely "classic", they are not that rare. The urge to move is what is essential for the diagnosis and what all RLS patients need have in common. The foot is not the most frequent place for RLS to occur, but we see lots of people with symptoms in their feet (and legs) and a few with symptoms only in their feet.

Mirapex can cause sleepiness and fatigue, but for most patients, that problem is usually gone by the next morning (although some do report very similar experiences to yours). Your daytime sleepiness/fatigue may be a side effect of the Mirapex or due to something else. To see whether the Mirapex is causing the problem, simply stop the medication and have your doctor prescribe Vicodin (or another narcotic) at bedtime. This should relieve your RLS and let you sleep. If you sleep well and are not fatigued, then the Mirapex is the culprit.

You may do better with a daily narcotic treatment (which is very safe if kept at low dose).

Sent: Wednesday, March 21, 2007 7:33 PM
Subject: RLS worse on Requip?

My mother has RLS and started taking Requip for 5 months. Normally, she would take the pill about 9:00 so she could go to sleep at 10. it worked fine until recently the RLS systems are beginning around 6:00 pm or 7:00 pm when she sits down to read the newspaper.

What should she do? stop taking the Requip since it is causing RLS to come on earlier in the evening or take around 5:00 pm before symptoms start at 6:00 pm?

Your mother is likely experiencing augmentation from the Requip. If the symptoms are mild, she can ask her doctor about taking the Requip at 5 pm (just as you suggested). If the Requip does not last long enough to take care of middle of the night RLS symptoms, then an additional dose (often smaller) may be needed just before bedtime.

However, if the symptoms keep occurring earlier and earlier and become more intense, then the Requip should be stopped and changed to another class of RLS medication (Neurontin or painkiller).

I think I have had RLS since a teenager. On the beach I would get restless. It went away, then at 39 years old it came back. Legs & arms. Stayed a few years on & off. I still get it for a spell & then it goes away for a while & comes again and stays for a while. I notice when I eat out I get it.

When I eat Chinese food I get it big time. So, I stopped eating foods with tons of salt & sodium. I get it when I have a pedicure and my feet & lower legs are in the whirlpool, I feel very jumpy. I seem to get anxious when I have it.

I am not on medications. Just drink a lot of water & trying to eat natural foods that I cook at home. I walk 3 miles every day. Feels great. I am 63.

It sounds as if you have mild RLS that only appears with prolonged rest. If you are doing well (and it sounds like you are), then no further therapy is necessary. Many RLS sufferers notice that diet may affect their symptoms.

Sent: Friday, March 23, 2007 10:12 AM
Subject: Low thyroid and RLS?

I know that there is a relationship between low ferritin and RLS, but is there one between RLS, low ferritin (11) and low thyroid?

CMA

Sent: Friday, March 23, 2007 1:10 PM
Subject: ABC News article on RLS

What are your thoughts on this recent article stating that Requip and Mirapex can make symptoms worse? I thought these two drugs would not cause augmentation??

“In a recent article in the Journal of General Internal Medicine, neurologists at the University of Rochester Medical Center warned that drugs like Requip and a similar drug Mirapex (pramipexole) can actually make the symptoms worse. These drugs — so-called dopamine agonists — have an "augmentation" effect — that is, they can heighten the symptoms they are ostensibly treating. They act on dopamine receptors in the brain that help coordinate smooth movement. “

Concerned,
Patrick

With augmentation, the RLS symptoms occur earlier in the day, may get more intense, may spread to other body parts and may decrease the interval that one can sit before symptoms occur. Although augmentation is a significant concern for anyone taking dopamine agonists (Mirapex and Requip), it generally is not that common a problem or that severe. The exact percentage that significant augmentation occurs in those who take dopamine agonists is not really known but many of us feel that it is still a small minority.

Dr. Rye and I commented on this article for the RLS Foundation. This article somewhat exaggerated the concerns about augmentation with dopamine agonists. As long as patients and their doctors are aware of this issue, problems with augmentation can be easily dealt with and avoid significant suffering with those who use these drugs.

Augmentation is a much more serious problem with Sinemet.

Sent: Sunday, March 25, 2007 8:50 PM
Subject: Re: ABC News article on RLS

Thank you so much for responding. Does Mirapex also cause drowsiness as Requip does? How long should I continue with Requip if it doesn't relieve my symptoms?

As Mirapex and Requip are both dopamine agonists and act upon the same receptors, they tend to cause similar side effects (such as drowsiness). However, it is not unusual for one drug to be better tolerated (with less side effects) than the other in any given person. Therefore, if you are having drowsiness with Requip, you may have a small chance of doing better with Mirapex.

Once the correct dose (for any given person) is reached, the Requip should work. Some patients who need small doses such as .25 mg may even notice complete relief on the first night (and most showed some improvement within the first 2 days of treatment). Most patients need doses under 1-2 mg. Therefore, if you are at that dose and not getting relief, then you may want to consider other treatment.

Sent: Wednesday, April 25, 2007 8:25 PM
Subject: Re: ABC News article on RLS

My doctor prescribed me Gabapentin up to 3 times a day. I have been taking for a little over a week once in the morning. I took it twice today for the first time. I have not noticed an improvement. Is it supposed to work immediately? If so then it is apparently not working so I don't want to continue with it.

My doctor also says the aching in my legs is not connected to the occasional tingling in my feet and legs. But I don't see how it is not connected?? We did an MRI of my lower back and there were some minor slipped disk but he doesn't think it is causing my leg aching.

I also took Requip and it didn't improve anything, so I am wondering if this is RLS. I have read that some people experience aching with RLS so I don't know why my doctor thinks the aching is not RLS.

Gabapentin is often must be used in fairly high doses (6-900 mg three times daily) before adequate relief is obtained. This often limits its use due to side effects.

If the aching symptoms are due to RLS then they should go away with movement and come on only with rest. If they are associated with RLS in any other way (such as peripheral neuropathy) then they are treated just as a peripheral neuropathy (no special treatment if they are not RLS-like).

Sent: Friday, March 23, 2007 10:06 PM
Subject: RLS improved with treatment of electrolyte imbalance?

Hi. I have had RLS since childhood. I am now 49 yrs old and last summer I had to have surgery. With the blood work I had to have done I was told I had an electrolyte imbalance - low sodium and low potassium. I have now learned how to keep my electrolytes in balance through diet and my RLS is SO much better!

So far, there is no known link between electrolytes and RLS. However, it is certainly possible that they may affect RLS symptoms.

I'm recovering from a total abdominal hysterectomy, done March 19,07. My main drug for pain was a morphine pump which was fine for the first 2 days post-op. When I decided to slow down on the morphine and switch to T 3's I came down with terrible nausea that was treated with Zofran and Maxeran.

I had done my research prior to surgery and knew that these two were the better ones for RLS. Alas, my knowledge seemed for naught. I came down with not only awful RLS but also spasms that didn't do my incision any good! Vomiting bile, unable to lie still and in pain. Had there been a button to end it all, I would have pushed it for sure.

I asked for Mirapex, my main drug for RLS in injection form since I could not take anything by mouth and my IV had been removed already. I was told it was not available (there). I had to endure for 24 h., then I refused all pain and nausea medication. I was able to take my Mirapex and gabapentin orally and slowly got better.

What could have been done differently i.e. different narcotic, anti nausea medication, injectable drug for RLS, anything? Since I also have Crohn's disease, my next surgery is on the horizon somewhere.

P.S. I informed all the doctors of my RLS. RLS may not be a serious disease but it certainly augments other ailments and it seems to hit me the hardest when rest and sleep are essential for dealing with more serious diseases. Feel free to publish my story and I would greatly appreciate hearing from anyone with a similar experience.

Generally, Zofran is a great drug for relieving nausea in RLS patients. It can be given intravenously (as well as orally) and is potent enough to relieve nausea in patients undergoing chemotherapy (its primary indication). Other similar potent (and RLS safe) anti-nausea medication include Kytril and Anzemet.

It is quite likely that the additional drug that you were given, Maxeran (metoclopramide, called Reglan here in the USA) is a very common drug to worsen RLS. Despite your research (which may have been hindered by the different name of this drug outside the USA), this drug may have increased your RLS symptoms.

There is an injectable dopamine agonist called Aopkyn (apomorphine) that can be used to treat RLS (although only a few case reports have been published so far). I am not sure that this is available in Canada, but if so, it would have taken care of your problem.

Sent: Sunday, March 25, 2007 3:13 PM
Subject: Leg and foot cramps?

I am a 60 year old female, diabetic with RLS. I have been on dialysis for almost a year and it was going well at first. I go to dialysis 3 days/wk originally for 4 hours each time but it has been cut to 3 hrs 15 min. I was having a bad problem sitting for 4 hours with the RLS I now take Requip for the RLS and it has helped some but not totally. But now worse are the leg cramps.

For the 2 months during the last 1/2 hr to 1 hr of treatment, I feet and calves have started cramping so severely that I can hardly stand the pain and it usually results in the dialysis treatment being cut short by 10-15 minutes. I also get the same leg cramps at night when I am trying to sleep. Usually if I get up and walk they will go away but frequently come back after I lay back down.

I was taking quinine for the leg cramps, which seemed to be helping, until about a week ago and the doctor said to stop taking the quinine because new medical studies have indicated it can cause fatal arrhythmia (heart rhythm irregularities). The Requip helps with the RLS but does nothing for the leg cramps.

My potassium is NOT low in fact my last blood test it was 6.0 which is high. Do you have any suggestions I can talk to my Nephrologist about?

RLS has been associated with kidney failure and is very common (possibly over 50%) in dialysis patients. It can be treated very well (as in your case) with the dopamine agonists, Requip and Mirapex.

Leg cramps are not associated with RLS and are a completely separate problem. They were well treated with quinine but the FDA no longer approves the drug for this use (as you have noted) due to potential problems with arrhythmia (heart rhythm irregularities) and thrombocytopenia (low blood platelets which can case bleeding problems). Unfortunately, there are no current substitutes for quinine that are effective for leg cramps.

Some doctors are still prescribing this drug for leg cramps. However, this should only be done on a case by case basis when the benefits (treating leg cramps that are bad enough to cause significant disability) outweigh the potential risks.

Sent: Tuesday, March 27, 2007 9:35 AM
Subject: RLS in a one year old?

I was referred to you by someone on the RLS site. I think my year old may have RLS. Since he was born he has never slept good . The doctor said he had colic than acid reflux. The acid reflux medicine never helped but she only gave him 2 different ones and every time I mentioned Nexium she said sell try this one. (Prevacid and Zantac)

She then sent us to Ear, Throat and Nose doctor and nothing then she sent us to an allergist they took blood and they found that he isn't allergic to a thing. They wouldn't do a sleep study because they said his sleep disturbance wasn't enough. Last but not least about a month ago our son was sleeping in his car seat and his legs just started moving uncontrollably for about 10 seconds and it kept happening for about 5 minutes. Well now that we noticed his legs moving it happens all the time.

It is extremely difficult (to almost impossible) to diagnose RLS in a one year old. Normally, the diagnosis is not possible until about age 3 when the child can talk well enough to describe some of the symptoms.

You may suspect that RLS is a problem but no doctor would be able to diagnose it yet and would thus certainly not treat it. If there is a family history of RLS, I would be more suspicious. However, if there is no family history, then the odd markedly decrease that your son has RLS.

Right now, all you should do in observe and document what is happening for later reference.

Sent: Tuesday, March 27, 2007 4:08 PM
Subject: RLS and anti-seizure medications?

I have been experimenting with medications for RLS that became unbearable last fall. I am currently taking gabapentin but find what it is doing to my head during the day is unacceptable. my head feels like a water balloon and the world looks strange. I have found though that taking vicodin with no more than 300mg gabapentin before going to bed works pretty well. but my primary care physician seems determined to stop the narcotic.

I am wondering if there is another anti-seizure medication that won't cause these side effects.

Your treatment for your RLS is very reasonable. The new drug Lyrica tends to work as well (or even better) than Neurontin (gabapentin) with less sedation.

I read your comments on page 70 about Adderall possibly helping RLS control by increasing dopamine. I am a 56 yr old WM and am soon going to have testing for ADD. I requested and received a 5 mg per day dosage of Adderall last week and it is helping me to avoid napping during the day. This in an indirect way helps control my RLS, of course.

I take Requip .5 mg. One at lunch and dinner. Four at bedtime. Two when I wake up at midnight. I sleep fairly well. I cannot take as many pills during the day because I would not function well and so the RLS is not as well controlled during the day. I do take 5 mg Percocet. I take one half pill at lunch and midnight. One quarter pill at 6 am and pm. This helps with the daytime RLS and also helps me sleep a little because I would have a slight withdrawal at night if I didn't take it then.

I want enjoy life to the fullest. I enjoy reading poetry. I enjoy woodworking. But I was having trouble with heavy reading before starting the Adderall. After fifteen minutes I felt a strong urge to sleep. And it wasn't because of the Percocet because I tried not taking it for nine months. All that did was make me more uncomfortable on a daily basis.

So I think Adderall can be a positive addition to my treatment whether or not it turns out I have ADD. Does this make sense? I am thinking 5, 10 or possibly even 15 mg per day using 5 mg pills so I can figure out what works best. I don't think time release would be a better option.

Wellbutrin worked well for awhile. I have had dysthymia most of my life. But it is time to get off that because I have lost my sex drive. And if you lose you sex drive on Wellbutrin it is unlikely another antidepressant will help, they tell me.

It would seem to me that Adderall would be a good addition in my case whether I have ADD or not. I think I do but if it turns out the other way I am thinking maybe go back and forth with Adderall and Wellbutrin six months each. How does that sound to you?

Adderall may help RLS by increasing dopamine levels but it may also have another positive effect. RLS tends to occur with both physical and mental rest. Sedating drugs (such as the sedating antihistamines) typically worsen RLS. Adderall, by keeping you more alert and awake may be preventing RLS symptoms.

If the Adderall is helping, I would wonder why you would want to discontinue it every 6 months? It might be better to just stay on a low dose (as you have indicated) and continue the drug indefinitely.

Wellbutrin generally does not interfere with one's sex drive, however anything is possible with antidepressants. Although it is true that the other antidepressants tend to cause a higher incidence of sexual dysfunction, any individual may have a different response (better or worse). My major concern about the other antidepressants is that they often worsen RLS.

Sent: Wednesday, March 28, 2007 8:17 AM
Subject: RLS and pesticides

In 1998 someone asked about the potential connection between the exposure to pesticides and RLS. I was wondering whether any research has been done to get an answer to this question. I was exposed to a misapplication of a pesticide and have suffered these symptoms since. I never had anything close to this type of reaction prior to the pesticide misapplication. Mine was a chronic, not acute, exposure.

I, too, have to eat only organic food. Added to my problem is tinnitus (ringing in the ears) which also becomes unbearable if I am exposed to even small amounts of pesticides now.

I understand RLS of some sort existed in the past, and this may have been due to exposure to some other types of neurotoxins. It is just so prevalent today and certainly has increased, so much so that medications for it are regularly advertised on TV. Also, the meds attempt to regulate cholinesterase, and the class of pesticides that has been used for the past 50 years are cholinesterase inhibitors.

Would appreciate any information you might have.

Joy M.

.There is no research available on RLS and pesticides. Although RLS appears to be more prevalent today, this is almost assuredly due to increased awareness (due to the RLS Foundation, 2 drugs now being FDA approved and advertising, educational campaigns for doctors, etc.) rather than a true increase in the disorder.

Dr. Ekbom (a Swedish neurologist) who first described the syndrome in 1944, found many cases without looking too hard. Dr. Willis, in 1672, also wrote a paper describing the syndrome and even added a treatment (similar to what we use today).

The medications used today to not affect cholinesterase activity in any way, so I doubt that there is any link there.

Sent: Wednesday, March 28, 2007 5:34 PM
Subject: Keppra for RLS?

I am a 67 year old female. The last 3 years have been a roller coaster of questions, doctors, tests, sleepless nights and pain in both legs, upset family. I have been diagnosed with sleep apnea and RLS and neuropathy . I have been on several medications. but Requip helped the most.

However, I have the misfortune on have the side affect of facial tic. I screw my mouth up all the time. My family has not been too happy with some of the medication that I have taken and really fuss about my mouth movements. I asked my doctor to change my medication. and she prescribed Keppra. I looked it up on the Internet and find it is for bipolar disease.

Keppra (levetiracetam) may be used to treat bipolar disorder but it is actually an anti-seizure drug. Several of the anti-seizure drugs (especially Neurontin) have been studied and used for treating RLS and peripheral neuropathy. There are a few case reports of success with Keppra for treating RLS (although clinical experience with this drug for RLS is still somewhat limited).

Sent: Saturday, March 31, 2007 9:01 PM
Subject: Need help for severe RLS!

My RLS is so bad I am feeling suicidal, I am on 4 mg of Requip (not helping) with 3 hours of agony a night, where the leg spasms are so bad I am in tears. I have no pain just the urge to move being so great I cannot function. Doctors are sending me for vitamin D, thyroid, CBC and my doctor doesn't seem in a hurry to help.

I cannot take it anymore and am at the end of my rope. I am an Effexor and Ativan but I need those so no use saying they are affecting the RLS.... help??? Is there any at all or do I give up. My days are spent worrying about my nights and I am a wreck as a human being. I have lousy insurance and have begged doctors for help but it's all about the money.

As your dose of Requip is very high, it is unlikely that this medication is doing much for you at this point and increasing it would certainly not be helpful. The additional tests that your doctor is running have no impact on your RLS. The only test that may yield helpful information is a serum ferritin level, which if low, may indicate that iron therapy could be beneficial.

If you need the Effexor, then you are correct that stopping it (even though it may be worsening your RLS) is a bad idea. If you have not yet tried Wellbutrin, that may be an option for the future.

It is very likely that treatment with one of the painkillers (tramadol or one of the narcotics) would bring you instant relief and improve the quality of your life. It may also be helpful to add an anticonvulsant (like Neurontin or Lyrica) which may also help your RLS and keep the dose of painkillers at a lower level.

With proper treatment, almost every RLS sufferer can achieve very acceptable relief of symptoms. If your current doctor cannot help you, get a referral to a specialist or seek on out yourself.

Sent: Monday, April 02, 2007 12:03 PM
Subject: RLS sufferer

I have PLMD and RLS. After eight years on Klonopin and 2 years on Dalmane, I have almost completed the program to stop these medications. I have two more 15 mg Dalmane capsules to take. I have been weaned from Klonopin for about two months.

I had three really great nights of sleep last week, and thought I was home free. I was ready to stop Mirapex - .125 mg.- 3 times a day. (Now I have read that it should all be taken in one dose in the evening for RLS.)

Well, I got my rude awakening. I have spent five nights not sleeping, and am getting tearful and anxious. I'm guessing it's rebound insomnia. I feel a little leg jerking, too. I definitely don't want to go back on either medication, and want to stop Mirapex soon. I believe it has caused blurry vision, and I have developed a persistent non-productive cough.

I want to be drug free and live my life as I was once knew it. I, too, wish I could meet up with the doctor who started the Klonopin. I never knew....... I want to try natural methods, from checking iron levels, to investigating B-12, either orally or by injection. At worst, a non-habit forming medication like Lunesta or Rozerem.

These are the things I want to talk to my (new) doctor about. And, I would like to be armed with some information when I see him.

My questions are these:

1. What can I do to get through this "rebound insomnia" stage, with intermittent nausea during the day? How long will it last?

2. How can I start the process of weaning from Mirapex - which I intend to do as soon as this "rebound insomnia" is settled?

Denise

Ambien, Lunesta or Sonata (whichever one works best for you) can be used to treat your insomnia problem. As you have pointed out, they all are fine for long term use as they are not habit forming. If necessary, they can be combined with Rozerem.

Mirapex is approved for once a day use, 1-3 hours before bedtime. However, we do prescribe the drug up to 2-3 times per day for those who have daytime RLS. Generally, this drug is taken 1-2 hours before the onset of symptoms, up to 3 times per day. If you do not have daytime RLS symptoms, then there is really no reason to take anything but the nighttime dose (and if that is the case, it does not make any sense why you were given more than one dose).

As far as weaning completely off the Mirapex, that would be easy if you did not have RLS and therefore did not need it the first place. If your RLS symptoms are bothersome, they will certainly return when your discontinue Mirapex. So, if you do not replace the Mirapex with another drug that treats RLS, it is quite likely that you will be plagued with RLS symptoms again.

Sent: Tuesday, April 03, 2007 12:41 AM
Subject: Re: RLS sufferer

As you can see, I'm still awake at 4:00. I'm hoping that the effects of Klonopin and Dalmane are gone soon. Does rebound insomnia last forever?

I've been off Klonopin for two months, and started weaning form Dalmane about 5 weeks ago. I finished up today. Tonight I cannot sleep, and my legs are jerking more than ever. I am so restless I could scream!

I'm thinking about taking my three doses of .125 mg. of Mirapex all around 9 in the evening. I'll start tomorrow and keep you informed.

Denise

Dalmane has a very long 1/2 life (up to 100 hours) so it can take several days to get out of your system. It may not be rebound insomnia but just simple persistent insomnia (from the RLS or PLMD) that is preventing you from sleeping.

I would not recommend taking the 3 Mirapex together at first. Try 2 of them for 5 days then if necessary, you can go up to 3 of them together (but do speak to your doctor before doing any of this).

Sent: Tuesday, April 03, 2007 10:45 AM
Subject: RLS

Can you imagine any connection with the onset of RLS/PLMD after being in auto accident where I was hit from behind by a truck? Is there something about that type of accident that could trigger this problem? I never had the symptoms before that accident 10 years ago.

Just curious........ and hoping to shed some light on this tiresome (no pun intended) problem.

Denise

It is actually quite common for people to note that their RLS started or worsened with trauma (including surgery). This has not ever been studied and some specialists are skeptical that any relationship actually exists, but it does seem to happen quite a lot (for a coincidence).

Sent: Thursday, April 05, 2007 3:10 AM
Subject: RLS/PLMD

While on Klonopin and Dalmane, I also took Mirapex .125 mg. 3x a day for the RLS/PLMD. Everything was fine, but I wanted to get off of the Klonopin and Dalmane. Maybe I should have left it alone, but I hated taking those benzodiazepines. I had read how difficult it was to wean off, but I was fine until I took the last dose. My doctor said I would be fine, since I WANTED to be off of those meds.

After about a week, I was a total insomniac. I asked my doctor if I could take all three doses of Mirapex at once since I was having PLMD movements again too. He agreed and prescribed Rozerem for the sleep problem.

Now I am at my wits end, even though I started this new regimen with a very positive outlook.

I am still not sleeping, and the PLMD is horrible. I'm starting to think that I will never sleep again, and I am totally worn out. I hate to keep bothering my doctor, but I don't know what to do You seem to see the whole picture and offer good suggestions. I am getting anxious, angry, nauseous and teary from lack of sleep.

Can this problem be from taking too high, or too low, of a dose of Mirapex? II was so sure that I would sleep on the Rozerem. But my nights are the same - sleepless and PLMD so bad that I just get up and stay up.

Can you shed some light?

Denise

Mirapex can cause either sleepiness (more common) or insomnia. You may have caused some insomnia by taking a larger dose of the drug but as you made many changes, it is obviously hard to know if the Mirapex is the culprit.

It is more likely that you are having rebound insomnia from getting off the Klonopin. The drug stays in your body for several days, so the insomnia can be delayed (as in your case). The solution for now is to take Ambien or Lunesta to help you sleep. They work more similarly to Klonopin (but are much safer, even for long term use), so they should work.

Rozerem works better for chronic insomnia patients who need to re-synchronize their circadian clocks to the correct sleep cycle.

Sent: Tuesday, April 03, 2007 4:10 PM
Subject: Ferritin Iron Level

My doctor had the lab to do a ferritin iron level test on me at my request. it came back 36. He suggested I take iron each day. Is it low enough to take iron medication. This is very hard on my stomach. My doctor doesn't know very much about RLS but he is willing to try anything that will not harm my health.

I have severe RLS and at the present taking Lyrica and Vicodin . I have also added the B vitamins which seem to make me feel better. I really don't get but 3 or 4 hours sleep a night.

The goal is to get the serum ferritin to at least 50 (and higher than that may likely be helpful). As you have already found out, increasing your blood's iron level by taking oral iron can be tough on the stomach. If this is the case, then I would not push the iron therapy. Most need 2-3 iron pills per day to get their iron levels to increase.

Sent: Tuesday, April 03, 2007 8:22 PM
Subject: Newly diagnosed PLMD

Hello. I've recently been diagnosed with PLMD and started taking the generic version of Sinemet. What a huge improvement this has made in my life! I just discovered your website and would like to join in some of the discussions and read more about others' experiences. Please let me know how to join you.

Dollie M.

Be careful with Sinemet, it may work well at first but worsen the problem later. Mirapex or Requip (more expensive and no generic available) are much better in the long run.

Sent: Wednesday, April 04, 2007 4:35 PM
Subject: Re: Newly diagnosed PLMD

I'm concerned, though, about your comments about Sinemet. What do you mean "it ... may worsen the problem later." How can I tell? What will it do?

Also, isn't Requip strictly for RLS? I'm one of those few people who really does NOT have RLS; only PLMD. I'm also concerned that Requip often causes daytime sleepiness, which is what started this long process of discovering that I'm not narcoleptic; I just don't get quality sleep because of the PLMD.

Dollie M.

The treatment of PLMD is very controversial. In fact, some RLS/sleep specialists do not even believe that PLM can cause enough disturbance of sleep to result in daytime problems and suggest that it should NEVER be treated.

There are no official PLMD drugs but most all the drugs that help RLS, help PLMD. Sinemet was first used to treat RLS then after became a PLMD drug. We are very careful when using Sinemet on a daily basis (it is fine on an intermittent basis) as it causes augmentation (worsening of RLS) and may actually bring out RLS in a PLMD patient. Augmentation may still occur with the dopamine agonists (Requip and Mirapex), but it occurs much less commonly and generally not as severe.

Daytime sleepiness from Requip or Mirapex is not that common when it is taken at bedtime and even when it dose occur, it is usually very mild.

Sent: Thursday, April 05, 2007 6:38 AM
Subject: Treating PLM

I've already had difficulty getting my (former) neurologist to understand that I have PLMD, but no other symptoms of RLS, so I appreciate you being so candid to admit that some "sleep specialists do not even believe that PLM can cause enough disturbance of sleep to result in daytime problems . . . "

I took 400 mg of Provigil every day for over a year to help me stay awake during the day and not crash into other cars. Now that a "sleep specialist" (self proclaimed; he's not accredited) has insisted that I don't have narcolepsy and that PLMD is the problem, I take Sinemet and get such good sleep (at least the first 3-4 hours) that I'm awake without any Provigil, and happily saving hundreds of dollars every month! I awaken about 3 or 4 a.m. now, however, and usually can't go back to sleep. I don't know if this is merely because of the short half-life of Sinemet.

With the rebound/augmentation concerns with Sinemet, I thought I would ask my "sleep specialist" about Pergolide (Permax). I'm very concerned about the daytime sleepiness that Requip and Mirapex sometimes cause. I'm terrified of doing anything that causes such horrible daytime sleepiness to return.

It is hard to fully comment on your PLM problem without seeing your sleep study and other data (obviously too complex for this website's Q&A).

However, Mirapex and Requip do have longer half-lives than Sinemet and if PLM are causing you not to sleep, then they would work much better.

Permax (which we used a lot of in the old days before Mirapex and Requip) has similar side effects to Mirapex and Requip, so daytime sleepiness would be at least an equal concern. However, we no longer use Permax as its common side effects are worse (more nausea and dizziness) and it just got pulled off the market due to problems with scarring heart valves.

I think that you are overly concerned about the sleepiness problem with Mirapex and Requip. I use these drugs extensively and have found only a few problems with daytime sleepiness. You really might want to try it and see if any of your concerns materialize.

Sent: Thursday, April 05, 2007 8:12 AM
Subject: Mother with RLS(?)

My mother,76, was diagnosed with RLS ... her chief complaint being constantly moving feet, not her legs. The onset of this was approx a year ago. A year and a half ago she had a kidney removed and has been on dialysis three time per week since. She has tried Requip and Carbo/Levo (Sinemet) with no success.

She takes a sleeping pill at night and has no trouble sleeping but during the day her feet are in constant movement. Her doctor has now prescribed Klonopin which she starts today. Other medications she is on are Neurontin, Norvasc, Phoslo, Reglan, Prevacid, Lexapro, and Ambien.

If your mother does have RLS, Klonopin may not be a reasonable drug for her daytime RLS. For most RLS patients, the only benefit derived from Klonopin is falling asleep at bedtime when RLS symptoms are preventing sleep. If given in the daytime, it will likely just put her to sleep and make her drowsy when not asleep.

Requip or Mirapex (used a little more carefully for dialysis patients as it is cleared by the kidneys) are still the best choices. If these do not help then painkillers may be the next choice as she is already on Neurontin which is another RLS drug.

Although RLS is very common in dialysis patients (over 50%), it does not sound as if she definitely has this problem. Check below with the RLS diagnostic criteria and you can then decide:

To determine whether or not your symptoms are compatible with a diagnosis of RLS read the 4 diagnostic criteria below:

1) You must have an almost irresistible urge to move your legs which may or may not be associated with uncomfortable leg sensations. The uncomfortable leg sensations (or other limbs, but the legs are the most common) are not usually painful, are often hard to describe and cause you to move your legs to get relief. The discomfort may be the classical "ants crawling up the inside of the legs" but can be merely a pulling sensation, electrical feeling or actual aching type of pain. Some RLS sufferers can only describe it as a need to move the affected limb.

2) The symptoms of urge to move your legs and uncomfortable sensations come on only at rest (sitting or lying down, but not standing).

3) The symptoms are relieved in part or completely by movement (walking, shaking or rubbing the leg, etc.). The amount of relief from moving the affected limb may vary from moderate to complete elimination of the symptoms but the symptoms come back almost immediately after the movement has stopped.

4) They also occur only or are worse in the evening, especially when going to bed. As the RLS worsens, symptoms start occurring earlier in the day and may even then occur upon waking up in the morning.

If your leg problems are similar to above description then you likely have RLS and if they are different then you should look for another diagnosis to explain your problem.

Sent: Thursday, April 05, 2007 10:18 AM
Subject: PLMD

I had a sleep study done and am suffering from RLS and PLMD. The Drs prescribed Mirapex and I am now on .5 before bed. Within the last week due to, I think the PLMD waking me, I absolutely had no choice but to go to sleep one day at 6 PM and another at 4, I just could not stay awake another minute.

I am going to call the doctor. to say the Mirapex is not working and that I would like to try the Temazepam, which is more specifically for PLMD. The Ultram seems to be handling the RLS, but with the PLMD waking me (evidently 8 times an hour) I am waking up and don't know it and not getting restful sleep.

I will go off the Mirapex if he puts me on something else, however I did read today that doctors. might try adding a dose of Mirapex for when I wake up, we'll see.

What thoughts do you have?
Dan

PLMD is somewhat controversial to treat. In fact, some RLS/sleep specialists do not even believe that PLM can cause enough disturbance of sleep to result in daytime problems and suggest that it should NEVER be treated. Additionally, 8 plm arousals/hour is considered a very mild amount of PLMS (most of the cases that are treated have over 40-50/hour).

If PLMD is to be treated, dopamine agonists are the drugs of choice. You may need a higher dose of Mirapex if that is really causing your problem. The benefit of Restoril is that although it does not really decrease PLMS, it does prevent the arousals from them. Ambien may work as well and is a safer long term drug.

Sent: Friday, April 06, 2007 2:27 PM
Subject: RLS/anemia?

I have had RLS for years, I just was told I was also anemic. Can these two be related?

Anemia (more importantly, iron deficiency) is associated with RLS in that low iron levels may worsen RLS. Every RLS sufferer should have a serum ferritin level done (even if there are no other signs of anemia or iron deficiency) and the goal is to get this number above 50 (not the 10-20 usually reported on most lab reports as being normal).

Sent: Saturday, April 07, 2007 5:47 AM
Subject: Mirapex and augmentation?

I an 80 years old and have been on Mirapex for a number Of years. I take 1 1/2 mg at night. I tried Requip but it was a while back and it made me dizzy.

Lately the Mirapex does not seem enough. Should I take more or change medicine? Mirapex has worked well. Can taking it for so long cause augmentation?

Your dose of Mirapex is very high. Most need only .125 mg to .5 mg per day. It is thought that higher doses may cause a higher incidence of augmentation but that is not completely clear.

You may be developing some tolerance to Mirapex. One suggestion might be to go off the Mirapex for 2-4 weeks (using a narcotic or tramadol as a substitute for that time) then restart the Mirapex at a lower dose. This may reset the dopamine receptors and make the smaller dose more effective.

Sent: Saturday, April 07, 2007 6:50 AM
Subject: Are my feet problems due to RLS?

My feet feel so weird but not like the RLS I experience elsewhere, and I am hoping you may have some guidance for me. They feel swollen but I know they're not. Could the codeine Contin (750 mg) a day be causing this problem?

It sounds as if the symptoms in your feet are due to a peripheral neuropathy. If they were due to RLS, they would likely feel similar to your other RLS symptoms, come on only at rest and get better with movement. Neuropathies are sometimes associated with RLS (especially in those who develop RLS after age 45) but are most common in disorders such as diabetes. It is very unlikely that you have developed these feet symptoms as a result of codeine.

If you do have a neuropathy, then medications such Neurontin or Lyrica (which may also help your RLS and allow you to decrease your codeine dose) may be helpful.

Sent: Sunday, April 08, 2007 3:04 PM
Subject: High dose of Requip

I’m a 58 year old male. I’ve been diagnosed with RLS since 2000. My neurologist in Germany prescribed L-dopa for it. When I came to the States in 2001, my new neurologist here prescribed Requip. I started at .5 mg, but have had a classic case of symptom augmentation up until now—since about six months I’m on 10 mg per day so that I can work during the day, and sleep at night. I do get sleepy when I pop that first pill (usually I split a 5 mg down the middle for the first dose after lunch, the other half at supper, and another 5 mg pill at bedtime. However, my schedule is flexible, and I can take a short nap after lunch, and when I do that, I have my best working hours of the day.

I usually wake up early (4:00 or 5:00 a.m.), so I am sleeping less than I used to, but I think I can live with this. The problem is the augmentation—I don’t want to continue this cycle of just upping the Requip dose, even though I don’t have any other side effects from it than drowsiness.

My neurologist isn’t worried. He said that Requip is relatively benign. He also said that he starts Parkinson's disease’ patients with Requip at 12 mg, and it isn’t until up around 20-25 mg that they start having problems with hallucinations. I think he’s OK with me continuing to up the dosage. I’m not sure I am—besides, it isn’t cheap.

I know that if I went off this medication, I would go bananas, and drive my wife nuts. The only relief would be walking, walking, walking, never standing still. I also know from experience that at least some narcotic drugs don’t even come close to relieving it—when we moved back to the U.S. from Germany in 2001, my family doctor prescribed a mild narcotic (I do not remember which one it was), and it did not help one little bit. If I am totally engrossed in a really exciting movie, for instance, then I don’t notice my RLS—but I cannot go to bed without taking my full dosage of Requip.

Would you be OK with this continued upward spiraling dosage of Requip, or should I go for a second opinion somewhere else?

Herb B.

It is unpredictable as to whether you will continue to spiral up to higher doses with increasing problems due to augmentation. However, the odds are good that course is quite likely. You are already on an extremely high dose (for an RLS patient) and even though PD patients do go much higher (to a total of 24 mg per day), they do not have the concerns of augmentation.

The best way to treat augmentation is to get off your Requip for a few (2-4) weeks. This period of marked RLS worsening while off Requip should be easily taken care of by potent narcotics (oxycodone, methadone, etc.). Once the drug holiday is over, you may be able to restart the Requip (or maybe change to Mirapex to see if this works better for you) and keep the dose low. You may need to take low doses of narcotics (or tramadol) with the dopamine agonist and perhaps even add an anticonvulsant (Neurontin or Lyrica).

I’ve had restless legs for some years, the symptoms gradually went from one jumping leg every 60 seconds to all the usual symptoms of crawling twitching and spasms. I have restless legs as soon as I lie down ALL the time, for anything from 10 minutes up to 6 hours of being unable to get to sleep. Stretching helps. Lie on your back bringing your right knee up to your left shoulder, holding the stretch with your hands for a count of ten. Then do the other side. Repeat 3 – 4 times. This gives good relief most times.

My partner can not sleep with me as my constant tossing, turning and twitching drives him mad. I have found the most comfortable place is our lounge suite, and have been sleeping on it for about 3 years. Not very practical or good for the relationship, it nearly ended over it. The bed you sleep in is very important, you must find the right one for you. Recently I went away with work and slept on a commercial bed called a Hotel Motel Chiropractic and for two weeks had the best sleep in eight years, the other girls couldn’t believe how keen I was to go to bed and I would disappear at 8pm whilst they went out to party, having no idea how valuable sleep is, when you don’t get it! I have now arranged to buy one from the Hotels supplier for a mere $600!!!. I can’t wait. (This is in Australia and is available from the Australian Bedding Company)

I have several other contributing factors that make the symptoms worse. Some foods certainly don’t help, I have a metabisulphate intolerance. I found a Gin and Tonic or two did help. I think it’s the quinine in the tonic water. I also found that just before my period my symptoms got worse, easing after my cycle. Heat aggravates it and I often sleep with no covers over my legs. Constipation also applies pressure in this area and my RLS is much worse if I miss 1 day going to the loo properly.

Recently I found another problem: I had a progesterone IUD fitted to regulate heavy menstruation and did not sleep at all that night and now have RLS as soon as I sit down. I am positive it has aggravated my RLS. But, I would like some more info from anyone else has had the same reaction, before I go and have it removed, just in case its only a temporary condition from the procedure, which was quite painful. I have also had three injuries to my left leg and I have a crushed disc in my lower back, which I did when I was 18. This never caused me too much trouble.

My RLS started after the first bad injury to my leg which burst a major vessel and the leg bleed internally so badly that the bruising came around from the back and almost joined in the front of my leg. In the same year I had severe personal trauma, loosing my husband to prostrate cancer and then loosing my business and my house, because of family distress (3 distressed kids). I believe these all contributed to the onset of my RLS. I also find that my gluts knot up. There are a few pressure points centre back, just below the spine, in the top of your gluts. If these are tender to the touch, have your partner massage them until they relax, painful but worth it. This makes a HUGE difference to the RLS.

Anyway, hope some of this info helps someone else. Keep looking for solutions that work for you. Every one seems to have different and varying symptoms.

It is often difficult to understand why certain foods worsen or improve RLS, but in your case I do not think that the gin and tonic work through quinine as quinine helps leg cramps but not RLS.

Sent: Tuesday, April 10, 2007 12:19 AM
Subject: Lunesta for RLS

Hi. I am really happy to have found your site. I have had RLS most of my life, undiagnosed until a couple of years ago. Any time I described my symptoms to anyone, they had no idea what I was talking about. Even most doctors--they did nothing to help me. Finally I was put on Lunesta so I could at least get some sleep (I had severe RLS symptoms at bedtime). I also got my RLS confirmed by a neurologist. He and another doctor gave me samples of Requip and Mirapex to try, but I am afraid to try them because of all the side effects I have read. I have a few questions:

1. Since taking Lunesta 3 mg a night it has pretty much taken care of my RLS (by putting me to sleep when I'd normally be up suffering) and I no longer go through a couple hours of shaking my feet, pacing the floor, rubbing my feet, etc... Is this a satisfactory solution all by itself? The Lunesta is not working as well for me as I still wake up and toss and turn a lot.

2. I would like to try the Requip or Mirapex....which would be better to start off with...which is more mild? Can I take them on an as needed basis? Can I still keep taking my Lunesta? Or, can I get off of it, and how?

3. I still have RLS and shooting pains in my feet (is that RLS related, too???) , tingling and those creepy crawlies that make me constantly have to change positions and move my legs during the day with prolonged sitting. Going to the movies or sitting in a meeting, a lecture, on an airplane, on the computer too long, etc.... really aggravates my RLS. What do I do about those times? What is best to take for long airplane flights which I have planned this summer and am dreading? Can I take the Requip or Mirapex during the day for those times or flights?

4: I keep reading that others get worse problems during the day when they take med's that help them at night. This is another reason I am hesitant to take the Requip and Mirapex. I don't want to keep upping the dose all the time. Isn't there anything to take on an as needed basis for when symptoms are really bad, or maybe I could alternate the Lunesta with the other two. I am also afraid of the rebound insomnia if I quit the Lunesta.

Thank you for any advise you can give. And, for all the advice you give everyone---it is comforting and helpful to all who suffer from this.

1) There is nothing inherently wrong about taking Lunesta every night. It would be similar to taking the Lunesta for back pain (that prevented you from falling asleep) instead of taking anti-inflammatory medications. The Lunesta is fine for long term use and it is unusual to get tolerance to this drug (so it should continue to work well for you).

2) You can toss a coin to see which you should start, Mirapex or Requip. They are both very good drugs and work equally well for most. They can be taken on an as needed basis except for people who get side effects (nausea, dizziness, etc.) that improve only after a few days on the medication. You could take Lunesta while taking Mirapex or Requip.

3) The shooting pains would be due to RLS if they occur at the same time that you get the urge to move your legs and are similarly improved with movement. Clearly, Lunesta is not an appropriate choice for movies. Taking the proper dose (different for everyone) of Mirapex or Requip about 1-2 hours before sedentary activities should allow you to enjoy these events normally without any discomfort.

4) Every drug has side effects. Most do very well with Requip and Mirapex but some (like many of the ones on the internet who are motivated to write us) do have problems. Most of these problems are easily handled (by someone who knows how to treat RLS) and should not be the reason for not taking these very helpful medications. There is very mild rebound when stopping Lunesta (in fact, the rebound is not as bad as the insomnia was off the drug previously).

Sent: Thursday, April 12, 2007 8:36 PM
Subject: Re: Lunesta for RLS

I took my first dose of Requip last night from the starter pack (so a low dosage to start out) and this is what took place: I had one of the worst nights I have had in a long time. I had complete insomnia---didn't get ANY sleep at all--I was wide awake and miserable. I took the Requip at 6 pm and I started getting shooting pains in both my legs, my hands, and muscle twitching in my arms (or some kind of spasms) for the entire night.

I usually only have a problem with my left leg/foot, so it's like the medicine made me worse. I basically stayed in bed most of today because I was so tired from lack of sleep last night and I have had those shooting pains in my feet and hands all day long.

My left leg feels (everyday...) like it is vibrating and cant calm down. It never seems to stop---maybe rarely, or when I am up and about I don't notice it. Do you think it's possible that I could have sciatica also? I know I have RLS (have had that my whole life) , but my symptoms have changed over the last so many months and I am wondering if there is more going on. I usually only get backaches (lower) if I am out shopping or standing for a while.

Would RLS cause a constant tingling/vibrating feeling down my whole left leg only? Also, if I had this kind of reaction to one low dosage of Requip (worsening or symptoms and really bad insomnia) should I even bother trying it again?

I'd almost rather suffer with the RLS than go through another sleepless and painful night like last night. Wondering if I should get some sort of x-ray of my spine?

The problem with the tingling/vibration in your left leg would only be related to RLS if it comes and goes with rest and activity (similar to your other RLS symptoms). It does sound much more likely that it may be due to a sciatic like problem but this should be investigated by your doctor.

I would not recommend trying Requip again. Ask your doctor to prescribe Mirapex, but try only 1/2 of the lowest (.125 mg) tablet. If that causes problems, then there a other medications to consider.

Sent: Tuesday, April 10, 2007 3:06 PM
Subject: Artificial Movement

I am a 51 year old male in Indiana with the "jimmy legs" for 15 years.....

I have 2 questions:

1) has there been any study in regard to an "artificial" movement of the legs during sleep to eliminate or minimize the feeling that we all get to "move" ? Basically and simply I'm speaking of a device that would simply fit on the legs and periodically "move" them. Or, is RLS such that the brain activated motor function would not respond to - or recognize that type of movement ?...

2) Has Requip been shown to cause weight gain or loss with proper use ?

SRN

There are no studies that I know of involving artificial moving the legs as treatment for RLS. It would likely be very difficult for most people to sleep with these movements. It is also quite likely that they would not be very helpful.

Weight gain or loss are not really amongst Requip's known side effects.

Sent: Tuesday, April 10, 2007 9:08 PM
Subject: Yoga provides some relief for RLS

I am a 43 year old woman and have suffered from RLS for at least 13 years. It started when I was pregnant with my second son. For years doctors told me I wasn’t getting enough calcium or potassium. I must admit, sometimes eating a banana before bed did help for awhile. I underwent a sleep study last year because my husband was convinced I had sleep apnea. The results showed that I have very mild sleep apnea, but my biggest problem was Periodic Limb Movements or RLS.

I was waking up 55 times per HOUR. Never getting REM sleep. I was thrilled just to have someone acknowledge my problem and know that it was actually something real. I started taking Requip and it was a miracle drug for awhile. Now, it only seems to help about half the time. The doctor suggested taking two doses of Requip, but that makes me extremely nauseous and I usually wake up and vomit. Not really a good alternative.

The one thing I have found to help me is a certain yoga pose which I know as a shoulder stand. You lie on your back, with both legs pointing straight up in the air, support your back and roll up onto your upper back/shoulders. Try to keep your legs as vertical as possible. I count to 60 in this position and slowly roll down. It’s amazing. It somehow helps my circulation and usually helps me sleep. If you haven’t tried yoga, I suggest buying a VHS tape or DVD of beginning yoga and work up to this. I have not read anywhere else that other people use this. If it works for you, please email me and let me know… maybe we’re on to something here…

Thanks to all of you who wrote in to this website. Is does help to know that we are not alone and not crazy!

It is actually very common for Yoga or stretching exercises to help RLS. However, what helps one patient does not necessarily help another.

Sent: Thursday, April 12, 2007 6:15 AM
Subject: Mirapex augmentation?

I have had RLS for the past 8 years and have been taking .375 mg of Mirapex at 6 pm every evening (last dose change 3 years ago). This past year I have been getting symptoms in my arms and the RLS usually starts sometime early afternoon. This terrifies me as I am scared that I will have to change medications.

I was wondering if I should increase my 6pm dose as a start as this dose isn't as effective anymore? If so how much should I increase it by? Could you also talk about the options of dealing with the afternoon RLS?

You are experiencing classical augmentation of your RLS (worsening due to Mirapex). You can treat this by taking an earlier dose 1-2 hours before your afternoon symptoms are occurring. If things get worse, you may have to stop the Mirapex for 2-4 weeks (using narcotics in the meantime) which may reset your dopamine receptors. You can then restart Mirapex at a lower dose or change to Requip.

Sent: Thursday, April 12, 2007 8:49 AM
Subject: Re: Mirapex augmentation?

Thanks for your prompt response. Just one more question. I seem to be able to cope with the afternoon symptoms so I was wondering about increasing my evening dosage?

Bev

Increasing the evening will likely improve your evening RLS symptoms (just make sure that you are taking your evening dose 1-2 hours before the onset of symptoms). However, there is a risk of increasing augmentation. If that happens, you may need to follow my first suggestion about stopping the Mirapex.

Sent: Thursday, April 12, 2007 11:51 AM
Subject: Opioids?

In your book, you have a chart comparing narcotic drug doses. For people like me who have 24/7 RLS and have no success with other types of drugs, I use Ultram for 3 weeks and then 10 days of fentanyl patch for a drug holiday from the Ultram. The drugs that you have listed as high potency- are they all similar in effectiveness and the way they work?

My doctor chose the fentanyl patch but I still take vicodin with it for the evening and nighttime because the fentanyl alone doesn't fully control my symptoms at these times. Would any of the other high potency drugs be more effective (I take the lowest dose listed for the fentanyl).

P.S. Does using the lowest dose plus another pain killer to control symptoms decrease the chances of addiction as opposed to taking a higher dose of the stronger drug?

P.S.S. I take a 10 day holiday from Ultram because I've taken it for 10 years and am now experiencing augmentation when I stay on it for more than 3 weeks at a time.

As all narcotic drugs work on the same narcotic receptors, adding one narcotic (Vicodin) to another (Fentanyl) is the same as just increasing the dose of either drug.

Taking more of a low potency drug is the same as taking less of a high potency drug. However, some RLS patients do respond better to some drugs compared to others (no idea why, just that we are all different). Generally, I find that methadone works the best for most (most effective and safest), but this can vary considerably from person to person.

Sent: Thursday, April 12, 2007 7:31 PM
Subject: RE: RLS

Is there anyone keeping records of other problems that people with RLS have, to determine if other health problems are the actually cause of RLS. I am curious if my thyroid was the problem or the fact that I was extremely anemic when I was first diagnosed. The second round of tests that I had showed my iron levels were “low normal” but my ferritin levels were really low. I am still supplementing with iron. I will go next month to have my blood work done and hopefully it will be up and I can stop taking the iron.

I hope it does not return, I got really tired off having to hang my legs over the side of the bed to go to sleep. It was that or get up.

Renee

Research is being done but so far, only a few links with other medical problems and RLS have been found. It is very possible that your low iron levels may have been contributing in a very substantial way to your RLS.

Sent: Friday, April 13, 2007 10:29 AM
Subject: Validity of iron tests

I have been taking an iron supplement for about 7 weeks now. (65 mg elemental iron from 325 mg ferrous sulfate.) Recently a doctor whom I was seeing about feet pains learned that I was taking this supplement and ordered some lab tests, my first iron test after 10+ years with RLS. I learned later that iron tests are not accurate if one is taking an iron supplement and/or vitamin B-12, and I'm taking both.

Anyway the results were: Iron: 77mcg/dL; Total Fe binding capacity: 298mcg/dL; Iron saturation: 26%.

Does any of this data shed any light on what my serum ferritin levels might be? Would I be wise to strongly urge my HMO to give me a serum ferritin test, and what preparations should I take to make the test as accurate as possible?

Socalede

The serum ferritin level is much more accurate than the iron studies (which are helpful in addition to the ferritin). The iron studies are accurate enough while taking iron supplements (that is how we monitor iron therapy). You should have a serum ferritin test (no preparations are necessary) in addition and the goal is to get it over 50.

Sent: Friday, April 13, 2007 9:40 PM
Subject: RLS

I have had restless legs syndrome nightly for 7 or 8 years now. I have tried Sinemet which ultimately made my symptoms worse as it causes "augmentation and rebound" after a while-my dosage was slowly increased until they became so unbearable, I was living on 2 hrs of sleep a night and unable to sleep during the day.

This is when I learned about augmentation and rebound. I was then given Mirapex .25 mg which has saved my life and sanity. I have taken it for 4 or 5 years now and it is becoming less effective. I am presently trying rhus tox. but I am not sure it will work, as I have just started but am willing to give it a good try.

I have also tried Permax but the side effects were not nice. Alcohol makes my symptoms worse as well.

If the Mirapex is not working as well (which may be due to tolerance), then increasing the dose a little (to .375 mg for example) may be helpful. However, if you develop symptoms of augmentation, then changing to a different class of RLS medication may be a better idea.

Sent: Saturday, April 14, 2007 9:05 AM
Subject: RLS/insomnia?

Six weeks ago I had to begin weaning off of Trileptal, which I take for seizures. Before I took it I had occasionally suffered from bouts of RLS...the worse being during my pregnancy. I have not suffered any RLS symptoms for more than four years while taking Trileptal. I have tried to take Lamictal, gradually increasing over the last 6 weeks, while decreasing Trileptal.

It has caused a lot of problems such as weight loss and insomnia so a decision was made to switch to Gabitril. I am gradually increasing it while decreasing Lamictal. I have only taken it for 4 days and my RLS symptoms have gotten worse and even seem to be in my arms. I have not slept a for more than 3-4 hours a night for nearly 3 weeks and wonder if that is causing the RLS to be more intense. I have read Gabitril is supposed to help with RLS is this true?

Is there any herbal supplement that I can take to help relieve the symptoms so that I can sleep? I am becoming desperate and even went to the ER the other morning after not sleeping for a consecutive 36 hours...

I appreciate any insight that you can give. I am a mom and a teacher and need sleep to be able to do both effectively...

Kelly

It is most likely that the Trileptal was controlling your RLS and stopping it has now revealed how bad your RLS has become. Although all anti-seizure drugs (such as Gabitril) should be able to treat RLS, this is very unpredictable with some drugs helping some but not others.

It may be helpful to start Mirapex or Requip. Herbal remedies rarely help RLS.

Sent: Tuesday, April 17, 2007 2:14 AM
Subject: Mirapex side effects?

My Neurologist prescribed Mirapex approximately five years ago. It was a God send . Before the Mirapex I was seriously ready to cut my legs off That is how bad my legs were.

Now five years later I have been having a lot of different symptoms Such as trembling, jerking , loss of memory, falling asleep at times hallucinations, are a few to mention.

Could these multi symptoms be from the Mirapex? My Neurologist has not mentioned these side affects to me I finally went on the internet to get the side affects on Mirapex .

Cristal

These symptoms could be due to the side effect of Mirapex. However, if your dose has not changed and the symptoms have appeared just recently, other causes are very likely. You should discuss this problem with your doctor and see if he can find another cause.

If the symptoms persist, you can have a trial off Mirapex using a drug such as a narcotic to control your RLS while off the Mirapex.

Sent: Friday, April 20, 2007 4:02 AM
Subject: RLS question

I have been suffering with RLS for well over a year now. It keeps me awake at least 3 to 4 nights a week. I'm an unhealthy person to begin with and the lack of sleep is making my other conditions must worse.

I have hypertension, hypothyroidism, anxiety, mild depression, and my stomach is full of endometriosis. I am on Darvocet for the abdomen pain, Lexapro for depression, lorazepam and Vistaril for anxiety, lisinopril for hypertension, and levothyroxine for hypothyroidism. And because of the RLS, I don't get the sleep that I need so badly.

I am on 1mg of Requip 1 to 3 hours before bed. The first week I was on it, it worked marvelously. The second week I had 2 episodes of the RLS. And this week (the third week) I have had it pretty severely 2 nights in a row. When I have my Darvocet along with the Requip, I have no problems at all. I lay down and go right to sleep and sleep all night. But I know my doctor won't let me stay on the darvocet for any amount of time.

Now, my question is this. Is there anything other than lifestyle changes I can do at home to help alleviate the symptoms? Elevate my legs while sleeping or anything like that? I need some serious relief from RLS. It is causing all my other health issues to worsen because of the lack of sleep.

Sleepless in Maine

You should speak to your doctor about either increasing your Requip dose (to 1.5 or 2 mg) or using Darvocet (or better yet, Darvon which contains no acetaminophen that does not help RLS). That should take care of your RLS problems.

Usually nausea is a side effect of Requip which can be made better by taking it with food. Generally, if the bloating was due to Requip, it should get better within a few days off the medication.

I took Requip for about 5 week's, and had to stop it because of very severe bloating of my
stomach. Every time I ate it felt like my stomach was going to pop. Is this a side affect of Requip? I've been off of it for 2 weeks and still haven't got a lot better.

David B.

Usually nausea is a side effect of Requip which can be made better by taking it with food. Generally, if the bloating was due to Requip, it should get better within a few days off the medication.

A Reply from David

Sent: Wednesday, April 25, 2007 6:39 PM
Subject: Re: Requip side effects?

Could it be possible it would take me longer to get straighten up on my stomach problem's, since I have celiac disease. I still bloat up after I eat. I was on Requip for 5 weeks.

David B.

The side effects of Requip should not be prolonged, even with celiac disease (although anything is possible, it is not very likely).

Sent: Wednesday, April 25, 2007 4:37 PM
Subject: Mirapex Side Effect?

I've recently been diagnosed with RLS and prescribed Mirapex .5mg. I'm also diabetic and take Januvia and Glucophage XR. I began taking all three of these medications at the same time and expected some issues with the Januvia. It seems like when I take the Mirapex I get an extremely stuffy nose and have symptoms that are like the onset of the flu (achy, tired, run down). Could this be an interaction between the drugs, or a side effect of the Mirapex? I've taken Requip and didn't have the flu like symptoms and stuffy nose.

Roger, 39, WV

Your new symptoms may be due to Mirapex. It could be due to the dose (as Requip and Mirapex share many of the same side effects) as Mirapex is 2-4 times as potent (on a mg basis) as Requip (therefore, your .5 mg of Mirapex is like 1-2 mg of Requip). You should be able to tell if Mirapex is the culprit by stopping it for a few days and see if these new symptoms to away.

It is much less likely that Mirapex is interacting with your other drugs to cause these new complaints.

Sent: Friday, April 27, 2007 7:14 AM
Subject: PLMD?

I've been suffering with PLMD for several years, and am now 68 years old. My grandmother had it, and three of my 6 children have it. I'm taking Requip and it seems to work fairly well, allowing me to at least fall asleep. The problem is that Requip can't be taken on an empty stomach, or the dizziness and nausea creep in.

Having to eat late at night (when I WANT to feel sleepy) so I can take the medication, is causing me to put on more weight than I want. If I just eat a couple of crackers, the nausea comes anyway, so I'm having a hard time figuring out how much I NEED to eat to take the pill. Can your group help with any answers/suggestions?

Patricia DP

You might want to take the Requip with dinner. However, as you are taking it a lot earlier, you may need to increase the dose (slowly, until you find the correct level). Another alternative would be to take the same dose at dinner but add a smaller dose (that you could take with a minimal amount of food) just before going to bed.

Requip XR (a 12 hour slow release form of Requip) may be available in a year or so which should solve your problem as you can take it earlier with dinner and it will cover you all night.

Sent: Friday, April 27, 2007 8:55 AM
Subject: medications

I stumbled across this page when googling RLS + gluten. I heard about a connection third-hand and can't find anything (yet). I'm 73, and I've had RLS for 20 years, but in the last several years it has become disruptive. I have sleep apnea controlled by a breathing machine/mask.

I was interested to see that mild exercise helps but strenuous exercise exacerbates the RLS. I have been constantly adjusting the Requip because of morning augmentation, and the neurologist recommends switching from Lexapro 20mg to bupropion. What is known about gluten?

Also saw a letter about peanut butter. Is it known whether food allergies play a part in RLS? We are an allergic family, with one son already showing RLS.

The change from Lexapro to Wellbutrin (bupropion) may help your RLS and hopefully be reasonable for your mood disorder.

As far as foods and RLS, there are only anecdotal reports from patients listing many such as gluten (which seems to be quite common) but this has never been systematically studied and is definitely not well understood.

Sent: Friday, April 27, 2007 7:30 PM
Subject: RLS occurring earlier with Requip?

My mother is on Requip and is now starting to have symptoms earlier and earlier around 8:00 pm rather than 10:00 pm. She wanted to know what you recommend. (the doctors in Louisiana don't know much about RLS.) She says the Requip makes her sleepy and from what I have read, it shouldn't make you sleepy just stops the RLS symptoms.

It sounds like your mother is experiencing augmentation from Requip. This is a worsening of symptoms due to the drug itself with the most common problem being an earlier onset of symptoms. If the symptoms just occur earlier and are not much worse than before starting the Requip, it may be treated by giving the medication earlier (1-2 hours before the new onset of symptoms, or 6-7 PM in your mother's case).

This may be a problem as sedation is one of the potential side effects of these drugs. If that is the case, she may do better with a daily pain pill (narcotic or tramadol) instead of the dopamine agonists (Requip or Mirapex). However, it may be still worth trying Mirapex after a short period off the Requip (1-2 weeks).

Sent: Saturday, April 28, 2007 12:25 PM
Subject: RLS not doing well with Requip?

Until I tried Requip, my doctor gave me Restoril and if I didn't take it early enough to go on to sleep. the legs would keep me awake. I've spent lots of nights walking and sitting in a shallow tub of hot water. The Requip does work, but I'm having to take it by 7;00 .....by 8;00 or so, I'm getting sleepy. I could make myself stay awake but I FEAR my legs will start aching (mostly behind my knees).

If my legs do start to ache, could I take another 1 mg pill or less . Also, we do go out for dinner some, and I don't know when to take it. My doctor also gave me clonazepam 1mg to take if I needed it to sleep, and I do take it most every night when I wake up about 1;00. I like my doctor but I just think this is such a new disease that is finally being learned about that she has not had to deal with it much!!!!!!

I will ask her about Mirapex. I have tried to deal with this without too much narcotic but I realize that I have to sleep. I envy people that can just stay up 'till 10 or later , even read in bed, then go to sleep. Oh well, I still have a lot to be thankful for like my sweet daughter that is always trying to help me.

If the Requip is making you sleepy, it may be a problem for you to take it earlier. If that were not a problem, you could simply take the Requip 1-2 hours before going out to eat and that would solve the problem with RLS appearing while at dinner. If the Requip does not last long enough and you feel you need an extra dose, your can take another 1 mg (or even 1/2 a pill) before bedtime. It might be worth trying Mirapex (if the side effects of Requip are bothering you) to see if it is as or more effective with fewer side effects.

Be careful with your clonazepam as it is an addictive drug that can easily cause tolerance and dependence (not to mention next day drowsiness due to its very long half-life of 40 hours). If you do need to take a sleeping pill that often, the non-benzodiazepines (Ambien, Lunesta) are much safer and shorter acting.

Also, clonazepam is not a narcotic (this term refers mainly to the pain meds that are related to morphine such as Vicodin) but rather a benzodiazepine sedative (related to Valium).

Sent: Sunday, April 29, 2007 4:06 PM
Subject: Lexapro and Requip

I have been treated for depression in the year and 1/2. Lexapro was drug of choice and my Internist also ordered Ambien for sleep. To complicate problems, I have restless legs which were treated with Permax until 6 weeks ago when the warnings of the cardiac side effects became known.

I am on 1.5 mg of Requip and still not completely controlled. My body is telling me that Requip and Lexapro are not a healthy combination. I feel wired all of the time and cannot even sleep that well with Ambien. My doctor is intending to take my off Lexapro in the near future.

JC

The side effects of fibrotic heart valve damage have been known for some years but due to two recent research articles finding that they were much more common than we realized (up to 23%), Permax has been voluntarily withdrawn from the US market.

Requip is generally as effective as Permax so depending upon your previous Permax dose, you may need more Requip. Despite Requip having fewer side effects than Permax (in general), it seems that you may be suffering from Requip induced insomnia and therefore increasing the Requip will likely result in worsening of this problem. You might want to try Mirapex and see if this very similar drug has a different side effect profile.

Lexapro and other SSRI antidepressants tend to worsen RLS. As Wellbutrin does not worsen RLS, you may do better by changing to it as long as it takes care of your depression as well as Lexapro.