Patient letters on RLS symptoms and remedies- Page 95

Sent: Sunday, April 24, 2011 2:01 AM
Subject: Treatment of EKD (Ekbom's Disease or RLS) related chronic insomnia

I have had hereditary Ekbom’s almost all my life, (I’m 64, female) but only sought pharmaceutical help a year ago when continuous lack of sleep was beginning to erode my quality of life. At first, I found that ropinirole at the lowest dose (0.25 mg) was enough to banish my EKD symptoms but I was surprised that I was still left with chronic insomnia which was treated reasonably successfully with two or three drops of liquid clonazepam every night before bedtime.

For 6 months, following this regimen, I was able to lead a normal life again, but over the past 2 months this treatment has gradually become less and less effective, resulting in broken patterns of sleep occurring almost every night. I have now increased the Ropinirole to 0.50 mg but again find that, though the EKD symptoms are under reasonable control once more, I still have intolerable, residual insomnia. My doctor has prescribed the sedative zolpidem and I have started on a dose of 5mg which I have taken now for 2 nights without much effect, so far. Last night I achieved only 20 minutes sleep and the night before that, I managed 5 hours solid but woke much too early.

My questions are:

1) The information slip that comes packaged with Zolpidem says that it is for temporary use only. Is this drug ever used long term?

2) Would you advise taking Zolpidem for a short while to help me over this bad patch and then try to tail off to nothing if my sleep cycle begins to improve?

3) If my insomnia is learned behavior due to so many previous broken nights, do you think that it should be possible to rid myself of insomnia behaviorally, without sleeping pills, now that the higher dose of Ropinirole means that I am not being woken with EKD symptoms?

I’m already doing pretty much everything that is recommended in the way of sleep hygiene. Could it be that it just requires a little time on the higher dose of Ropinirole, for my sleep cycle to settle down, naturally?

Christine C.
France

Medical Reply

You are correct about your insomnia being a learned behavior after years of suffering from RLS. This is very common and does require careful treatment.

I am not sure why you increased the ropinirole when the lowest dose was relieving your RLS symptoms? Unless you had persistent RLS symptoms, you are better off on the lower dose.

Clonazepam is one of my least favorite drugs (see the many other email letters on this topic). Zolpidem (called Ambien here is the USA) is one of the drugs that I do like for treating insomnia (RLS related or otherwise). Although this drug has a warning against long term use (more than 3 weeks), it is commonly prescribe for long-term use by most sleep specialists. If you do have any concern about daily use of this drug, you can take it 5 out of 7 days (but you may not sleep much on the 2 days off the drug) which guarantees no potential for dependence or tolerance.

Correct sleep hygiene is important but there are other things that can be done. Other drugs such as Rozerem (ramelteon) may be helpful.

A Reply from Christine

Sent: Monday, April 25, 2011 5:13 AM
Subject: RE: Treatment of EKD related chronic insomnia

My original dose of 0.25mg Ropinirole + 2 drops Clonazepam worked very well for about 4 months and then the RLS and PLM symptoms gradually returned, disrupting my sleep more and more. I assumed I had become tolerant to the ropinirole dose and so, after several weeks of hoping in vain that things might improve, I reluctantly increased the dose of Ropinirole to 0.50mg. The RLS symptoms wake me up less now, on the higher dose - it is more the insomnia which now keeps me awake.

I have read your book and some of the letters on the forum and I know you prefer the sedative Ambien to clonazepam. I have been taking half a 10mg Ambien tablet for only a few days now, instead of clonazepam and my sleep has been less disrupted, though I do seem to be waking up after only a block of about 5 hours, after which I am unable to fall asleep again, so unfortunately, my sleep is still “in the red”. I take a siesta at midday (when I usually have less difficulty in falling asleep naturally), to try to increase overall sleep hours,

I will try to do without the Ambien 2 days of the week, as you suggest. Do these 2 days need to be consecutive?

Christine C.
France

Medical Reply

Tolerance typically does not occur with ropinirole but augmentation (somewhat similar) is more of a concern. If you find that fairly soon you have make further increases in the ropinirole, have RLS in other body parts, have earlier onset of symptoms or an increase in intensity of symptoms then augmentation may be the problem. If that is the case, let me know and I will give you further recommendations for you to discuss with your doctor.

It is also possible that ropinirole is causing your insomnia (even though sleepiness is a more common side effect issue). For the short term, I would consider taking Ambien on a more regular basis which might help regulate your sleep pattern. When taking time off, 2 days in a row is preferred. However, I have many patients who use Ambien on a daily basis for more than a decade without problems.

A Reply from Christine

Sent: Tuesday, April 26, 2011 5:08 AM
Subject: RE: Treatment of EKD related chronic insomnia

It was interesting that you say that tolerance is uncommon with Ropinirole. I suppose, therefore, that I am experiencing augmentation. I’m afraid I can’t be very clear about whether I have experienced an increase in intensity of symptoms or not. I am currently experiencing RLS symptoms pretty well around the clock, though worse in the evening and at night and I do have “buzzing” sensations in my elbows and lower arms as well as my legs, plus incredibly stubborn insomnia, but none of this is unfamiliar to me. I have often had this same severity of symptoms in recent years when I was taking no medication at all.

It became particularly bad in summer, when my workload becomes considerable, (I run a B&B in the summer months only). I just assumed it occurred because I was over-tired in the extreme. The RLS symptoms usually subsided after I closed the B&B for the winter but last year, they remained, at which point I turned to my local doctor for help. I have recently reopened the B&B for this season and I am wondering if anxiety about the renewed workload has anything to do with my recent deterioration. I am actually intending to sell the business and retire because of the RLS it provokes in me.

Last night I took a complete break from both Ropinirole and from Ambien because I felt confused about the treatment. Needless to say, I only slept for one hour the whole night, despite being absolutely tired out. It seems that the more tired I am, the less I sleep. Even a siesta eluded me today.

I am confused:
1) …about possibly having increased my Ropinirole dose unnecessarily, though isn’t 0.50 mg still a relatively low dose?
2) …about Ambien seeming to be too unnaturally sending me to sleep for a “blotto” block of about 5 hours. I then wake up and am unable to fall asleep again.
3) … about the dangers of dependency and the prospect of having to have 2 days off Ambien per week.
4) …having read on your site about drug holidays, I wondered whether a total break from any medication at all, for a few painful weeks, might enable me to eventually return to the initial, successful combination doses of 0.25 mg Ropinirole and 0.2 mg clonazepam, (2 drops liquid Rivotril)? At that tiny dose of Rivotril, I was experiencing no daytime somnolence, but it seemed to help me get a reasonable night’s sleep – for 4 months.

Christine C.

Medical Reply

I can’t say that you are experiencing tolerance to ropinirole but I do not see that happen very often (which of course does not mean that you don’t have it). However, augmentation is so much more common (and similar) that it is still the much more likely diagnosis. You are correct in that .5 mg of ropinirole is a low dose but problems such as augmentation occur at all doses (although are more common with higher doses).

It may be that the Ambien is giving you very “good” sleep so that 5 hours is all you need but it is likely that you need a longer acting drug. Ambien CR has been designed to address that problem and may be a better choice for you (also zopiclone may be a reasonable alternative). Although you are focused on drug holidays, I usually do not insist on my Ambien patients taking them. Even at low doses (such as you are using), I am not a big fan of clonazepam. The daytime sedation issues are most often not appreciated or perceived well by patients.

Stopping a dopamine agonist (especially when you are having RLS issues) is virtually guaranteed to cause marked worsening of your RLS symptoms for several weeks. There are ways around that issue however.

Sent: Monday, February 07, 2011 1:29 PM
Subject: Vilazodone and RLS

Do you think that vilazodone might be less detrimental to RLS sufferers than the rest of the SSRI's we have now? According to Wikipedia "Vilazodone acts as a serotonin reuptake inhibitor  and 5-HT1A receptor partial agonist".  It has negligible affinity for other serotonin receptors such as 5-HT1D, 5-HT2A, and 5-HT2C.

I don't know exactly what that means for us RLS sufferers but if it's true, do you think that would translate into less aggravation of RLS symptoms or is it too early to say? I'm really hoping that this will be another option for us.

Kara S.

Medical Reply

Unfortunately, I don’t think we have any evidence that vilazodone will be any better for RLS patients than the other SSRI antidepressant drugs. Its benefits (from its dual action) appear to be more for reducing problems with sexual dysfunction which has nothing to do with its tendency to worsen RLS symptoms. However, time will tell if this drug may be more RLS friendly than the older SSRI drugs.

Sent: Tuesday, February 15, 2011 4:42 AM
Subject: Could you recommend an RLS specialist in Maine?

I have moderate to severe RLS, with onset about 6 years ago and gradual worsening.

My PCP prescribes gabapentin and ropinirole.

I started with 300 mg gabapentin at bedtime, & currently take 600 mg at bedtime followed by 300 when I awaken (always after 4 hours). I had gone up to 1200 at night but my PCP warned me this was too much.

I started with 2 mg ropinirole at bedtime, & currently take 4 to 6 mg at bedtime followed by zero (when I'm paranoid that it keeps me awake) to 6 (when I'm desperate) when my 4 hours of sleep expires.

I take the meds before dinner (7 pm), and am asleep by 8:00 to 8:30 pm. I awaken between midnight and 1:00 am. It takes 60-120 minutes to get back to sleep after taking the 2nd dose. "Knee-knocking" exercises (1000 repetitions) help sometimes.

I get up at 4am when the alarm rings, eat, drive 30 miles, swim laps 60-90 minutes, work 10 hours, drive home, eat, and go to bed. I am groggy 24/7. My distance vision is deteriorating (possible side-effect of gabapentin?). Would that reverse if I d/c gabapentin? I'm considering getting new glasses.

I've tried cutting out caffeine (1 to 2 cups of tea before 8am depending on my degree of desperation), but have seen no difference on 3-day trials. I've tried skipping my one glass of wine with dinner, but see no effect.

My iron/ferritin level was checked recently and deemed quite high (I don't have the # with me). I had been taking 1 multi-vitamin with iron twice weekly (I'm 64), so I stopped. It was about then that the RLS got even worse, though perhaps coincidental. The RLS had begun 6 years ago when I started menopause and stopped taking iron daily.

I now have that awful RLS feeling in my lower back and legs most of the day, most days. I avoid meds until bedtime as a rule, but if in a confined space (theater, concert hall) even 300 mg an hour before the performance is not enough... I have to flap/vibrate my legs constantly, or else I'll have a full-body JERK every minute or so. If I take another 300 mg I stop writhing, and fall asleep!

My PCP says she has no further ideas and doesn't know where to refer me. I live near Waterville, Maine.

Sharon S.

Medical Reply

It sounds as if you are experiencing augmentation (worsening of RLS from taking a dopamine drug like ropinirole). You are already on high doses of ropinirole but increasing the drug will only help temporarily and will ultimately result in an increase of your RLS symptoms. The treatment for this problem is to get off the ropinirole. However, stopping the ropinirole will result in a temporary (a week or two) marked worsening of the RLS symptoms before the RLS returns to baseline levels (approximately to where you were before starting the drug). There are ways to make this a reasonable experience but it does take a knowledgeable RLS doctor.

Gabapentin does cause sedation as a side effect especially at the higher doses that you are taking. Lyrica may be a better choice. It is unlikely that the gabapentin is causing your visual disturbances unless that is due to the sedation effect of gabapentin.

Oral drugs take months or longer to help RLS symptoms so it is unlikely that stopping or starting them will have an immediate actions (especially if your ferritin level is already high).

There are many ways to treat your RLS symptoms so that you do not have to suffer.

Sent: Friday, February 18, 2011 11:31 AM
Subject: Need relief

Started on gabapentin because I had an overwhelming urge to get up and move; this would only happen in the evening. Now I am experiencing burning sensations in both legs (24/7) and is relieved only when my legs are in motion. Had a discussion with my doctor and we decided to start on Mirapex .125 mg.  I’m up to .75 mg and I haven’t felt any relief as of yet (been on this dose for about a week).

I was wondering if I should give this medication more time to work and how high of a dosage would you recommend? The gabapentin doesn’t seem to be helping my symptoms anymore.

Tami P.

Medical Reply

It is unusual for Mirapex not to help RLS symptoms (only a few percent do not respond to dopamine agonists like Mirapex). However, I would not recommend increasing the dose above .75 mg as that is typically the maximum effective dose and if you have had no response by now it would be very unlikely for you to respond to even higher doses.

If your discomfort is due to RLS then painkillers (opioids, tramadol) may be helpful. Lyrica may be helpful but is in the same class of drugs as gabapentin.

Sent: Friday, February 18, 2011 3:49 PM
Subject: Re: Changing from a Klonopin/gabapentin combination

After trying to work with my internist for my RLS/PLMD and not getting very good results (I was on Requip), I went to a sleep specialist/neurologist. My question is about the sleep meds that I have been also taking while we try to find a med to treat my PLMD, which keeps me awake at night (or wakes me up) without meds. My internist gave me 1200 mg of gabapentin, and told me I could also take .25 mg Klonopin (any more than that makes me groggy the whole next day).

There are still some nights when the combination above doesn't help: 1-2 nights per week, so I started to wonder if this is the best combo for me. The more I've read about RLS treatments/meds, the more I think that another drug in the sedative/hypnotic class with a shorter half life might be better than taking all the gabapentin and Klonopin. When I brought this up with my neurologist, he didn't want to make a change. He doesn't seem to like that I'm reading/learning about RLS treatments and asking questions.

This makes me want to go back to treatment with my internist, because at least he listened to my ideas and concerns. Mostly, I want something to help me sleep on the nights when the Klonopin/gabapentin combination does not work. After 7 months of this, I've developed some learned insomnia, partly due to losing so much sleep and with no clear end in sight.

Last week the neurologist switched me over to Mirapex, and I started it on Tuesday night and beginning Wednesday morning had early awakenings, which have continued every night since. However, the PLMS seem to be GONE, which is very good. The doctor has said I can cut back to half a pill.  I haven't made this change yet, because I'm nervous about taking it at all, I've lost so much sleep since then. 

Katy K.

Medical Reply

Despite its long half-life (40 or more hours), many doctors (even specialists like sleep specialists and neurologists) like to use this drug. It is one of my least favorite drugs as there are many shorter acting sedatives/sleeping pills that have a much safer drug profile. Mirapex does markedly reduce PLM (dopamine agonists are the most effective drugs for PLM) and when kept in low dose should be fairly safe.

Often the best treatment is using a combination of drugs at low dose which reduces the side effects. However, there is not one standard therapy and treatment really has to be individualized.

Sent: Sunday, February 20, 2011 2:35 PM
Subject: Anti depressant use and RLS

Hi there I am a 42 years old women who has all of a sudden become an insomniac! I have had RLS for a few years but it seems to have worsened. I have been on Citolapram for depression and have been weaning myself off it [with the advice of a doctor]. Could RLS be worsened by dropping my anti depressant dosage?

Mandy
New Zealand

Medical Reply

Typically, citolapram (Celexa) worsens RLS so weaning off it should be helpful. However, if your depression/anxiety increases while weaning off the drug, it is possible that the RLS might worsen.

 A Reply from Mandy

Sent: Tuesday, February 22, 2011 2:18 PM
Subject: Re: Anti depressant use and RLS

Thanks so much for your reply. I was starting to wonder if something very ominous was happening to me. You have reassured me. My experience [FYI] was that when I was on a high dose of citolapram the RLS kicked in and I had an inkling I needed to lower the dosage to help me sleep. I talked with my doctor and agreed it was time to begin the weaning.

I stupidly weaned too fast which is probably why RLS has worsened - my body probably is a little more anxious and that is the cause. All good. I will persevere and hopefully be back to ok soon. At least I know what's going on thanks to you!!!

Mandy

Sent: Tuesday, February 22, 2011 2:26 PM
Subject: Galantamine and RLS?

My mother, who has RLS, has recently been prescribed Razadyne (galantamine). I read in your book that nicotine is bad for RLS and I also read that galantamine effects the nicotinic receptors in the brain. Does that mean that galantamine will make her RLS worse? I didn't notice galantamine on your list of drugs to avoid but I'm wondering if you know any more about it's effect on RLS.

Kara S.

Medical Reply

The link between cigarette smoking and RLS is very weak. This was derived from one population study that demonstrated a possible connection between increased smoking and RLS. This study has never been duplicated and most RLS experts are not sure whether this link actually exists (harder to observe this today with the marked decrease in smokers).

The nicotinic receptors are actually different from the receptors that the nicotine in cigarette smoke acts on. Thus, even if there was a link between smoking and RLS it is unlikely that it would have anything to do with your mother taking the Alzheimer’s drug, Razadyne (which to the best of my knowledge should be fine with RLS).

Sent: Wednesday, February 23, 2011 8:14 AM
Subject: Restless legs and drug interaction

I have been on Ropinirole for about 18 months and am now on the maximum dose of 4mg a day. I have augmentation and taking the dose split, i.e. 1 mg around 5.00 pm and 3 mg an hour before bed which is still not stopping the late afternoon and evening being almost unbearable. I sleep around 4-5 hours before waking and walking the floor for half an hour before sometimes getting another hour or two.

Should I take gabapentin at a low dose as well as the ropinirole would help, or should I stop the Ropinirole to stop the augmentation. Does Gabapentin also cause augmentation? My GP here in England is trying to help me, but I think he too is still learning about this condition.

Gloria

Medical Reply

Augmentation can be very difficult and causes RLS symptoms to become more and more severe. When the augmentation is as severe as you are describing, typically the only way to treat it is by stopping the offending drug. However, stopping ropinirole will make your RLS symptoms markedly worse for a week or 2. The only way to treat that potentially retched time period is to take potent opioids which are not readily prescribed in the UK.

The only drugs that cause augmentation are the dopamine drugs (ropinirole, pramipexole, levodopa) and a painkiller called tramadol. Gabapentin does not cause augmentation but generally has modest effects for treating RLS..

Sent: Thursday, February 24, 2011 1:58 PM
Subject: Sifrol (pramipexole) and weight gain?

I am finding it hard to lose the weight gained since starting Sifrol for RLS. Will I be able to lose the weight?

Donna

Medical Reply

Weight gain occurs occasionally with pramipexole (Mirapex here in the USA and Sifrol elsewhere). Unfortunately, putting on weight is easy but taking it off is very difficult no matter what the original cause of the weight gain. There is no great answer for your dilemma other than staying on the pramipexole and watching your diet (and exercising) or changing to another class of RLS medication which may have their own separate issues.

Sent: Sunday, February 27, 2011 4:16 PM
Subject: RLS worse on Mirapex (pramipexole)?

My restless legs have really been bothering me a lot. I don't think my pills are helping. I have been taking 1 mg of pramipexole at noon and another one at bedtime. I am also taking 300 mg of gabapentin at the same times. My RLS has been bothering in the daytime now.

I am taking 1/2 of oxycodone (5-325 mg tab) between 12:00 and 1:00 and my RLS is much better. Should I be trying to get off of the other medicine for RLS and what dosage of oxycodone do you give your patients?

Betty H.

Medical Reply

You are on a very high dose of pramipexole and it is very likely that the extension of RLS symptoms to the daytime is due to augmentation caused by pramipexole. As such, the best treatment for the augmentation is to get off the pramipexole. This can be hard to do as the RLS symptoms will become markedly more severe for about 1-2 weeks before settling down to a much lower level.

We typically use opioids like oxycodone or methadone to treat this very tough transition period. The doses needed are typically up to 10 mg three times per day but of course, lower doses if effective would be even better. Once off pramipexole, most RLS patients who have had augmentation must stay away from dopamine agonists or risk the very probable likelihood that the augmentation will quickly return (and may be even worse).

At that point, most RLS patients will need to stay on a low dose of an opioid. We do not suggest your current combination drug as it contains acetaminophen (Tylenol) in addition to the oxycodone) but rather just pure oxycodone or methadone.

Sent: Tuesday, March 01, 2011 8:30 AM
Subject: Effexor and RLS

Is Effexor one of the antidepressants that will worsen RLS? I know Wellbutrin and trazodone are the ones that don't make is worse, but Effexor is said to help migraines, so I recently started taking 75 mg but am concerned about RLS I also take .5 mg of Mirapex in the evenings.

Effexor is on the list of bad RLS drugs (you can always check out our RLS Treatment Page which lists all the drugs).

Medical Reply

However, even when a drug is listed as a potential “RLS unfriendly drug” it may not affect any given individual so you may consider trying it. Just be aware that it tends to worsen RLS and be ready to discontinue it (by discussing this with your own doctor) if your RLS symptoms increase.

Sent: Saturday, March 05, 2011 1:29 PM
Subject: this daily stretch/motion has controlled my serious RLS for 12 consecutive days now

I have been afflicted with severe restless leg symptoms for about 35 years now.

Just for context, each year, I might have 3 non sequential evenings per year where, for reasons unknown, I have no symptoms. In the past few years, the symptoms have gotten worse. I no longer suffer just evenings and nights, I am also woken up with them around 7 AM, and feel symptoms on and off throughout the day if I sit. I have never tried the medications (Requip etc..as the idea of lifelong medicating does not appeal to me.)

12 days ago, like usual, I was lying in bed twisting and bending my legs around trying to get momentary relief. For some reason, I ended up on my side in a tight fetal position. Strangely, I felt some immediate relief, so I held the position, thinking I would see how long it worked, (as you know, most movements give approximately 1 minute of relief maximum).
I really tightened up my knees to my chest and that stretched and curved the back also. I held the position for about 3 minutes and the symptoms stayed away, I was so happy with even that short relief, but got tired of keeping the position, so I relaxed and figured I would do it again after a few minutes.

The miracle? When I relaxed, the relief continued, and incredibly, I fell asleep! It was only 11:45PM! I never fall asleep until the symptoms abate around 2 or 3 AM! Holding the position for approximately 2 minutes seems to give approximately 24 hours of relief! I have been doing it for 12 days, once each evening, and have eliminated the symptoms as soon as they reappear.  I have no idea why this works, as it does not stretch or twist the lower leg area (the area affected for me).

Please pass this information along to others to try. I am now telling anyone who will listen. I only wish I had discovered this while my father was alive. He also suffered so badly…
I am so glad to have found long lasting relief. I am actually scared it might stop working in time, but for now, I CAN SLEEP!! I haven’t annoyed everyone walking around and doing deep knee bends all evening while trying to watch TV!

Louise L.

Medical Reply

I do not have any explanation as to why holding the fetal position for a few minutes would afford you almost 24 hours of relief but then there are many things that we can’t explain in RLS.

The extension of symptoms throughout the day is a clear indication that your RLS was worsening so you are very fortunate to have found a technique that works for you. We will post the letter so that other may learn from your experiences but like most non-medication RLS treatments, it is most likely that few will receive your benefits.

If you do have trouble in future, rest assured that there are many different treatments that should be able to take care of your RLS symptoms.

Sent: Sunday, March 06, 2011 6:48 PM
Subject: Help for my RLS

Hi, I found your site online and have restless leg syndrome. I have been taking Lexapro, an SSRI, for 7 years for depression and anxiety. I have had RLS since I can remember (around 8 years old), but I can tell the RLS has gotten worse in the past two years--not sure whether it took its course and got worse or from the SSRI. Over the course of taking the Lexapro I have gained 100 lbs, which can be a symptom of Lexapro.

Last year I went to my psychiatrist to see if we could try a different anti depressant and anti anxiety drug that might not cause weight gain. I tried for 3 months but the anti anxiety and anti depressant drug I tried did not work well so I switched back to Lexapro. I was wondering if you've dealt with patients with a past history of SSRIs and whether it's best to try a different anti anxiety drug/anti depressant or to just deal with the symptoms of RLS with medications.

Right now I have tried both Requip (2 mg) and Mirapex (0.75 mg). The Requip made me very anxious and a little angry to the point that I felt like I was going to have an anxiety attack and/or pass out (sort of felt nauseous)--however, the RLS symptoms were so bad, that sometimes I had to just put up with the anxiety by taking the Requip. Because of the anxiety I tried the Mirapex and it still causes some anxiety and angriness but not as bad as the Requip.

If I take the Mirapex at night before bed, I can go to bed and am great. But the next day around 6:00 pm the symptoms start again at which time I have to take 0.25 mg. Again, this makes me anxious, but not as bad as with the Requip. Then, I'll take the other 0.5 mg before bed and start over again. Is this the best I can do? I'm not sure if there are other RLS meds to try or if I should go back and try again to try a different anti anxiety and anti depressant drug--but to me my mental health is more important than my RLS--although both are bad--it's just the anxiety and depression I had/have before taking the Lexapro was harder to deal with than the RLS.

Also, is there any reason I should see a neurologist? I've assumed I have RLS, as has my family doctor, since my creepy, crawly feeling in my legs is bilateral and I've had it since I was an adolescent.

Eric S.

Medical Reply

Dopamine agonists (Mirapex and Requip) are currently the drugs of choice to treat RLS as they are the only drugs approved by the FDA and the most studied drugs for this disorder. Although about 20% or more (this number is being researched to find a more accurate answer to this issue) of RLS patients develop augmentation with dopamine agonists, the majority do not experience this problem.

However, the paradigm for treating RLS is changing and the anticonvulsants may soon get equal (or better) acceptance as first line treatment for RLS.

Neither Requip or Mirapex have be shown to better at controlling PLM (and my experience using the drugs has not demonstrated one to be superior to the other).

It is certainly possible that the Lexapro is worsening your RLS but then you should have noticed an immediate improvement off the medication (unless you were taking another SSRI or SNRI instead) then worsening when back on the Lexapro. Wellbutrin is the only antidepressant which has been found to not affect RLS. Otherwise, it is likely that your RLS worsened for other reasons (other medications, increased anxiety, or natural progression).

It is difficult to say what would be the best therapy for your problem. However, combination therapy with an anticonvulsant (Lyrica or gabapentin), painkiller and even a very small dose of a dopamine agonist (this should not be taken if it causes any significant side effects at low dose) may work well for you (only trial and error with your doctor can determine what works best). Many neurologists are reasonably knowledgeable about RLS diagnosis and treatment but there is still a surprising degree of ignorance (even amongst neurologists and sleep specialists) about RLS.

A Reply from Eric

Sent: Monday, March 07, 2011 6:05 AM
Subject: Re: Help for my RLS

Thanks so much for your response at least that will give me a starting point. Is taking low doses of both Requip and Mirapex at the same time contraindicated?

Eric S.

Medical Reply

It is not contraindicated but it is rarely done. We generally like to stick with one dopamine agonist at a time as they both act upon the same receptors so are additive (and it makes it harder to figure out which drug is causing the side effects when they occur).

Sent: Thursday, March 10, 2011 9:02 PM
Subject: Don't know where to turn?

I am not sure if you are able to help me. I have had RLS since I was 15, now 41. For years everyone thought I was crazy or looking for attention. It started in my legs, went into my arms and now my bladder seems to bother me. All three things stop when I take tramadol or a stronger narcotic.

My problem is maintaining a doctor that will treat it. RLS has no known cure. It seems to get worse as I get older. Many doctors have accused me of drug seeking. I am fine as long as I can not feel the tingling. Once it starts up, I get crazy. I have also been told I was bi-polar and the RLS doesn't really exist. I was told that because my moods switch when I run out of medications. My RLS has become so difficult to treat. I only respond to tramadol and oxycodone.

I recently lost my insurance. Seeing a doctor is out of the question with what they want to charge me.. I have used the "free" clinics trying to get Tramadol, but they won't give it to me. I don't have the $125.00- $250.00 that doctors want just so I can get a script for tramadol. Tramadol is very cheap at the pharmacy. I don't know where to get help. Do you have any idea for me? I am about to check myself into a loony-toon farm. I am in tears because I can't seem to get this under control.

I have tried just about everything on the list. I usually only take Tramadol, or Tramadol ER.

Jennifer C.

Medical Reply

You have not mentioned whether you have tried the 2 drugs that are FDA approved for RLS, Mirapex and Requip (they both come in less expensive generic forms). These are the drugs that most doctors will prescribe as first line therapy for RLS. Gabapentin (generic and inexpensive) is a second choice as is Lyrica (which is much more expensive with no generic available).

Tramadol is a reasonable choice but generally only after the above drugs have been tried and failed. As tramadol is a controlled drug that can be abused, most physicians are very careful when prescribing it and will need to see you, assess you and continue to follow you to keep prescribing it. There is really no way around that issue. If you can find a free clinic that will prescribe tramadol for you (if appropriate), then that might work. Otherwise, it may be difficult for you to get the treatment that you need.

Sent: Saturday, March 12, 2011 1:30 PM
Subject: Vibration energy treatment for RLS

You or your members or readers may be interested in the possibility of bed socks with String Energy (vibration) frequency against the problem of pulling legs. (RLS symptoms)
The bed socks which have  vibration energy to give about 95% of RLS patient problems indicated by lighting.

The String Energy will move socks or leg cramps immediately reduce or even completely disappear. After the recommended acclimatization phase, you determine how long you must wear the socks. For some, a few hours before bedtime will be sufficient. However, for others it maybe necessary to wear the socks for a long time or keep them on all night.

The socks are free of chemicals will not work with magnets or other forms of external energy and are not tested on animals. The socks are completely safe to use.

www.stringenergy.com

Herman Kastermans

Sent: Saturday, March 12, 2011 9:33 PM
Subject: " wigged out" on Ambien

Hello I'm a 60 and taking Ambien for nighttime RLS and Adderall for ADD. I loved it. But now, a year on nightly Ambien, I feel perpetually unpleasant at night, seldom refreshed, and sleeping fewer hours. I am thinking of going back to opiates would you recommend that?

Tim R.

Medical Reply

It is difficult to advise you on what is the best course of treatment as there are several options which depend on several issues including ones that you have not mentioned in your letter.

Ambien does not help RLS but simply puts you to sleep so that the RLS does not then affect you (as RLS like back pain is only present while you are awake). If the Ambien is no longer working well, sometimes taking a break from it for a few weeks may be helpful. Using opioids may be helpful for that time. Other choices would include changing to a different sleeping pill such as Lunesta.

You could also treat your RLS with the FDA approved drugs of choice, Requip or Mirapex and then you might not need a sleeping pill. Other options include changing to the anticonvulsants (Lyrica or gabapentin) which may also bypass your need for sleeping pills.

Typically, opioids are preferred for short term treatment and are only used for long term treatment of RLS when all other options have failed.

Sent: Sunday, March 13, 2011 1:12 PM
Subject: Akathisia

I have been suffering from Akathisia for the past two years and do not know how much more I can endure. First it was diagnosed as anxiety, which I had severely at the time. Xanax helped considerably at first but it stopped being effective and I withdrew from that at my doctor's advice and began taking .5 mg Ativan TID. I do not feel as anxious or have panic attacks now and have tried several Akathisia drugs from a Neurologist that did not help and made me feel ill.

I was prescribed OxyContin for very severe RLS in 1998 and it is possible that I am reacting to that. I was put on a Duragesic patch for a week but did not want to do that. I am having difficulty with my speech and slurring my words at times. I am going to a pain clinic and in the process of getting injections in my spine for several bad disks, scoliosis, stenosis, kyphosis, etc, etc, etc. The OxyContin usually wears off 6 to 8 hours after I take it and I was prescribed 30 mg TID to deal with that.

Yesterday the clinic put me on 40 mg twice a day and I am doing that today. I have a book called Akathisia and Restless Legs and wondered if you had run into many people who have this and if you have any recommendations for treatment. This inner agitation is so horrible and I am becoming less active and very weak.

Connie

Medical Reply

It is difficult to advise you as you are not clear whether you actually do have a definite diagnosis of RLS (which is similar to but quite different than akathisia) and if that was an issue in the past or is still active. The other concern is your diagnosis of akathisia. This problem is almost always caused by taking psychiatric drugs in the antipsychotic category (these drugs are also called neuroleptic drugs). In fact, akathisia is often called NIA (Neuroleptic Induced Akathisia). I would suggest that you get a second opinion from a movement disorder neurologist to confirm that diagnosis.

Otherwise, it seems that you may just be suffering from general anxiety which would be better handled by a psychiatrist.

Sent: Tuesday, March 15, 2011 7:10 AM
Subject: Stress causing RLS worsening?

I recently went thru a very stressful week. And my RLS symptoms increased sharply. Can stress cause this? Is it a temporary worsening? I am taking 1.25mg Requip, and I don't want to increase the dosage if this is just a temporary thing.

Ed M.

Medical Reply

Stress often does worsen RLS and if that is the true reason for your current increase in symptoms, they should improve with the resolution of the stress issues.

A Reply from Ed

Sent: Tuesday, March 15, 2011 7:56 AM
Subject: RE: Stress causing RLS worsening?

The stress issue lasted a week and was resolved 4 days ago. The worsened symptoms continue. Perhaps that is too soon to tell?

Ed M.

Medical Reply

Although the stress situation has resolved your body's reaction to it may persist for a while. I can't say how long as this varies considerably from person to person. Typically, most patients should be better in a few weeks (but I have seen some react for months).

A Reply from Ed

Sent: Monday, March 21, 2011 6:04 AM
Subject: RE: Stress causing RLS worsening?

In the interim, I've been taking an Ambien as a supplement to the Requip.
It helps a lot. But I'm concerned about addiction to it. I'm not taking it every night; maybe 5 nights a week.

How often can I safely take it? And for how long?

Ed M.

Medical Reply

Addiction to Ambien is very uncommon (especially in patients who do not have a history of previous drug addictions). Taking it 5 days a week (even indefinitely) would make addiction almost impossible.

Sent: Wednesday, March 16, 2011 3:34 AM
Subject: RLS and Ambien CR

I am a 50 year old male 3 weeks removed from completion of proton radiation therapy for a craniopharyngioma. One of the side effects I seem to have developed from the treatments is insomnia. I was prescribed Ambien CR, 12.5 mg, and it works very well for me. However, I have read that continued long-term (more than 7-10 days) can result in addiction, and possibly drug tolerance. With this in mind, I discontinued use of the Ambien CR after about 3 weeks.

Unfortunately for me, I also have RLS. It is currently “undiagnosed,” but my Primary Care Manager believes I have it from my symptoms, and has referred me to a neurologist for diagnosis and treatment. It has gotten markedly worse since I had brain surgery the end of October for tumor biopsy. I have been trying to use melatonin instead of the Ambien CR, and have only been partially successful as some nights the RLS acts up.

The melatonin doesn’t really overcome the RLS like the Ambien CR will. If I knew in advance which nights I was going to have the problem, I would take the Ambien CR. Generally by the time I find out it is too late to take the Ambien CR because I have to get up for work the next morning.

I am on HRT (androgel, DDAVP, thyroid hormone) because the tumor damaged my pituitary gland. I also have to battle with the RLS when I travel. My wife usually drives, and I have to stop every 1-2 hours just to get out and walk around. Flying drives me nuts because there is no room to move around. My RLS doesn’t appear to be severe most of the time, just annoying enough to prevent sleep until I am too exhausted to stay awake – although I seem to be able to take afternoon naps without it bothering me.

On your website you talk about Ambien CR being a treatment for RLS, and say it is not addictive. When I see the neurologist, what treatment should I discuss – Requip, Mirapex, or something else? The Ambien CR helps at night, but won’t help with my daytime RLS when I travel.

Richard B.

Medical Reply

You should not have to see a neurologist to make the diagnosis of RLS (and it does sound like you do have RLS). It is simply made based on your symptoms fitting the 4 diagnostic criteria (see below) and your primary care doctor should be able to diagnose you quite easily.

Ambien CR (or any other sleeping pill for that matter) is not a treatment for RLS but rather a treatment for the insomnia that results from RLS. It would be similar to taking Ambien CR for back pain that prevents sleep rather than taking anti-inflammatory medications for the problem which treats it directly. Patients who can’t tolerate other medications for their RLS may benefit from a sleeping pill and therefore it is included in the general RLS treatment. Ambien CR is not really addictive (more psychologically addictive as patients may rely on it to get to sleep then feel anxious when they do not take it) but it has minimal true addictive potential. The warning that you read applies to sleeping pills in general (most of which are benzodiazepines with a significant addictive potential) and the FDA has required all sleeping pills (even the “safe ones”) to carry the warning about short term use only (except for Lunesta which has done studies for up to 1 year). In clinical practice, the long term use of Ambien CR has been very good.

The current accepted (and FDA approved) treatment for RLS of your description would be Mirapex or Requip taken about 1-3 hours before bedtime. These medications can also be taken before travel to eliminate RLS and make your trip enjoyable. Anticonvulsant medications (Lyrica, gabapentin) or opioids are reasonable alternatives. Your primary care doctor should be able to institute these treatments.

Sent: Saturday, March 19, 2011 6:26 AM
Subject: RLS and Sleepwalking

I was diagnosed with RLS in 2003. Started on Sinemet which caused daytime augmentation. I was put on Mirapex which caused the OCD gambling. Taken off Mirapex in 2010 after a series of meds were tried. Now on 8mg Requip with OCD of compulsive eating and shopping, 40 mg Baclofen, 4 mg clonazepam all which for the most part controls my RLS (except prior to menstruation). I have had 7 episodes of sleepwalking (that I am aware of) in the past 5 months.

I have severely hurt myself three times by falling on the coffee table and this week I fell flat on hardwood flooring bruising my ribs, legs, breasts and arms. Can this new symptom of sleepwalking be RLS related?

Patti

Medical Reply

Once you demonstrated ICD (Impulse Control Disorder) with Mirapex, it was probably not a good idea to go on Requip as the likelihood of a recurrence of the ICD was very high.

Clonazepam (despite what you may read) is not an RLS drug but simply puts patients to sleep. It is not the best sleeping pill (even though it does work fairly quickly) as it has a 40 hour half-life which means that it is still active during the daytime. There are much better sleeping pills such as Ambien or Lunesta. However, the real goal is to treat your RLS correctly so that you don’t need a sleeping pill.

Baclofen has no role in treating RLS. It does cause sleepiness so may be helping the clonazepam to make you fall asleep more easily (not a great reason to use it).

You should consider using the anticonvulsants (Lyrica, gabapentin) or painkillers (opioids or tramadol) to treat your RLS symptoms (discuss these with your doctor).

The sleep walking likely has nothing to do with your RLS but rather is due to taking your sleeping pill, clonazepam. Sleep walking is also more common with any sleeping pill (including Ambien, Lunesta).

A Reply from Patti

Sent: Monday, March 21, 2011 7:58 AM
Subject: Re: RLS and Sleepwalking

Thank you for your response. I appreciate the information. I have discussed other options with my neurologist and he will not prescribe any type of painkiller (not even codeine) or sleeping pill for my RLS. The only thing he will prescribe are the meds I mentioned (he uses clonazepam as a RLS med not a sleeping pill) and my family doctor said I should be "used to it by now and I shouldn't be sleeping during the day and I needed to "re-train my sleeping habits".

I was on Lyrica but found it did absolutely nothing to control my RLS. I was on Tramadol but the amount I needed to control the RLS also made me have irregular breathing and heartbeats so I couldn't use that med either.

I guess I'm pretty much stuck with the medications I am on and if I kill myself sleepwalking then I guess I won't be worrying about the RLS anymore.

Patti

Medical Reply

My best advice at this point is to find another doctor (neurologist, sleep specialist) who understands RLS treatment and sleep related drugs and who has treated many RLS patients (and thus hopefully has expertise in this area).

Lyrica works well for many (but certainly not all) RLS patients. However, it often has to be increased to reasonably high doses (like up to 300 mg).

Most doctors are reluctant to prescribe opioids for RLS even though these drugs are very effective and safe when monitored carefully. With proper treatment, almost all RLS patients can get marked improvement in their symptoms, so don’t give up.

It may be helpful to get a copy of my book for patients, RLS: Coping with your sleepless nights (profits from this book go to the RLS Foundation). You may also consider getting my book for doctors, Clinical Management of Restless Legs Syndrome to help guide your doctor on how to treat your RLS problems.

A Reply from Patti

Sent: Monday, March 21, 2011 9:15 PM
Subject: Re: RLS and Sleepwalking

Believe it or not, I asked my family doctor about seeing another neurologist for a second opinion and she stated "I don't know any other neurologists". I am now looking for a new family doctor as my present one is more interested in delivering babies than assisting me with my RLS. She doesn't even try to find out what RLS is about or its effects. I have severe depression and she won't even prescribe an anti-depressant even though I have attempted suicide several times and once came very close. No one cares. Even the "We Move" discussion group declined my request to register with their group. I have suffered nothing but rejection in my life since my RLS started and especially after trouble I caused under the influence of Mirapex.
Thank you for responding to my email. It helps to make me feel that someone cares.

Patti

Medical Reply

Please check out the RLS support groups on the RLS Foundation’s website ( www.rls.org). They will be much more understanding and if there are members who live in your area, they may be able to direct you to a doctor who can treat you.

I have never before heard of the “We Move” group rejecting RLS patients? Bring that issue up with the RLS Foundation’s support/discussion group.

A Reply from Patti

Sent: Monday, March 21, 2011 10:14 PM
Subject: Re: RLS and Sleepwalking

Thank you once again for your support. This is the email that was sent to me: I sent them an email asking why my registration was declined and yes, I will join the www.rls.org . It is hard to find other RLS people in my city. It just doesn't seem to be something that people talk about and my family doctor says I am the only person she knows who has it.

Patti

Medical Reply

10% (according to all the medical studies) of your primary care doctor’s practice has RLS (even more if she has pregnant patients as they have up to 30%). If she thinks that she only has you then she clearly is not looking, not asking the correct questions or likely just blind to RLS.

Let me know why We Move rejected you.

Sent: Tuesday, March 22, 2011 7:13 AM
Subject: Topamax and RLS

I have been on Neurontin in increasing doses for last 5 years. I take 800 mg now combined with Requip at bedtime. Works most of the time. I have to take some of bedtime med on weekend if I want to sit and watch movie or read book. I also have developed bad habit of eating at night because I am so "loopy, drunk" from meds. I actually lock my fridge and pantry to combat problem and weight gain

Is there any info about Topamax and RLS? I understand some people have lost weight as side effect.

Medical Reply

Neurontin (gabapentin) is well known to cause drowsiness/fuzziness. It does not get well/reliably absorbed so it is difficult to figure out what is actually getting into your blood stream with any dose. It might be worth trying other anticonvulsants like Topamax or Lyrica. Lyrica actually has a several good studies that demonstrate that it works well for RLS and I find that it has fewer side effects than gabapentin (although it certainly can cause drowsiness also).

There is only one article in the medical literature that studied the effect of topiramate (Topamax) use RLS (it was found to be effective and one patient out of 19 in the study did lose weight). I have used topiramate on a few RLS cases with variable success (of course, all RLS treatments tend to have variable success, especially on the tough patients that I see). The use of this drug is clearly still experimental but it is a choice (although not one of the first) for treating RLS if necessary.

Requip has been associated with impulse control disorders of which compulsive eating is one of the more common ones. Therefore, it is possible that the source of your overeating may be the Requip rather than Neurontin.

Sent: Thursday, March 24, 2011 2:06 PM
Subject: Buprenorphine/Subutex for Very Severe Case?

I have very severe, inherited RLS ( actually my sleep doctor stated, "the worst case he has seen in over 25 years of practice" ). Suffice to say, I failed dopaminergic medications after a few years, developing severe augmentation and rebound. I have tried (almost) every other drug, including the Neupro Patch (just made it worse), none of which helped. I even tried intravenous iron transfusions, to no avail.

I was eventually started on Methadone. It helped, however (and a big however), I don't tolerate Methadone very well, especially high doses enough doses to control my symptoms (15 mg per day). I have tried it on several occasions, thinking perhaps, I just needed to get used to the side effects. I just can't tolerate it. I'm like a zombie on that medication. I am currently on pure opioid agonists. I have tried them all, but find oxycodone and morphine to be most effective.

I need pretty significant doses: 60 mg. OxyContin (extended release oxycodone) every 8 hours and 15 mg oxycodone (immediate release) (up to 4 per day) for break-through symptoms, and that is barely controlling my symptoms. I can get symptoms 24 hours per day, but as usual, they are much worse at night. I do find I can tolerate 5 mg of Methadone to add to the oxycodone regimen, and that helps significantly. I should point out, I have other health problems that cause me pain as well. Regardless of the pain though, I find any less a dose and the RLS is very poorly controlled.

I do not want to spend the rest of my life on narcotic pain medication, and am considering trying to get off the narcotics, by going into a hospital for a couple days, and switching over to buprenorphine (Subutex). You need to go into withdrawal from the narcotics for several hours, before switching over to buprenorphine.
My question is, do you think I will find enough relief from buprenorphine to control RLS as severe as mine? Have you heard of any one who has successfully had adequate RLS control from either Subutex or Suboxone (buprenorphine with naloxone)?

To me it would seem a more logical alternative to those that are failing dopaminergic medications, to try buprenorphine first, before going venturing into pure opioid agonists. Subutex supposedly has a much better side effect profile, is better tolerated, and is much easier to get of off (if needed), than pure opioid agonists. It does posses significant pain relieving properties, which is why I can't understand why it hasn't been explored for RLS. I can't seem to find any information on it anywhere, being used for RLS. None of my doctors, even the RLS "specialists" seem to have any knowledge, or even anecdotal evidence of it helping.

Glenn

Medical Reply

So far, only the pure opioid agonists have been used for RLS in any significant degree. I have heard of some adverse effects of using naloxone (which is one of the 2 drugs in Suboxone) as the naloxone can block the opioid receptors producing increased RLS symptoms that then can't be treated with opioids. I would be very cautious about using that drug for RLS,

Subutex (buprenorphine) is a partial opioid agonist. I have not heard any reports of how it works for RLS but I would imagine that in your case, if the full opioid agonists are needed in such high doses (and you are on very high doses of oxycodone, much higher than I ever prescribe) then the partial agonists may not work that well.

You can let us know how you do but I think that the chances are not very high that any of the drugs that you are contemplating using to treat your RLS will help.

Furthermore, stopping the opioids will likely result in marked worsening of your RLS.

A Reply from Glenn

Coincidentally I also gathered in the very limited research I could find, that naloxone may very well exacerbate RLS, and advised my doctor I did not want to risk Suboxone, but would be willing to give Subutex (buprenorphine) a try. I wanted to try anything, if there was even a remote chance to live without being dependent on opioids. I have expressed the same feelings as you, that a partial agonist will probably not be enough to control the symptoms.

However, the doctor states the buprenorphine, even though it's only a partial agonist has significant pain relieving properties, although I don't think he understands just how devastating RLS can be. I'm still skeptical and frankly a bit worried about going through the horrible agony of withdrawal for naught, but then again you will never know unless you try. I know how bad the RLS will be if the Subutex doesn't work. I really appreciate the information and will pass it along to my doctor.

I'll keep you posted, as to what type of response I get from Subutex (buprenorphine). For those that have tried everything, and are about to jump into pure opioids agonists, perhaps Subutex (buprenorphine) may indeed be a viable first option. Perhaps more research needs to be done, before it can be recommended for RLS though. I have heard people trying to discontinue Subutex (buprenorphine), get a pretty significant flare up of RLS, whether they originally had RLS or not, so it must have some effect on those pathways.

Glenn

Sent: Friday, March 25, 2011 1:53 PM
Subject: RLS not responding to medications?


I have suffered from RLS since early teens. Over the last few years it has gotten much worse and moved up into my arms. It mostly manifests on my left side more than my right. Even on the nights I don't feel the intense sensations in my limbs, I still kick my leg(s) all night (usually hard enough to bruise my husband's leg). I have pretty bad side effects to MANY medications, including Neurontin and Ultram, which I've seen mentioned many times.

For the last 10 years (off and on) I've been on Requip 1mg once at night. The first doctor who prescribed it to me told me to take it only when the RLS was affecting me, and my new doctor told me to take it nightly regardless. My problem is due to our financial situation and lack of insurance, I can no longer afford Requip and was wondering if there was a more affordable medication. I am currently taking Lortab 7.5 mg 3x day for chronic back pain and most nights, that's enough to relieve my discomfort, but some flair ups are so intense that the Lortab has very little effect and I just cant get any sleep for feeling like I'm going to twitch myself out of my skin.

Any physical contact such as someone else touching me or fan blowing on me, even the pressure from having a blanket covering me makes the sensations go beyond being unbearable. With income in mind, what options are open to me? I also frequently get an intense ache in my calf, right leg, right side of my calf that will last for days. Is it possible this is related to my RLS?

Laura C.

Medical Reply

Your RLS problem is somewhat difficult to solve given your clinical story and financial situation. It is likely that you are experiencing augmentation from Requip (worsening of the RLS due to taking the Requip) which means that even if this drug was more affordable (and it does come in a generic pill that is cheaper), it may not be the right medication for you anyway,

Opioids work well (as you have noted already with Lortab) and are inexpensive but you already are not responding that well to that drug. You could use a more potent opioid for your RLS but you and your doctor would have to be very vigilant to avoid tolerance/dependence from occurring.

There are other drugs (such as Lyrica) but they are typically much more expensive.

The intense ache in your calf likely has nothing to do with your RLS problem.

Sent: Friday, March 25, 2011 6:31 PM
Subject: RLS after Abilify?

I appreciate your responses to all of the email you receive. My problem: I was prescribed 5mg of Abilify daily for approximately 5 months then I stopped taking the Abilify. About 7 days later I began feeling weird sensations in my trunk (chest, stomach area) that woke me up at night. About a week later it moved into my legs. The family doctor game me a 10 day sample packet of Mirapex EX. I also started back up on the Abilify. By the end of the 10 days, I felt back to normal.

I continued to take the Abilify for 8 more months. Three months ago, I stopped taking the Abilify. Several days later I got RLS again very similar to the first time. This time, I did not start taking the Abilify but was given 0.5 mg Requip at night before bed and am still taking it. I thought the RLS symptoms would soon go away but they have not. The RLS seems to get worse as time passes.

Could the Abilify have been helping me with RLS? Could the RLS be a side effect of quitting the Abilify? Would it be advantageous for me to take Abilify and see if the RLS symptoms go away?

Clint E.

Medical Reply

It is unlikely that stopping Abilify caused you RLS. Abilify often makes RLS worse but as it does have some dopaminergic properties, it actually does help some RLS patients. Of course, if you did develop RLS while on the drug, then stopping it might then worsen your RLS (but this of course means that the Abilify did not cause your RLS but as you stated it may have been helping it).

If you do have RLS then it would be better to take a medication that is meant to treat RLS (Requip). However, if you do need Abilify for other reasons, then that would be a very good choice.

Sent: Monday, March 28, 2011 7:59 AM
Subject: Mirapex withdrawal-Help

I have had RLS/PLM for the past 12 years and decided to stop using Mirapex due to increasing augmentation. At the time I was taking .375 Mirapex at 5:30 pm which would help me make it through the night. My symptoms were starting earlier and earlier in the afternoon. My doctor started by weaning me off of Mirapex (Not the best way) until I was completely off for one full month. At the end of the withdrawal I was taking 175 mg of Lyrica and 40 mg of OxyContin.

Since the symptoms were not improving (I wasn't able to decrease my med's) I ended a very exhausting and hellish time. The doctor put me on Requip while I went through the difficult process of weaning off of the Lyrica and OxyContin. At first I had no symptoms during the day and because the half life of Requip is shorter than Mirapex I ended up taking .5 mg at 5:30 and .75 mg at 9:00 pm.

Now I am having to take .5 mg at 12 pm. For the past few days I am getting symptoms earlier in the morning. I am so anxious because stopping my dopamine drugs did not work and Lyrica did not help at all. It now seems worse! Should I return to using Mirapex because of the longer half life? What are my options?

Beverly

Medical Reply

The issue now is that once augmentation occurs with one dopamine agonist, it is very likely to occur with another. Staying on Requip or switching to Mirapex will result in more augmentation and more difficulty with RLS symptoms and controlling them.

I am not sure why you did not do well with a reasonable dose of Lyrica (although some patients do need to go up to 300 mg or higher per day) and oxycodone as that should have helped most patients. You may need higher doses of Lyrica in conjunction with a more potent (and RLS specific) opioid like methadone.

A Reply from Beverly

Sent: Tuesday, March 29, 2011 10:23 AM
Subject: Mirapex withdrawal-Help

Thanks for your response. I think I would like to stay on the dopamine medication for as long as possible before adding a narcotic. What do you think about switching back to Mirapex for the longer half life and /or supplementing the dopamine medications with gabapentin?

Beverly

Medical Reply

Going back to Mirapex is likely to result in augmentation quite quickly but if you want to try it until the symptoms become intolerable that should be reasonable (although not what I would recommend to any of my patients). Taking gabapentin with Mirapex may allow you to keep the Mirapex dose lower which might delay the onset of severe augmentation.

A Reply from Beverly

Sent: Thursday, March 31, 2011 4:14 PM
Subject: Mirapex withdrawal-Help

Could I stop taking Requip and switch to .375 mg of Mirapex right away? Also, if I do add gabapentin, at what dose should I start? Thanks so much for your help. My doctor knows very little about RLS.

Beverly

Medical Reply

Mirapex is 2-4 times more potent than Requip. If you are to change over, you should replace your Requip dose with no more than ½ the mg of Mirapex (starting lower is always safer). Gabapentin is typically started at 100-300 mg up to 3 times per day but this medication has great variability in absorption, action and side effects from person to person so it is very unpredictable what dose will work for you.

Sent: Tuesday, March 29, 2011 12:31 AM
Subject: Restless Legs and exercise

I was actually very surprised to see that patients actually get diagnosed with RLS by doctors overseas. I had to diagnose myself and tell the doctor what was wrong with me. I am from Namibia (South West Africa). I almost feel that I am the only one in Namibia with this problem. I know that this is not the case but that’s how I feel. Nobody takes it seriously and it almost feels like the doctors feel a “cow”.

I had to do al my research on my own on the internet and got slammed by some of the doctors saying that I must not believe everything I read on the internet and that my symptoms was just imaginary because of what I read. I was so angry and frustrated because I have had this very annoying syndrome since I was a teenager. I am now 42 years old and I practically had to beg my doctor to prescribe Requip for me. What a relief!

I am on Requip now for approximately 4 years and taking it before bed time 4 mg or 2 mg if I have to travel or know that I need to be still for a while. Since taking the Requip my life changed for the better. I did however notice that since taking Requip and by the time it works out, the symptoms are far more intense than before I took the medication. There were a few times that the pharmacies did not have any in stock and boy was it stressful. If I do not take the medication at night I can forget about sleep. I mean like I do not sleep at all. I wander around the house, play Wii or do whatever it takes to keep me busy. I cannot even sit down to watch TV for more than 10 minutes. So now I always make sure that I have enough medication.

Is it possible that exercise can actually worsen my symptoms? I have tried to exercise, not hardcore exercises, just the normal stuff like walking or aerobics etc. This was now done all before I started taking the Requip. And the exercise just helped didly squat. I took iron supplement and magnesium supplements, you name it I’ve tried it. Nothing worked except the Requip.

Is the Requip still one of the better medication prescribed by doctors on your side of the continent? For nobody here seems to care here in Namibia.

Charlotte

Medical Reply

Requip (and its cousin dopamine agonist drug, Mirapex) are still the drugs of choice here in the USA but this may be changing in the future. As you have noticed, once on the Requip, stopping it sends your RLS into hyper-drive. Many people even get a worsening of their RLS while on the drug called augmentation. However, there is no reason to stop your Requip for now. Other medications to treat RLS include the anticonvulsants (gabapentin, Lyrica) and the painkillers (tramadol, opioids).

Mild to moderate exercise typically helps RLS while vigorous exercise (and that definition changes from person to person) tends to worsen RLS. Your response may also be unique to you as it does not sound like your exercise is that strenuous.

Sent: Thursday, March 31, 2011 8:05 AM
Subject: RLS and Hormones

I have had RLS for years. The symptoms started about 10 years ago. The only thing I could find to help the symptoms was Ibuprofen. I was taking up to 8 Ibuprofen a night when I finally went to my physician and explained my symptoms. He prescribed Requip. I started taking the recommended dose and the very first night I took it the symptoms disappeared. The strength of the Requip was causing upset stomach so I lowered the dose myself and it was still 100% effective.

I am now 51 years old. About a year and a half ago I started going through menopause. My RLS completely disappeared. I found I no longer needed the Requip. I did have major menopause symptoms, i.e., extensive hot flashes and very often. But I no longer had RLS symptoms. Truthfully I would take menopause over RLS any day! It was fantastic and I thought I was cured!

But about a week ago my hot flashes stopped and now I am beginning to have RLS symptoms again. I was so disappointed and wondered why they would be returning again after so long. The only thing I can think of is the changes in my hormone level. Have there been any studies linking hormones and RLS?

There were a lot of medications listed. Everyone should just ask for Requip. You won’t need anything else!

Medical Reply

Requip is a very good medication for RLS but unfortunately, many RLS patients have problems with Requip and the other dopamine agonist, Mirapex. These patients are clearly over-represented on our website as otherwise they would not be writing to us.

Hormones do have a significant effect on RLS in many women but as with everything dealing with RLS, there is great variability. Sometimes menopause helps RLS while other times it worsens symptoms. Many women notice marked variation of their RLS symptoms during their menstrual cycle (usually worse several days before menses). No studies on this hormonal RLS phenomenon have yet been done but this is a common observation amongst RLS specialists.

Sent: Thursday, March 31, 2011 9:12 AM
Subject: RLS and my medications?

I have had RLS for about 10 years, usually the night time episodes are brought on by things I eat or drink and some of my high blood pressure medications. Lately though they occur more often and I'm not sure why? I've been on gabapentin for 3 months and that seemed to help but now I find its not working. I use a nasal spray for stuffiness at night. Could that be contributing to the problem?

I was also using a CPAP back then too, but lost weight and return it assuming my sleep apnea was related to my excess weight. I also have degenerative disc disease and have back pain at night and during the day if I stand or walk for more than 1/2 hour, the pain shoots across from my spine to the left buttocks and down the leg to my calf and toes ( sometimes my foot is numb from the ankle down) and the pain is excruciating.

This is the leg that I have RLS in. I've always had a lot of movement in this leg during the day (bouncing my foot up and down) which I contributed to nerves as its not jerky and crawly like at night. I'm also on anti depressants ( venlafaxine) could these be making things worse? I'm so tired in the morning, I'm starting to trying going to bed earlier and earlier to no avail. I have a sleep test coming up.

Should there be questions I should be asking the doctor after? Also could artificial sweeteners cause RLS? I drink colas without caffeine and without sugar and still seem to be affect by them when I do.

Frances

Medical Reply

Nasal sprays are not known to have any effect on RLS. Some patients feel that certain foods (often carbohydrates) worsen their RLS but there is no scientific evidence that validates that link (which does not mean that it does not exist, only that it has not yet been studied). Artificial sweeteners have not been noted to affect RLS but caffeine may worsen RLS (so stay on decaffeinated drinks).

Antidepressants such as venlafaxine are well known to worsen RLS.

It may be helpful to get a copy of my book for patients, RLS: Coping with your sleepless nights (profits from this book go to the RLS Foundation). You may also consider getting my book for doctors, Clinical Management of Restless Legs Syndrome to help guide your doctor on how to treat your RLS problems.

Sent: Thursday, March 31, 2011 10:59 AM
Subject: RLS and allergies

I’m a 45 year old female that has experienced RLS symptoms for many years. Finally was diagnosed about a year ago and have been on ropinirole (Requip). It is wonderful – as long as I remember to take 3 hours prior to bedtime!

I've also experienced allergy symptoms for years. From experience, I know that antihistamines aggravate my RLS. What allergy medicines are out there without antihistamines?

Mary

Medical Reply

You can use any of the non-sedating antihistamines.

OTC – Claritin, Allegra and possibly Zyrtec.

Prescription – Clarinex, Xyzal.

Much of this info is on our Medical Alert card that can be downloaded and printed on our website.

Sent: Thursday, March 31, 2011 2:17 PM
Subject: RLS help

I have RLS and have had it for years but, it is much worse lately. I am up every night and the only thing that helps is hydrocodone and I am taking a lot more than I should. I have tried Requip but it didn't work. I have Rheumatoid Arthritis, Diabetes, fibromyalgia and High Blood Pressure, also several other minor problems. I need help.

I did see a Web page advertising AllCalm,it says it works immediately, the sole ingredient is Magnesium Sulfate. I can't find anywhere that this should work. If finances weren't an issue I would try it or anything to get help. I would sell my soul to get the money if I was sure it would work. I guess you can tell I am desperate for help.

Carol L.

Medical Reply

Don’t waste your money on AllCalm. Although there are many testimonials on the website there are absolutely no valid medical studies that demonstrate that AllCalm or magnesium in general has any beneficial effects on RLS. It is most likely that the patients who benefit from this product are responding to a placebo (sugar pill) as the placebo response in RLS is very high (but unfortunately generally does not last very long).

However, most patients do very well with proper treatment of their RLS with available medication. Unfortunately, the majority of doctors (and many of the specialists who treat more complicated RLS cases like neurologists and sleep specialists) do not have great expertise in handling RLS cases.

It may be helpful to get a copy of my book for patients, RLS: Coping with your sleepless nights (profits from this book go to the RLS Foundation). You may also consider getting my book for doctors, Clinical Management of Restless Legs Syndrome to help guide your doctor on how to treat your RLS problems.

Sent: Saturday, April 02, 2011 2:52 AM
Subject: Neurontin? 

I experienced augmentation after taking Requip for about 1 year. It worked very well at night, but I was struggling with RLS symptoms during the day and evening.  Those symptoms were gradually getting stronger.  My doctor switched me to Mirapex which was a disaster.  With that I began having RLS symptoms almost continually.  I'd participated in an RLS medication study and took Neurontin which seemed to help so talked my doctor into prescribing Neurontin.  I'm currently taking 600 mg and that has helped somewhat, but I still have RLS symptoms 2-4 times/night. 
 
Would the augmentation symptoms return if I went back to Requip? If that isn't possible, what dosage of Neurontin would work better?  Or is there something else I could try? 

You have several options to discuss with your doctor. 

1)      Increase the gabapentin up to 900-1200 mg. That may work better but there is a significant risk of next day sleepiness. As gabapentin doses are increased, less is absorbed so the increase by 300-600 mg will probably only add about 100-300 mg.

2)      Changing gabapentin to Lyrica (75 mg to 450 mg 2-3 hours before bedtime) may work better but every patient may react differently to these drugs.

3)      You could add a small dose of Requip to the gabapentin but the risk of augmentation would be very high. Some patients seem to tolerate the addition of a small dose of a dopamine agonist (Requip or Mirapex) once augmentation has occurred but most get back into trouble (and quickly).

4)      You could add an opioid (methadone, oxycodone, etc.) or tramadol at bedtime.
 

      Sent: Monday, April 04, 2011 2:23 PM
Subject: RLS medication question

Up until October 2010, I was taking 600 mg of Tegretol, 45mg of Temazepam, and 10 mg of Methadone for my RLS. My RLS was still painful and I was only sleeping about four hours.

Since then, I have a new doctor who had me try Requip. I was given this before at a 0.25 mg dosage. I now take 2 mg about 1pm, and 2mg about 10pm. I have no more RLS sensations. I do not awake from RLS sensations. It is wonderful. However, I believe I have developed chronic insomnia because I awake at 330am, 430am, 530am, 630am, etc. until I decide to get up for the day. Napping doesn't seem to work for me. I work four days a week, so there is not much time for napping anyway. I do take 2mg of Clonazepam and 1 5/500 of Vicodin at 10pm in order to help me sleep longer.

Since Vicodin is for pain, and I have none, I don't see why this would necessarily help me sleep longer. As for the the Clonazepam, I am afraid if I up the dosage I will be too groggy to wake up in morning.

Diane L.
West. St. Paul, MN

Medical Reply

      You are correct about the Vicodin. As it is a pain medication (it also helps RLS but it does not sound like you need it for that), it has no purpose being given to you for sleep. That would be a gross misuse of a potent opioid that should only be used sparingly for pain.

Clonazepam is one of my least favorite drugs for sleep. It has a 40 hour half-life which means that there is more than half of the drug left in your system when you take your next day dose. This drug is very often responsible for causing daytime sedation. Furthermore, you are a very high dose which often results in tolerance/dependence (which also is compatible with your overuse of temazepam since its maximum dose is 30 mg and you were taking 45 mg). Rather than contemplating increasing the dose the clonazepam, you might want to discuss weaning off this medication and consider a referral to a sleep specialist.

I am not sure why you are having significant insomnia despite a very potent sleeping pill but you clearly need more help than your primary care doctor is currently providing.

Your dose of Requip is also getting into the higher range which might cause problems (like augmentation of RLS symptoms) in the future.

Sent: Thursday, April 07, 2011 5:40 PM
Subject: ADHD and Mirapex?

Does taking Mirapex over a period of 2 years or more make ADHD worse? It seems since taking Mirapex my ADHD has gotten worse.

Stormy W.

There is no known link between ADHD and Mirapex. In fact, since many children with ADHD have RLS, treating them with Mirapex tends to help rather than worsen the ADHD.

Sent: Saturday, April 09, 2011 4:49 AM
Subject: Withdrawal from Requip

My husband has been taking Requip (1 tablet to 1 1/2 at bedtime) for Restless Legs Syndrome for the past five years. Prior to that he had taken Hydrocodone. My husband has noticed that his RLS symptoms have increased over the past few months: he finds he must get out of bed more often at night and the discomfort is more intense. One pill no longer does the job. The doctor advised increasing the dosage to 2 pills 3 hours before bed. (It takes 3 hours for the pill to work.)

On Thursday my husband had an appointment with a neurologist who prescribed 2-5 capsules of Gabapentin 100 mg at bedtime. At the same time, he took my husband off of Requip. My husbands has had virtually no sleep since Thursday night and his restless legs has become severe. He is exhausted.

The doctor told him it could take up to month before the Requip withdrawal systems cease meanwhile he must continue Gabapentin 100 mg. My husband feels frustrated since the doctor can give him no indication of when the Restless Legs symptoms will be manageable sufficiently to permit my husband to sleep for a few hours.

This morning he feels a bit nauseous and exhausted. Now the symptoms are occurring throughout the day. Further, his upper arm is now involved.

1) Is the increase of Restless Legs, in your opinion, due to the withdrawal from Requip or is could the Gabapentin 100 mg have cause the increase or something or problem?
2) The literature on Requip warns against stopping Requip altogether. All that I have read suggest gradual withdrawal not ceasing it entirely. What is your opinion.

Playing the guitar or walking around for 20 minutes appears to be the only temporary relief of the symptoms. Within 5-10 minutes after he has returned to bed the symptoms return.

Harried Housewife

Medical Reply

Your husband was suffering from augmentation due to taking a dopamine agonist drug (Requip). When this occurs it is necessary to discontinue the dopamine agonist as suggested by the neurologist. However, it is very predictable that the RLS will markedly worsen for several weeks as in your husband’s case.

In general, the Requip can be stopped slowly or suddenly (there is a very small incidence of dopamine agonist withdrawal syndrome but that is not very common and not what your husband is experiencing). When the Requip is stopped suddenly, a strong opioid like methadone or oxycodone is necessary to treat the worsened RLS for a few weeks.

Gabapentin is not sufficient when stopping Requip but can be added later. It should be started at a low dose then increased slowly until effective (or when side effects like drowsiness occur). The opioid can then be decreased or eliminated. A new drug, Horizant just got approved. It is similar to gabapentin but works better.

Sent: Sunday, April 10, 2011 3:56 AM
Subject: Chemo & RLS?

They now want to put me on Tamoxifen. I was wondering if that would cause problems.

I know you said none of the cancer treatments I've received so far would aggravate my RLS, but I can tell you that it is much, much worse than ever.

Dale

There is no known link between Tamoxifen and RLS. However, it is certainly possible that Tamoxifen or any of the other chemotherapy drugs could worsen your RLS (it only means that this is not a trend that is known to occur).

It is also possible that the stress of going through chemotherapy might be responsible for your increased RLS symptoms.

Sent: Wednesday, April 13, 2011 4:29 PM
Subject: RLS and acupuncture, alcohol?

My 75 year old husband suffers with restless leg syndrome and takes 4 milligrams of ropinirole every evening an hour before bedtime. He is very active; going to the gym five days a week, working out for an hour on the elliptical machine and then weights, push ups, etc., does all our yard work. He is fine during the day but almost like clockwork his legs start acting up in the evening around 7 pm and lasts for three hours or more. Some nights are worse than others.

We were wondering if acupuncture has ever been used for restless leg syndrome. Are there other medications that might work better than ropinirole or can he take more than four milligrams of ropinirole. One doctor said four milligrams was the limit. Also, does alcohol exacerbate
the symptoms?

Joan S.

Acupuncture has no known benefit for RLS. Alcohol does exacerbate RLS in many patients.

Ropinirole does have a maximum recommended dose of 4 mg which could be exceeded (in special circumstances when prescribed by an RLS expert) but this is really not generally advisable. He should speak to his doctor about taking the ropinirole at 6 pm so that it becomes active at 7 pm when his RLS symptoms act up. This may work by itself but as ropinirole typically works for only 6-8 hours, he may experience RLS symptoms if he wakes up at night. In that case, he may benefit from an additional dose taken right at bedtime.

However, if he has noticed that his RLS symptoms are occurring earlier in the day since he started taking ropinirole (this is called augmentation), then it might be better to change to an anticonvulsant (Horizant, Lyrica, gabapentin) or an painkiller (opioid or tramadol).

Sent: Thursday, April 14, 2011 2:50 PM
Subject: RLS & hydroxyzine

Someone just prescribed hydroxyzine for me to help me sleep. When I look it up, I see it is also an antihistamine. Since I have a very bad case of RLS and know of no other antihistamines I can take since they make my RLS worse, I am afraid of even trying it. Do you think it would be a problem for me like the other antihistamines?

Irene

The problem is that all the sedating antihistamines like hydroxyzine tend to worsen RLS (typically they make RLS markedly worse). The non-sedating ones (that do not cross the blood brain barrier) like Claritin help nasal symptoms but of course will not help you sleep.

If you need medication to help you sleep, discuss using Ambien or Lunesta with your doctor.

Sent: Thursday, April 14, 2011 8:53 PM
Subject: sleep maintenance drugs

I have had RLS for two decades (I am now 49 years old). I am currently taking 1 mg of Requip twice a day. While this seems to control my RLS symptoms fairly well, nausea is a major problem. I also take Klonopin 0.5 mg 1-2 tablets twice a day for a total of four tablets. While that has helped with the RLS symptoms, and anxiety I still have trouble staying asleep for more than four hours, even with Ambien 10 mg and the Klonopin.

Are there any sleeping pills that would help me to sleep longer? I'd be happy with six or seven hours. I asked my neurologist about Ambien CR, hoping that it would increase the amount of sleep I am getting.

I've heard a lot about the new drug Silenor. It's supposed to improve sleep maintenance, but I am worried about that because Silenor is basically low dose Doxepin. That worries me because my RLS symptoms seemed to start shortly after I started taking doxepin (Sinequan) for anxiety years ago, and the RLS didn't stop once I stopped taking the Doxepin.

Silenor sounds good in that it improves sleep maintenance but I would be too scared to take it.  Do you think Lunesta would allow me to sleep longer without worsening of my RLS symptoms the way Silenor would?

Patty
Buffalo, NY

The issue that you have is that you have already flooded your benzodiazepine receptors with Klonopin. Ambien works on the same benzodiazepine receptor (but more specifically on the benzo 1 receptor, while Klonopin works on all 3 of the benzo receptors). Therefore, adding Ambien to Klonopin is just like taking more Klonopin (not a good idea). This will only lead to needing more and more Klonopin (which is just one of the many reasons why it is one of my least favorite drugs).

You are quite correct about Silenor in that it is just a much lower dose of doxepin (3 or 6 mg of the previously available 25-75 mg dose). However, it has a very high tendency (as you have already found out) to worsen RLS. Lunesta (does not worsen RLS) is somewhat similar to Ambien that it acts selectively on the benzo 1 receptor (although it does have more of the benzo 2, 3 action than Ambien but not near as much as Klonopin) so is also not recommended.

Another choice might be trazodone but that may cause next day sedation and tolerance does occur.

Taking Requip with food may markedly decrease the nausea but it does delay the onset by an hour or so (so just take it earlier).

My recommendation (which you will not like) to discuss with your doctor would be to slowly wean off Klonopin and start over again with Ambien CR or Lunesta.

Sent: Monday, April 18, 2011 6:56 AM
Subject: RLS and Neurontin

I have had RLS since I have been a teenager, I am now 46. I have suffered from Arnold Chiari Malformation Type I, trigeminal neuralgia, and occipital neuralgia - I have had 4 craniotomies to address these issues. I have read that there is a correlation between Chiari and RLS, but all of the anti-seizure and pain meds. that I have been on over the past 7 years has really helped my RLS.

I am now drug free in regards to my cranial issues so unfortunately my RLS has come back with a vengeance I tried Mirapex and Requip but they made me extremely sick to my stomach all day long. I am now taking 600mg. of Neurontin 2 hours before bed. I have found that I am tired all day and become very dizzy after I eat. I know the effects of anti-seizure medications but can this low dosage cause the symptoms I am experiencing?

Deanna K.

Neurontin (gabapentin) at 600 mg is not a low dose but rather a medium dose (it can be taken up to about 1200 mg per dose). It is not uncommon for this medication to cause fatigue/sleepiness even during the next day.

Lyrica may be a better choice and Horizant (a better form of gabapentin) will be available in about 2-3 months and may also be better.

Painkillers (tramadol or opioids) are another choice.

You can decrease the nausea with Mirapex and Requip by taking them with food.

Sent: Wednesday, April 20, 2011 9:17 AM
Subject: RLS Question

I was diagnosed with RLS about 30 years ago. We’ve tried Klonopin, Ambien, Requip and Mirapex etc. I found myself too sedated to function at my job as an accountant. As the years went by I began to suspect that this feeling was actually originating in my lower back. Have there been any studies on misdiagnosed RLS that was actually caused by nerve damage in the lower back and/or tailbone?

About five years ago I had a sleep study performed and was instructed to take my Klonopin which was 2 mg at that time. The study indicated that I had mild RLS. Wouldn’t it have been better to not have me take the medication during the study? Currently I’ve been attempting to treat it by taking magnesium, calcium and potassium with limited results. Any thoughts?

Christina H.

RLS is a clinical diagnosis made by seeing if you fulfill the 4 RLS diagnostic criteria. A sleep study cannot diagnose RLS but only find that you have PLM (Periodic Limb Movements) which are very common in RLS patients but occur very frequently in patients without RLS (therefore, PLM are clearly not diagnostic for RLS).

Klonopin is used incorrectly by many doctors for RLS and PLM. It is my least favorite drug for RLS (you can read the many letters as to why but you already know about the daytime sleepiness problems). Magnesium, calcium and potassium have not been shown to help RLS.

If you do have RLS, you may want to consider Lyrica, gabapentin (or the new variant of this drug called Horizant that just got FDA approved for RLS) or painkillers (opioids or tramadol).

Yes, my mistake, it was PLM that they said was mild. I do meet all four, unfortunately. I’ve had some success with the magnesium etc. Maybe I needed them anyway. I’ll ask my doctor about the Horizant.

Christina H.

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 95.
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