Patient letters on RLS symptoms and remedies- Page 110

 

Kicking RLS/PLMD Patient



Sent: Sunday, February 01, 2015 6:45 AM
Subject: Panic attacks/Mirapex/Ambien

I'd desperation I write not even knowing if this email still exists. I have been taking Mirapex for RLS and Ambien for insomnia and both are helping my symptoms. I ran out Mirapex for a couple of days and on a Friday night I decided not to take my Ambien because it wasn't a work day. By 1 am I hadn't fallen asleep and began to worry about it putting myself in a panic attack. Paramedics checked me out fine.

I have been taking Ambien every night for the past five days and only sporadically over the past couple months. Last night (I week later) I took Mirapex and no Ambien and was on the verge of another panic attack and felt like I didn't sleep at all. This mornings chest feels tight. Both meds are working but I honestly don't want to take either after reading side effects. I have never had these panic attack, racing heart feeling prior to getting on them. Ambien dosage is 5 mg and pramipexole is .25 mg. I am a worrier naturally and I can't shut my mind off at night. I was taking a small dosage of doxipen before being put on Ambien but that didn't help me stay asleep.

 Is there a more natural cure for RLS? I really worry about this new panicky racing heart thing at night. I am 39.

Carrie M.

Medical Reply

All medications carry potential side effects. Your current treatment sounds reasonable however you may be both psychologically and physically dependant on the Ambien. There are other choices to replace that drug but most of them (that are not in the same class of drug as Ambien) tend to make RLS worse (like doxepin).

There are no natural treatments that would be able to replace both those drugs successfully. For most patients, stopping Mirapex tends to be very difficult and often requires another potent RLS medication.

However, there are a few treatments to consider. The Relaxis vibration pad can help RLS symptoms and sleep and may reduce your need for medication. Iron therapy for patients with low iron levels (ferritin below 50-75) may be helpful. Cognitive Behavior Therapy (CBT) can be very helpful to reduce or eliminate medication treatments of insomnia.


Sent: Sunday, February 01, 2015 4:57 PM
Subject: Getting off Mirapex?

I am on Mirapex 0.25 mg for approx. 5 years. Have gained weight and other side affects. I have been reading how bad Mirapex is, especially if you augment. And how devastating it is to withdrawal from it. I have no neurologist, hard to find in my area,. My family doctor is very understanding, but doesn't know much about WED/RLS. I would like to ask him to help me stop the Mirapex.

What would be the best way to approach him and is there any information that I could give to him that would help him, help me. I was reading on RLS Sucks.com about how everyone is having these terrible side affects and trying to get off Mirapex.

Betty B.

Medical Reply

Getting off Mirapex can be very difficult. RLS symptoms typically get markedly worse for several weeks when stopping a dopamine agonist like Mirapex. If you do get through that period, you will still need another medication such as Horizant to treat your RLS. Attempting the stop the Mirapex without a doctor who is knowledgeable in treating difficult RLS cases will likely result in considerable trouble and misery. I would advise you to proceed with caution attempting this without a very good RLS doctor to guide this management.


Sent: Monday, February 02, 2015 7:41 PM
Subject: RLS and oxycodone and hot flushing

I am writing on behalf of my husband who is 83 and developed a severe case of restless leg syndrome about a year ago after a shoulder replacement operation. (We still cannot fathom how the operation would have brought on restless leg syndrome attacks.) He finally received relief from the 3 mg Neupro patch until augmentation came on like gangbusters! His neurologist has since prescribed oxycodone. He is taking 10 mg three times a day, and this has helped him enormously for the last month. Initially, he was bothered by itching but that has subsided. However he has now developed hot flushing followed by the chills. He has had a battery of tests checking for infections, and nothing has been found. All in all, he is in good shape. He works out at the gym daily, eats well and is at a healthy weight and leads a healthy life style.

One other odd thing happened this week with the oxycodone. He had been taking 2 5mg instead of 1 10 mg (three times a day). When he switched to the 10 mg four days ago, he started getting attacks, nothing very severe and not long-lasting and only once a day , but definitely an attack which he had thought had gotten under control. These attacks take a lot out of him physically and psychologically.

My first question is: could this flushing be caused by the oxycodone?
My second question: is a total of 30 mg of oxycodone daily a reasonable amount?
My third question: will the oxycodone continue working or does it lose its potency? I have heard that augmentation is not an issue of concern.
My fourth question: Do two 5 mg tablets act differently than one 10 mg tablet? (My husband is very sensitive to medication.)

Lucy G.

Medical Reply

Oxycodone rarely causes flushing but that can happen. A change to another opioid (like methadone which I find works even better for most RLS patients) might help prove whether oxycodone is the culprit.

Oxycodone at 30 mg is on the higher end of opioid treatment but still within reasonable limits (although I might decrease the upper limit due to your husbandís age). I often have my patients use less oxycodone during the daytime compared to the evening/nighttime since patients are more active during the daytime (and RLS is worse in the evening) so should need less opioid treatment during the daytime. He should be able to significantly reduce his oxycodone when performing activities in the daytime such as shopping, going for walks, going to the gym, etc.

It is very unusual for opioids to lose potency as long as the dose is kept within reasonable limits so that tolerance does not occur.

Two 5 mg tablets should be equal to one 10 mg tablet in every way. The only possible difference might occur if the tablets are from different generic manufacturers and might then have somewhat different potencies.

A Reply from Lucy

Sent: Wednesday, February 04, 2015 10:42 PM
Subject: Re: RE: RLS and oxycodone and hot flushing

Are there any advantages to switching to methadone rather than oxycodone? I think my husband is handling the oxycodone quite well for the moment except for the flushing (which no one seems to know for sure if this is caused by the oxycodone) and being a little sleepy or groggy. If there are fewer side effects with methadone, perhaps he should talk to his doctor. What do you think?

Lucy G.

Medical Reply

Methadone is my preferred opioid for RLS patients since it seems to work better to relieve symptoms and lasts longer (8-10 hours compared to 4-6 hours for oxycodone) than oxycodone. It is a little more potent than oxycodone but may have fewer side effects in my RLS patient population.

However, most doctors do not prescribe much methadone (if at all) and are much less familiar with using this medication. Therefore, it is much less likely that you will get a prescription for methadone from your doctor (which is reasonable as doctors should not prescribe medications that they are not familiar and comfortable enough to prescribe).

If the flushing is not that significant, he certainly can stay on the oxycodone unless there are compelling reasons otherwise for him to switch.

A Reply from Lucy

Sent: Thursday, February 12, 2015 11:58 AM
Subject: FW: RLS and oxycodone and hot flushing

My husband has reduced his morning oxycodone re your suggestion to 5 mg in the morning so he is now at 25 mg for the day. He takes 5 mg early in the morning (this lasts him about 10 hours) , then 10 mg around 4 PM and then 10 mg around midnight. This has really alleviated the RLS.

One question: Should he try to further reduce the afternoon or night dose? His doctor here said that long-term, steady use of oxycodone where the patient does not experience the RLS symptoms can eventually lead to the disappearance of RLS. I have never heard that. Could this be true?

One other thing: I mentioned previously that my husband (who is 83) has hot flashings and then chills. Blood work revealed he has near-zero levels of testosterone and elevated levels of prolactin. Could this be related to the use of oxycodone? There is the possibility that this is due to something else he had many years ago, but I am wondering if you have seen anything like this in your patients who are taking oxycodone?

Lucy G.

Medical Reply

The goal is to keep trying to decrease the dose of methadone until symptoms prevent any further decreases. I suggest cutting down by 2.5 mg (1/2 of 5 mg tablet) at a time which decreases the increase in RLS symptoms when getting below the minimum methadone needed to relieve symptoms.

The steady use of oxycodone does not lead to a disappearance of RLS symptoms. However, spontaneous remissions may occur in any RLS patient occasionally.

I have never seen or heard of oxycodone causing changes in testosterone or prolactin levels.

A Reply from Lucy

Sent: Saturday, March 21, 2015 9:11 PM
Subject: Oxycodone dosage

My husband, who is 83 and suffers from severe RLS, has been on oxycodone, and it has been very effective. He started out at about 30 mg and is now down to 17.25. He tried to get down to 15 mg but his RLS started popping up again. He now takes 5 mg in the morning, 5 mg around 4:00 and then 7.25 mg around 11 pmÖtotal of 17.25. He tried reducing the a.m. dose to 2.5 mg and he did fine and it held him until his 5 mg afternoon dose without a problem. Then he would take the late evening 7.25 mg. However, just by reducing the morning dose, his symptoms would appear around 3 a.m. in the morning even though he was not bothered during the day having reduced to 2.5 mg. We are assuming that no matter how he divides it, he is not able to get below 17.25.

My questions:

1. Is 17.25 mg a reasonable dosage?

2. Do you think that he could lower his dosage if we played around a bit with the timing of when he took the oxycodone? Or do you think he might just need 17.25 no matter when he took it? I sort of think he might just need 17.25 mg no matter how he cuts it? Does that make sense?

Lucy G.

Medical Reply

I am not sure why reducing the early in the day dose would cause the RLS to be active at 3 am. Oxycodone typically lasts only 4-6 hours so doses taken in the morning should have no effect many hours later. It is possible that your husband has a very slow metabolism of oxycodone and this might result in a much longer action thus effecting RLS very much after taking the dose but that would be a very unusual situation. Furthermore, his need to take oxycodone 3 times per day supports the 5 hour action of this drug for your husband.

I often encourage my patients to not take morning doses (or even afternoon doses) when they are going to be active (such as shopping, going to an amusement park or other ambulatory activities) since they do not need medication when they are moving. I have almost never seen problems occur later in the day when these patients skip their earlier dose in those situations. Therefore, it is difficult to say that you husband could not decrease his total dose and it may be worthwhile to keep trying.

Another way to decrease the opioid dose is to add an alpha-2-delta drugs like Horizant, Lyrica or gabapentin.

As far as his dose of 17.5 mg, that is somewhat of an average to mildly high dose. I try to keep the maximum dose at 30 mg (occasionally up to 40 mg in very severe cases).

A Reply from Lucy

Sent: Monday, March 23, 2015 10:01 AM
Subject: RE: oxycodone dosage

Should my husband take oxycodone prophylactically or on a needs basis?

And if on a needs basis around 2 or 3 a.m., I assume he should start with a lower dose (maybe 2.5 to 5 mg) and see how that goesÖand take more if it isnít helping.

You mentioned he probably doesnít need anything during the day which seems to be true. He usually takes 2.5 around 8 a.m. (with no symptoms present at that time) and no symptoms all day, but he will take another dose around 3:30 just in case. However, yesterday he didnít take the afternoon dose but while sitting in the movies yesterday, he had to take 2.5 mg around 4 pm as he felt something coming on. And it went away quickly upon taking the oxy. I would say that he might be able to go all day with no oxy as long as he is active (ie not sitting in a movie). His real troubled time is around 2 or 3 a.m. in the morning. Should he just take a 5 mg or 10 mg when he is awakened by an attack? Or before he goes to sleep around midnight? He might be up for 30-40 minutes (at the most) waiting for it to kick in, but at least he has greater control over the amount he is taking and it is more targeted. I know he has to be careful as to not reduce too quickly as he had some withdrawal issues when trying to reduce by 20% earlier this year.

I also assume that if he knows he will be seated for a whileÖfor example on a plane or in a movieÖhe should take a dose beforehand no matter what time of day.

Lucy G.

Medical Reply

Most patients have to decide by trial and error if they need medication at certain (especially earlier) times in the day. This may of course vary considerably depending upon whether the patient will be sedentary or not. Most patients will take their opioid medication 30-60 minutes before these sedentary activities. In general, it is easier (takes less medication) to prevent the onset of RLS than to relieve an attack once it is active. Therefore, patients must try to work out the usual onset times of RLS (such as when watching TV at 7 pm) and take the medication before symptoms occur.

If patients are consistently waking up at 2-3 am (which often happens due to the short-acting action of oxycodone which is only 4-6 hours) then taking an additional dose (the strength of that dose must be determined by trial and error starting with the lowest dose) can be very helpful.


Sent: Friday, February 13, 2015 1:18 AM
Subject: Zantac worsening RLS?

I have had some worsening of my restless leg lately and wonder if it has to do with Zantac. My doctor had me switch from Tagamet to Zantac and double the dose to try and help my nausea and burping at night. It seems that is was a little worse and got much worse when I tried taking 2 pills. I take .25 of Mirapex and am considering upping it tonight to overcome the severe symptoms right now.

Anyone else have this reaction to Zantac? Is Tagamet any better?

Kathy B.

Medical Reply

Zantac is not known to cause worsening of RLS. It may be that you are developing augmentation (a worsening of RLS from taking Mirapex) in which case increasing the Mirapex dose will provide temporary relief but will ultimately worsen your RLS symptoms (requiring more and more Mirapex).


Sent: Saturday, February 14, 2015 8:47 PM
Subject: Restless Leg Syndrome and body shaking at night?

I have severe RLS. I use a Neupro 3 mg patch, Mirapex, and Klonopin. My spouse tells me that my complete body shakes. Often the blankets are kicked onto the floor. I am sometimes awaken and use Ben-Gay or the massager and move to another bed.

I limit my sugar intake as have found this seems to irritate the situation. Do you have any suggestions for me?

Rich M.

Medical Reply

Typically we donít combine Mirapex and the Neupro patch especially as you have already reached the highest recommended dose of Neupro already (both drugs act on the dopamine receptors). It is quite likely that likely that you may have developed augmentation (a worsening of RLS from taking dopamine agonists) and may need quite different treatment to resolve that issue.

However, the shaking of your body might be due to PLM (Periodic Limb Movements) which are very common in RLS patients. They typically bother the bed partner but may have little impact on the patient who is kicking.



Sent: Sunday, February 15, 2015 5:32 AM
Subject: Sugar for sleep?

I eat a Milky Way or other high sugar food at 3am rather than another Requip. Calms me down quickly, helps me get back to sleep most, not all, of the time. Other RLS patients have this experience? Make any scientific sense?

 Alan G.

Medical Reply

There are almost no anecdotal reports of patients getting better with eating high sugar foods. However, many patients have found that their RLS symptoms may worsen with high carbohydrate foods (especially refined ones).


Sent: Sunday, February 15, 2015 9:58 AM
Subject: Restless legs treatment for children?

My daughter is 7 and has just developed what we think is RLS. When she lays down at night she says she has to move her legs. We have to get up and walk. She cannot go to sleep at night. She is so tired during the day and cannot focus on her school work. When she does go to sleep she her legs twitch. Our pediatrician said this was restless leg syndrome. Her iron ferritin was 21 which he said was a considered normal but a little low.

We put her on a multi vitamin but the iron is hurting her stomach. We need help. What can we do to help our daughter sleep at night? We have tried stretching exercises, putting her legs under cold water, and rubbing her legs and feet. Melatonin works sometimes.

What is safe for children at this age? This is so new to us any help would be appreciated!!!!

Kasey

Medical Reply

Unfortunately, no studies have ever been performed to determine the most effective safe therapy for children. Based on clinical experience, most RLS specialist use low dose gabapentin (starting as low as 25-50 mg taken 1-3 hours before bedtime) to treat children with RLS. The dose may be increased every week or so (only if necessary) until the lowest dose that relieves RLS symptoms are found.

Another non-drug choice would be the Relaxis vibration pad which has been FDA approved for adults with RLS to get better sleep but should work equally well for children.


Sent: Sunday, February 15, 2015 11:28 AM
Subject: Pregabalin/Lyrica sedation?

Your website is an excellent source of information and helps give some hope to those suffering with restless leg syndrome and daily fatigue. I have been tapering off clonazepam for approximately a year now and started taking pregabalin instead. This has been very tough however I have had some level of success.

I wanted clarification on what you mean by "sedation may be a significant problem". I take it at nighttime for periodic limb movement disorder. Is the sedation same day, next day or both?

James C.

Medical Reply

Patients who take Lyrica/pregabalin for disorders such as shingles pain or fibromyalgia will often need 2-3 doses per day. Sedation is much more common in those patients since the sedation effect is maximal about 1-4 hours after taking the pill and both the positive and negative (side effects such as sleepiness) are gone after about 8 hours.

For RLS patients who may take the medication 1-3 hours before bedtime, the maximum sedation typically occurs while they are asleep (which is a good thing as it will help problems with insomnia which are very common in RLS patients). However with higher doses (up to 300 mg) and for patients who metabolize the drug more slowly (so there may be significant drug levels and side effects present over 8 hours after taking the drug), next morning (and possibly even afternoon) sleepiness side effects are possible.


Sent: Monday, February 16, 2015 5:06 PM
Subject: Neupro at high doses not helping?

After having augmentation with ropinirole, my neurologist suggested I go on the Neupro patch. That had been working fairly well. However, now I am again getting augmentation. I used to get relief with a 4 mg patch and 0.5 mg ropinirole at night. I'm also taking 1.0 mg of mirtazapine to sleep. After a few months, I needed to overlap patches to get an extra boost. Now, even that doesn't let me sleep.

Until last night when I put on two 3 mg patches = 6 mg, I hadn't slept more than 2-3 hours in three weeks. It seems that if I switch to a 6 mg patch, I will have more problems withdrawing. Is that true? The RLS symptoms are not terrible, but bad enough not to allow me to sleep. I need to sleep, but I don't want to go through hell when I withdraw either.

Karen T.

Medical Reply

We try to keep the dose of Neupro at a maximum of 3 mg as augmentation starts to be more of an issue at higher doses. Since you already experiencing augmentation symptoms (needing more dopamine medication to treat your symptoms), you are already there. Taking more Neupro will provide temporary relief but will make the augmentation worse. It will make it a somewhat tougher to get off the Neupro but if you have no other current alternatives to help you sleep, then you may have to resort to less optimal treatments until we can institute correct therapy.

We also do not combine ropinirole and Neupro together except when changing over from ropinirole to Neupro until we find the optimal dose of Neupro. Mirtazapine typically worsens RLS.


Sent: Thursday, February 19, 2015 10:54 AM
Subject: Problems with high doses of ropinirole/Requip not helping RLS

My name is Steve. I am 57 and have had RLS/PLMD for 20 years now. Actually had it as a kid on days of high excitement, such as Christmas Eve. Then it seemed to disappear about when puberty started. It came back 20 years ago after a visit to a hospital for a coronary artery stent and has been there every night since. I was somewhat controlled with Mirapex, but the nightmares and insomnia were about as bad as the condition itself.

I have been taking ropinirole for maybe 15 years and it has been a real gift. But now I am up to 7 mg and climbing, and the evening augmentation is driving me insane. No longer is it an urge to move either. I can be wide awake standing up and have the jerks...every 20 seconds, let alone there seems to be a severe form of fatigue that comes with it, making it even worse.
I have seen your name mentioned on the RLS support groups over the years and just ran into this email address at the RLS foundation.

I am at my wits end. Can you help?

Steve

Medical Reply

From your description, it sounds like you are suffering from augmentation due to taking Requip. Taking more Requip will temporarily help your symptoms but will ultimately add "fuel to the fire" of the augmentation process (as you have already noticed).

Most RLS specialist will recommend getting completely off all short-acting dopamine agonists (Requip or Mirapex). However, when stopping the dopamine agonist, RLS symptoms get markedly worse for several weeks. Treating this transition period takes quite a bit of expertise and should be done by a doctor who has lots of experience treating augmentation.


Sent: Friday, February 20, 2015 9:44 AM
Subject: Help me get some sleep!

I am 69 years old and have had periodic limb movements for over 25 years. One of my legs will give a jerk about every 15 seconds, when I am resting. Typically my symptoms start in the evening and are at the worst when I try to sleep. I also have sleep apnea, which is being treated with an auto BiPAP machine.

Until very recently, my doctor had me on ever increasing doses of Mirapex ER. I was taking a total of 4.5 mg. daily. I was also taking 2700 mg. of gabapentin daily, split into 3 doses. I had to stop the Mirapex because of a nasty side effect-compulsive behaviors. We canít find anything to replace it. Iím still taking the gabapentin, and in addition I am taking Lyrica 300 mg/day, split into two doses. And I still canít get a good nightís sleep. We tried adding Tramadol, but it didnít help.

Last week, the doctor added 10 mg of oxycodone at bedtime. That helped for about two of the nights, but the other nights have been between bad and awful. One night I was up until 4 am with my leg jumping the entire time. Last night I was awake, with leg movements, for 2 hours after taking my nightly mix of 900 mg. of gabapentin, 150 mg. of Lyrica, and 10 mg. of Oxycodone. Iím going to see my doctor next week, but he seems to be out of ideas. Any suggestions to help me get some sleep on a regular basis?

Allen S.

Medical Reply

Your problem with PLMD is somewhat unusual. Typically, most patients who have PLM while awake also have RLS. You do not say if you are taking other medications (especially antidepressants) that worsen RLS and PLM.

Also, you are on a very high dose of gabapentin (most patients donít absorb doses above 600 mg very well) and we rarely (if ever) combine it with Lyrica that acts upon the same receptors.

Your dose of Mirapex ER was very high Ė we normally do not use Mirapex over .5 - .75 mg daily. Doses that high are very often associated with augmentation of RLS (worsening of RLS from taking a dopamine drug like Mirapex) and a similar problem can occur with PLM. Stopping the dopamine drug (Mirapex in your case) typically causes a marked worsening in the RLS or PLM for several weeks or months. It is possible that after several weeks or months, your problem might get better.

However, you might need to seek out more expert help/consultation for your PLM treatment.

A Reply from Allen

Sent: Sunday, February 22, 2015 5:51 PM
Subject: RE: Help me get some sleep!

To clarify: my only non-RLS medication is a daily dose of 50 mcg. Levothyroxin. Regarding augmentation, I started on a low dose of Mirapex over 17 years ago, and ratcheted up to the 4.5 mg. that I mentioned. The high doses of gabapentin were intended to prevent augmentation.

Allen S.

Medical Reply

It is quite reasonable to add gabapentin in order to prevent augmentation. However, in your case, that was clearly not successful especially considering the very high doses of Mirapex that you are currently taking.


Sent: Monday, February 23, 2015 4:55 AM
Subject: RLS at 67

As a long time RLS sufferer (twenty years now), this has been my experience:

Psychologically, RLS can and has been devastating. Having been on Requip, Mirapex, Klonopin, clonazepam, trazodone, Ambien and God knows what else, the RLS got so bad a week ago, I thought of suicide (as do many sufferers).

Mirapex usage after twelve years began to produce symptoms such as throat closing when I needed to swallow food or liquids, constant dizziness, blurred vision and stomach problems. A long story short, I have been educating my doctor on the malady. He doesn't have a clue, but is learning along with me. I suggested I return to using Requip. He prescribed using 2 tablets before bedtime, after using one for five days. So far, so good. However, after about 6 hours of decent rest last night, I wake up with slight symptoms. I'll take the six hours!

Most doctors don't have a clue about RLS. They want to prescribe antidepressants which counteract the RLS meds. Antidepressants are about serotonin. RLS drugs cause depression, especially Mirapex and, especially gabapentin or Horizant. And when adding something like Ambien to the pile, havoc breaks loose.

As an adjunct to antidepressants, I swim...A LOT. Six years ago I became a Master Swimmer and compete in meets and open water swims. It has been a psychological life-saver for this RLS malady; especially the long-distance swims. It doesn't take away the illness. But, the depression lessens immensely.

I have had to find ways, like most of us, to adjust to this disease. I decided to not let it ruin my life.

Jody K.

Medical Reply

You may want to be very careful with using Requip to treat your RLS. It is very similar to Mirapex and thus presents a relatively high risk of causing the same problems. There are other types of treatment available that may avoid the risks of using short-acting dopamine agonists (Mirapex and Requip). After a few weeks or longer of using Requip, you will find it very hard to stop this medication.

You may want to seek the help of an experienced RLS expert as most patients can achieve excellent relief of symptoms (without significant side effects) with proper care.


Sent: Tuesday, February 24, 2015 5:24 PM
Subject: RLS and Abilify

I recently developed RLS. I had been on Abilify (15 mg) for two years, along with other medication, and went off the Abilify sometime in December 2014. By the last day of the year I had very bad symptoms in my legs and left arm. My neurologist prescribed 2 mg of Abilify and luckily it worked. All discomfort is gone. My question to you is, could the Abilify have both caused and cured the RLS?

Or is it more likely that I coincidentally developed the RLS during the course of taking Abilify and that it had been "treating" the RLS all along?

Beth

Medical Reply

It is difficult to be certain that Abilify helped your RLS and the only way to be sure would be for you stop the Abilify again and see if your symptoms get worse then better again with restarting the drug (which is something that you most probably should not do).

However, Abilify is known to have some dopaminergic properties and thus some RLS patients have noted that it helps their RLS. But other RLS patients have not noted this improvement and some even worsen with Abilify.

My guess is that you did develop RLS while on the drug and then worsened when it was withdrawn.


Sent: Saturday, February 28, 2015 5:17 PM
Subject: Requesting RLS Suggestions

 I have had RLS for many years. Years ago I was on Sinemet which worked well until it caused rebound. I was then on Mirapex which worked well but my neurologist took me off it because I am having auditory hallucinations (I hear music that isn't there) possibly as a result of depression and the Mirapex might be an aggravating factor. I take Celexa and Wellbutrin for depression. I am now on Neurontin 2100mg/day which is not helping, at least not yet.

I have added Percocet 5/325. I take Tegretol 400 mg/day for the hallucinations. Any recommendations you might offer would be appreciated.

Catherine W.

Medical Reply

There are a few suggestions that you can discuss with your doctor.

The Celexa (which is similar to most all antidepressants except for Wellbutrin) typically worsens RLS so if it is possible to eliminate that medication (without worsening your depression) then you might have fewer problems with your RLS.

Neurontin/gabapentin does not get well absorbed into the body which is why that high dose is likely not helping (it should help within a few days). Most patients do not experience much more benefit from the drug once they have exceeded doses of 600 mg per dose. A change to Horizant (which turns into gabapentin but gets much better and much more consistently absorbed) could be quite helpful.

We do not recommend Percocet as it contains acetaminophen (Tylenol) which does not help RLS but could cause side effects over time. Most experts use oxycodone or methadone instead.


Sent: Thursday, March 05, 2015 11:39 AM
Subject: RLS - safe post-menopausal HRT

Are your familiar with any RLS friendly post-menopausal hormone replacement therapies I might try? Iíve tried many years ago (early 40ís peri-menopausal) and they seemed to exacerbate the RLS or had other concerning side effects.

Pam M.

Medical Reply

Changes in hormonal therapy (increasing, decreasing or changing to different medications) can have unpredictable results. What works for one person may not work for another. Therefore, it requires a lot of trial and error to find the right dose or medication that does not worsen your RLS.

A Reply from Pam

Sent: Sunday, March 08, 2015 11:21 AM
Subject: Tramadol

I have read conflicting opinions on tramadol augmentation. Can you augment on it? If so, I don't understand since it's not a dopamine agonist. And what category does Bupropion fall in with regards to RLS?

Lastly, can you augment on Lyrica? I've read you don't augment on Alpha-2 delta drugs but I believe I've read some nasty Lyrica withdrawal side effects posted by a few on the rls.org forum.

Pam M.

Medical Reply

Tramadol is the only non-dopamine drug that can cause augmentation. I have seen several cases as have other RLS specialists and it has been reported (twice) in the medical literature. We do not understand why dopamine drugs cause augmentation and we thus have even less comprehension as to why tramadol may cause this problem.

Bupropion (Wellbutrin) is typically neutral with respect to RLS and sometimes may actually help RLS symptoms (possibly due to some dopaminergic action in this drug).

Lyrica and the other alpha-2-delta drugs (Horizant, gabapentin) do not cause augmentation. Withdrawal effects may happen (so tapering off slowly may be helpful) but I have not seen that happen very often.


Sent: Sunday, March 08, 2015 3:49 AM
Subject: Problems with ropinirole and use of oxycodone for RLS?

At the moment I am taking immediate ropinirole 1 mg at 8 pm then at 10.p.m. I take another 1 mg but the problem is I am not sleeping. It is as if my brain will not turn of I have tried reducing the medications but then my legs would start. Therefore, my GP has prescribed the slow release oxycodone 5 mg as a sleeping aid. This seems to do the trick but the next day I feel so drugged up. I am walking round like a zombie. Could you please offer any advice.

Susan T.

Medical Reply

Oxycodone is not a sleeping pill (and should not be prescribed as such) but may have sedative (unwanted) side effects. Oxycodone does not come in a 5 mg slow release formulation (in the USA) so you might be getting the immediate release medication. Oxycodone does help RLS symptoms which might let you reduce the ropinirole (Requip) which in turn might help you sleep better. Shorter acting opioids might work better to not cause morning sedation.

However, since the Requip is causing issues, you might want to discuss changing your medication to other RLS treatments that donít cause side effects.

A Reply from Susan

Sent: Monday, April 13, 2015 3:19 AM
Subject: Cold turkey on ropinirole?

I have just gone cold turkey stopped all my dopamine drugs (was taking slow release ropinirole) 4mgs but I got augmentation really really bad, so decided to come of all the drugs (ropinirole) I now take tramadol +an anti-histamine because of the itching & up till now seems to be working fine. ONLY BEEN COLD TURKEY for a couple of days but the question I want to ask you is how long does it take for the dopamine to get out of your system & how long do I take the tramadol for.

Susan T.

Medical Reply

It can take 2-4 weeks or longer. Many experts feel that slowly tapering off the drug may work better. Tramadol may not be sufficiently potent to quell the withdrawal RLS symptoms.

You should only use antihistamines like Claritin or Allegra as the other (sedating) ones typically worsen RLS.

A Reply from Susan

Sent: Thursday, April 16, 2015 2:47 AM
Subject: Re: cold turkey

As you will no I have gone cold turkey & oh boy don't I no about it. Don't think I've slept for a week. At the moment I am taking tramadol to try & ease the pain but its not having any effect at all. I am up most nights pacing the floor but I am determined to come of the dopamine drugs. The reason for my email is after the dopamine drugs, what do you take for the RLS.

Can you also tell me about a drug called Trazodone. My GP prescribed it to me a couple of months ago to make me sleep. Would this be ok to take along side the tramadol. If I could travel to the states for some advice I defiantly would because trying to find someone in England that understands RLS would be a blessing,

Susan T.

Medical Reply

Trazodone does not worsen RLS so can be used to help sleep in RLS patients. It does have a long half-life so morning sedation may occur. Tolerance may develop to Trazodone so is may stop working after a while.

It typically takes a few weeks until the RLS improves once the dopamine drugs are stopped. Drugs such as gabapentin or Lyrica may be tried. Often, only opioids are successful but most doctors (especially in the UK) will not prescribe them for RLS. Tramadol is a very weak opioid but still may be helpful to relieve some of the increased RLS symptoms that occur when withdrawing from opioids.

A Reply from Susan

Sent: Tuesday, April 28, 2015 5:59 AM
Subject: Problems with getting off ropinirole

Could you please explain, for the last couple of nights my legs have been all over the place and I couldn't get any sleep. I have been cold turkey off Requip now for 3 weeks (it's been a killer) but the last two days they have drove me mad. Currently, I am taking 100 mg of tramadol + 50 mg of trazodone. This combination has been ok up till now.

Could I replace tramadol (making my mouth very very dry + itching all over) with oxycodone & what can I take for constipation because oxycodone makes me very constipated? .I would love you to give me an explanation for the worsening of my RLS after doing well.

Susan T.

Medical Reply

I donít have a definitive answer for you as most patients who have improved at 3 weeks after stopping dopamine agonists tend to stay improved. However, the 2-8 weeks after stopping the dopamine drugs can be variable so although you should have mostly better days now, anything is possible.

We treat the constipation from opioids with stool softeners (Colace/docusate sodium), increased fiber (high fiber breakfast cereals or Metamucil) or MiraLax/polyethylene glycol type OTC laxatives which are very safe even in the long run.


Sent: Sunday, March 08, 2015 9:35 AM
Subject: RLS & Lexapro

I have been on both Lexapro & Mirapex for a long time. I recently weaned myself off Lexapro & my RLS is uncontrollable now. I take 1 mg of Mirapex but it's not helping anymore! I need suggestions badly! It's been 2 weeks and no sleep!

Jennifer M.

Medical Reply

Although Lexapro typically worsens RLS, some patients may notice that antidepressants like Lexapro may help RLS by controlling anxiety and depression.

The other issue is that you are on a high dose of Mirapex which can cause issues like augmentation (a worsening of RLS from taking a dopamine agonist like Mirapex) so other treatments may be better. Increasing the dose of Mirapex can provide temporary relief but will typically worsen the augmentation process with time. You may want to discuss changing your RLS treatment with your doctor.


Sent: Wednesday, March 11, 2015 6:10 AM
Subject: RE: Very mild RLS with severe PLMD (about 18 seconds per twitch)

I am now in clinical depression with general anxiety disorder.

I tried Zoloft and then Lexapro but after only a few days of medication restless legs appeared before sleep onset. I only had restless legs very infrequently before, and I am wondering if I continue with SSRI medication restless legs will become permanent even after medication is tapered off after depression has been resolved.

David W.

Medical Reply

SSRI medications like Zoloft and Lexapro tend to worsen RLS symptoms as you have already found out. The worsening only persists as long as you take the antidepressant medication and goes away when you stop the medication (it is clearly not permanent).

Wellbutrin is one of the only RLS friendly antidepressant medications but it may worsen anxiety problems.

If the SSRI medications are necessary then we just continue them and treat the RLS symptoms with typical RLS medications.


Sent: Saturday, March 14, 2015 7:14 AM
Subject: Augmentation on Mirapex

Hello. Iíve been taking Mirapex successfully for over 10 years and seem to suddenly be experiencing augmentation. When this started about three months ago, increasing the dose to .625 mg worked, but now I need .75 mg (spread throughout the day) and I fear that soon Iíll need more. Iíve read that Lyrica is a good alternative and want to discuss it with my GP at our upcoming appointment on Tuesday. I have three questions.

First, can I transition to Lyrica by starting with a low dose and, simultaneously, reducing the dose of Mirapex or must I go ďcold turkeyĒ on the Mirapex? Second, is it true that Lyrica causes tremendous weight gain in everyone or does it depend on the individual? Third, I tried Gabapentin two months ago (without reducing the Mirapex) and the Gabapentin actually worsened my RLS; Because Lyrica is in the same class of drugs as Gabapentin, does this mean that Lyrica is not likely to work for me? (I donít see opiates as a good alternative because I donít tolerate them well. They make me so nauseous that I often throw them up.) I appreciate any help you can give me.

Toni B. from California

Medical Reply

It does sound as if you have developed augmentation and typically, increasing the Mirapex will continue to provide temporary (less and less with each dose increase) relief but will result in worsening augmentation issues.

When transitioning from Mirapex to Lyrica, the dose of Mirapex can be gradually tapered or can be stopped cold turkey depending upon the dose (at .75 mg, it may be safer to taper). However, with stopping the Mirapex or once a significant dose reduction has occurred, it is very likely that the RLS symptoms will become very severe (even preventing any sleep) for several weeks or longer. Lyrica is a very good RLS medication for new patients but is usually not up to treating the severe Mirapex withdrawal RLS symptoms that occur once augmentation is present (only opioids handle this transition really well).

If you are going to try the switch from Mirapex to Lyrica, be prepared for some significant suffering from RLS symptoms for at least 10 days and possibly for several weeks or longer.

Lyrica and gabapentin do work on the same receptors but are somewhat different drugs. It is possible that Lyrica might work better but it is equally possible that it might worsen your RLS symptoms even more as it gets better absorbed than gabapentin.

A small (but vocal) percentage of patients do gain weight with Lyrica (much of it is often water weight) but it is a very individual issue.


Sent: Saturday, March 14, 2015 9:03 PM
Subject: Born with the Bermuda Triangle

I am a 44 year old female and I suffer from RLS, major depressive disorder and migraines.  All three are poorly understood and it seems as though they are commonly associated with one another, which is why I call it the Bermuda Triangle. All three run in the family, so I was born with these problems. I remember pounding on my legs on long road trips. I also found part of a diary I had written at age 13. I had written, "today I exercised so my legs wouldn't be so antsy". I was also born with obstructive sleep apnea (OSA) due to a anatomically small airway that couldn't help but collapse in a relaxed state.

I have always been very fit and slender, so no one ever thought to consider OSA, even though I snored as a child and didn't sleep through the night until I was 3 years old. Finally, I was diagnosed and had a tonsillectomy and a UPPP (which is no longer recommended) at 30.  The pain post-op tended to be pretty severe, so I was prescribed an opioid. I started waking up feeling rested for the first time in my life! But, as I weaned off the pain killers, I was tired all over again.  I was aware that my legs bothered me, especially at night and I noticed that they were much worse if I did not exercise that day. I wondered if I could somehow be addicted to exercise. 

With some research I finally figured it out. Several doctors and medication trials later, a neurologist with specialties in pain and sleep medicine moved to town and I have been seeing him for over 10 years a now. I had terrible experiences with with a lot of different medications. The absolute worst was carbidopa/levodopa. I, like a very high percentage of people who use that medication for RLS, ended up with severe augmentation of symptoms. Nobody warned me! Even worse was getting off of it!

Last but, not least, my doctor suggested codeine. I was a little nervous about that, but what did I have to lose besides more sleep and eventually my sanity? It worked. I ended up on morphine due to tolerance issues with the codeine. I have been using it for 10+ years and am on the same dose as when I first started and it still works just as well. I tolerate it without any problems and no significant side-effects. It's sort of like taking an aspirin in that I don't feel drugged, "high" or euphoric, groggy, etc. occasionally when I forget to take it, and I only take it before bed, when I realize and then take it, it literally feels like someone is wrapping a warm blanket around my legs and they calm down beautifully. 

Anyway, many antidepressants can exacerbate RLS, making an already difficult problem even more difficult to treat. As you may know, the DEA is making it more and more difficult to get opioids. I am fortunate to have a doctor who truly understands RLS, but this will not be an arrangement that lasts forever. He has suggested several times that I consider IV iron therapy and I think it is about time I start thinking about an alternate therapy.

My concern is this that my most recent serum iron was 213 and has been as high as 233. I have been assured that this is not indicative of hemochromatosis as my ferritin is always fine. The % saturation is also high, usually in the 70s. TIBC is WNL. It's another mystery of sorts and needless to say, I'm more than a bit nervous about the prospect of getting a big load of iron via IV. It also seems like the research may be yet preliminary. What has your experience been with IV iron? I am a clinical dietitian in acute care (for 20 years now), so I'm not a lay person in healthcare and have a lot of medical resources at my disposal that I utilize to do my own research, but I'm really stumped on this. Too many unknowns. I would appreciate any words of wisdom you may have.

Wendy B.

Medical Reply

The use of IV iron therapy is still in the experimental phase. There have been no controlled studies demonstrating its effectiveness and certainly no long term studies that prove that it is safe for treating RLS. However, we experts do use IV iron therapy when necessary.

Typically, we decide on iron therapy based upon serum ferritin levels as they represent the iron stores much better than the serum iron levels. The primary goal is to raise the serum ferritin level above 50-75. However, I have seen patients with higher initial ferritin levels who have benefited from this therapy. The reason is likely that the serum ferritin level does not always reflect the level or iron in the brain (although it is still is the best test we have short of analyzing ferritin in the CSF which would require a spinal tap).

Not all patients benefit from IV iron therapy as only 60% seem to respond adequately enough. The response may last from 3 months to 3 years with the average being about 18 months. A repeat infusion typically will work again if the patient has responded in the past.


Sent: Thursday, March 19, 2015 12:01 PM
Subject: RLS & Anti-depressant

I have bad RLS and very bad, chronic insomnia. Before I got the RLS, I took trazodone for sleep, which was a Godsend. Had to stop the trazodone when I got RLS, as it made it much worse. Ever since, I am sleep deprived most of the time.

I have not found anyone in Colorado Springs who can help me with sleep ever since I got RLS, since everything that would help me sleep makes the RLS worse. So I am in this by myself, trying to figure out what I can take. So that leads me to the following question: Is Buspar an anti-depressant? Would it help insomnia? Would it make legs a lot worse?

Irene O.

Medical Reply

Buspar is an anti-anxiety medication. It does not help depression. It also should not worsen RLS.

It might help insomnia indirectly if it decreases anxiety (especially if anxiety is a significant component of your insomnia).


Sent: Monday, April 06, 2015 8:41 PM
Subject: Lyrica for RLS?

I am an 88 year old woman who has been on Mirapex or Requip for some years. Past week ropinirole has not helped my nightly RLS and today my doctor changed me to Lyrica-25mg before bedtime. This Lyrica has not been effective and I am unable to stay in bed. The normal prescription seems to be 75 to 125 MG twice a day. My question is whether to try an additional 25 MG to see if this will help.

Am I putting myself in danger by adding another pill? The alternative is to try a 3 MG ropinirole, is this dangerous? Or must this be a no sleep night?

Janet R.

Medical Reply

The failure of Requip to help your RLS may indicate that augmentation of RLS is occurring (a worsening of RLS from taking Requip). If that is the case, increasing the dose will provide temporary relief (weeks to months or longer) but may ultimately lead to further worsening of your RLS requiring additional doses of Requip.

I cannot tell you if it is safe for you to take a higher dose of Lyrica (since you are not my patient and this decision is based on many factors). Most patients need between 50 mg to 150 mg (or more) to get benefits from Lyrica but of course as you increase the dose, the risk of side effects (mostly sedation) also increases. Check with your doctor before increasing.


Sent: Wednesday, April 08, 2015 12:27 PM
Subject: Gabapentin Side Effects

I am a 36 year old male who suffers from RLS. I have been taking Gabapentin for a little more then a year for treatment (i.e. I started 3/24/14) after briefly having tried Mirapex and Neupro to no effect. I am very sensitive to medication so my doctor prescribed the Gabapentin in 100mg tablets so that I could slowly increase the dosage. I am currently taking 1100mg and have been at that dosage level for about 4 months. I ended up at 1100 mg because at lower dosages I was still waking up. I would step up by 100 mg after about a week of being at a dosage.

At 1100 mg, I went from waking up and getting out of bed 4 or 5 times a night to only waking up once per night and being able to go back to sleep relatively quickly. While I am not waking up nearly as much, my head is "foggy" and I still feel tired during the day (at a level almost as bad as when I wasn't taking the Gabapentin at all). This condition is bad enough that I have serious problems concentrating and focusing at work. My typical medication and sleep schedule is below:

9:30pm- Take 1100 mg of gabapentin
10:30pm- Get into Bed
11:30pm- Lights Out
3:30am- Usually wake up for a short time, occasionally need to get out of bed
5:30am- My wife wakes up for work (usually hits the snooze but a few times)
8:00am- I get out of bed

I have read that side effects of gabapentin include dizziness, drowsiness, weakness, tired feeling. I am wondering if while the medication is helping me sleep at night, the side effects are making me feel tired and "foggy" during the day? Or perhaps while I am not waking up, the quality of my sleep is still poor?

A few months into taking the gabapentin (i.e. while I was slowly ramping up the dosage) I developed tinnitus in my left ear only. I am also wondering if this could be a side effect of the medication? I saw an otolaryngologist (ENT specialist) but they were not able to help.

Joe H.

Medical Reply

You are correct that the most frequent side effect from gabapentin is sedation/fatigue/dizziness which are all due to its suppressive adverse effects on the brain. The issue is that you might have considerable less next day side effects if you took a smaller dose. If you are using the medication in its higher doses for its sleeping pill effect (this is when the sedation is considered a benefit and not side effect) then you might consider backing off the dose so that it just covers your RLS but not the improved sleep maintenance (which may be occurring at the expense of next day sedation.

If you still fell that you would like to get more sleep without feeling groggy the next day, then you could discuss with your doctor adding a short acting sleeping pill (like Ambien) to help accomplish that goal without causing next day sedation.

I have never seen tinnitus from gabapentin (and I use a lot of that drug) but then anything is possible.


Sent: Thursday, April 16, 2015 1:29 AM
Subject: Restless legs sufferer.

I am a 70 year that has been taking Effexor XL for several years for both depression and anxiety which I believe we now have a handle on but still make my monthly visit to my doctor. After first taking Effexor XL I found I was having sleep problems and took a couple of sleep tests which confirmed that yes I was suffering from Restless Legs so my doctor proscribed Sifrol but that reacted with the Effexor XL so I was advised to stop taking the Sifrol and have been taking Panadien with 15 mg of codeine, gives some relief.

Is there some thing I can take to gain relief from the restless legs but will work with the Effexor XL? I troll the web looking for answers.

Merv B.
Australia

Medical Reply

I cannot find any evidence in the medical literature (or the product information) of any interaction between Effexor and pramipexole (Sifrol) nor have I seen any problems in my patients who take both or those drugs.

Other choices for treatment include the alpha-2-delta drugs (Gabapentin, Lyrica) or opioids (similar to the Panadien but we recommend drugs without acetaminophen since the acetaminophen does not help RLS).


Sent: Sunday, April 19, 2015 1:23 AM
Subject: RLS and insomnia

 If I told you how little sleep I get each night due to restless legs, you may find it hard to believe. Most nights, I get no sleep at all. However, there is another reason I am asking for your input. On the few nights the RLS medicine of the month has calmed my legs, I still have insomnia. I have given up on Rx sleeping pills, as they do not work in the recommended dose. A double dose works, but this is not a good pattern. I have tried herbs and they do not work either. I gave up caffeine and have a nice peaceful environment to sleep. I have tried meditating, stretching and massage.

Nothing seems to work --'with one exception -- that is a nice warm bath. One cannot stay in the tub all day and night. Is it common to have this combination every day and night? This is my tenth bad year. I had them during pregnancy and a few other occasions, but could shake them off. Not now.

Is insomnia part of RLS? Do you have a recommendation to help my sleep?

Anna M.

Medical Reply

Insomnia does seem to part of RLS even when the RLS symptoms are being controlled. It is thought to be due to high glutamate levels. Alpha-2-delta drugs like Horizant, Lyrica or gabapentin lower glutamate levels and may help both RLS and insomnia.

Treating insomnia can be difficult when there are no other underlying problems (such as bothersome RLS). You are doing many of the right things to help your problems but seeing an RLS specialist may help your RLS and insomnia much better.

A Reply from Anna

Sent: Tuesday, May 19, 2015 10:02 AM
Subject: Sleeping pills for RLS

I am having serious insomnia problems, even when my restless legs are somewhat controlled. The sleeping pills I have tried are Ambien, Lunesta and Temazepam. In your experience, is there one treatment more effective than the other? Perhaps, there is another medication I should try.

It is my understanding that many people with RLS have unusual reactions to some pills -- such as Benadryl. I have certainly found this to be the case. Any information you can give me would be appreciated.

Anna M.

Medical Reply

Insomnia is quite common in RLS patients even after the RLS symptoms are controlled. Ambien and Lunesta are selective benzodiazepine drugs (Valium/Xanax family of drugs) while temazepam is a full benzodiazepine (more similar in full action to Xanax). Most sleeping pills are in this general class but patients may respond differently to one or another. It depends upon how long they last (which varies considerably) and how fast they onset. However, these are questions that should be answered by the doctor treating you who knows how you responded to previous drugs (and all your other problems and issues).

Benadryl and most of the other OTC sleeping pills are typically antihistamines that make RLS worse and should be avoided.

Neurontin (generic gabapentin) helps RLS symptoms and also promotes sleep but its absorption is quite variable and you might not be getting all of your drug's dose into your body (especially at higher doses). Horizant and Lyrica are much more predictable and might help your sleep and RLS symptoms.


Sent: Tuesday, April 21, 2015 9:20 AM
Subject: Ketogenic diet

I've read that a ketogenic diet (like the Atkins diet) helps with restless legs. Does it? Is it a healthy alternative?

Harriet S.

Medical Reply

I am not sure where you read that (other than possibly an advertisement or someone's blog) but there is no evidence that any diet helps RLS. The Atkins diet has several issues and should only be done under your doctor's supervision.


Sent: Thursday, April 23, 2015 11:41 AM
Subject: Re: RLS...what to do next?

I'm currently on 1 mg of Requip, taken an hour or two before bedtime, and 100 mg of Gabapentin taken an hour or so before bedtime. Recall that my Neurologist added this last September. In addition, through iron supplements we have increased my ferritin level from 40 to 100. My symptoms have been much improved.

The doctor prescribed 3 capsules of 100 mg per day. I elected to take less and have taken just one pill per day, just before bedtime. While I continue to sleep much better with it, it seems that my symptoms are sometimes starting earlier in the day.

Should I go ahead and take 2 or even 3 tablets as prescribed? I'm simply concerned with getting "hooked" on another drug as I now am with the Requip.

Fred R.

Medical Reply

The earlier onset of RLS symptoms should have nothing to do with taking gabapentin. It is much more likely that the Requip is causing augmentation which is typically manifested by an earlier onset of RLS symptoms (along with other symptoms). Gabapentin does not cause this augmentation issue or in any way causes dependence/tolerance or addiction.

Increasing the gabapentin dose (assuming that your doctor meant for you to take them all at the same time) will not necessarily result getting more into your body after you get up to about 300 mg or more. As I have pointed out in previous email responses, gabapentin is very poorly absorbed, especially in doses above 300 mg. (which is why Horizant was developed as a better delivery system for gabapentin). Therefore, increasing your dose may only result in a very small percentage increase in delivery of this drug to your body.


Sent: Friday, April 24, 2015 1:56 AM
Subject: Treating augmentation?

I have severe augmentation from ropinirole. Can I quit ropinirole with out help? Would I be safe? Any idea how long my legs would move? Have to go without sleep? I realize there probably are not any exact answers, but any information on what to expect or to make it easier would be welcome.

Honestly, I may decide not to try. I like to see myself as "superman", but then both I (and my wife of 45 years) know better.

Richard S.

Medical Reply

Quitting ropinirole without substituting an opioid is typically extremely hard. Most specialists suggest that the ropinirole be slowly tapered but even so, as you decrease the dose (and especially after you take the last dose), your RLS symptoms will become markedly worse. Most patients cannot even get any sleep for at least 2 weeks (after the last dose) and possibly up to 2 months. It is a very harrowing experience to go through without the help of an expert RLS doctor.


Sent: Tuesday, April 28, 2015 10:58 PM
Subject: RE: Is this RLS

5 years later I still have this intermittent RLS. I am in the middle of an 'attack' right now after many months of being symptom free. Can it stay intermittent or will I be plagued every night eventually?

Also my 10 year old daughter complains primarily of restless arms. What can I do to help her please?

Louis B.

Medical Reply

RLS can be somewhat unpredictable so it is hard to say what will happen in your case. It may continue to stay intermittent or become more constant. RLS often worsens slowly over many years or decades.

Since RLS is quite genetic, it is not unusual for patients to have children with RLS. Patients with symptoms in their arms typically have a more severe type of RLS and may need treatment. However, none of the FDA approved drugs are approved for treating children, so you should take her to an RLS expert.


Sent: Wednesday, April 29, 2015 4:30 PM
Subject: RLS and withdrawal from Mirapex

I will turn 63 in July, and I have had RLS for close to 25 years. I am currently on temporary disability as a result of complications, and desperate for some sound answers. As a former journalist, I should have done this long ago.

The first few years my wife and I called it "the leg disease" because I had no clue what was wrong. A Newsweek story changed that. I tried Levodopa/Carbidopa, but didn't like how it made me feel. Sometime in the late 1990s or early 2000s -- I can't even remember exactly when now -- I was prescribed .25 mg of Mirapex (I know it was still off-label at the time) and the results were miraculous. No symptoms. I believe my father may have had RLS, but he never talked about it much.

I have also been taking Effexor for many years, perhaps longer than I have been taking Mirapex.

Over the years, I would go back to my doctor to tell him the Mirapex no longer seemed to work, and he gradually increased the dose. Over time, I began experiencing daytime RLS symptoms, sometimes so severe I could not possibly sit at a computer or drive. I have spent entire plane rides standing. At night, the symptoms sometimes were so bad even walking would not relieve them. Leaping out and bed and jumping up and down seemed the only way to make the sensations stop.

A few months ago, I hit 5 mg a night. I had been experiencing daytime tiredness, but then the real weirdness began. I started falling asleep spontaneously during the day, at my desk, at meetings, once while driving. If I just let me mind wander, I would often fall asleep! After several weeks of this, I went on disability, about seven weeks ago.

A neurologist suggested I stop taking Mirapex, but with no warnings about possible withdrawal. I started taking Horizant. For a few days I got a fever, as well as severe diarrhea and serious depression. The fever subsided, but not the other two. I stopped after 16 days because I could no longer take it.

I have been off Mirapex for about five weeks, but have been experiencing disturbing anxiety and panic attacks that I think could be withdrawal symptoms from that drug -- which no one ever mentioned to me. Xanax has provided some relief, and today seems better than yesterday.

Also, I seldom experience the daytime RLS symptoms anymore, and my symptoms when trying to sleep are lessened. I still can't get to sleep, but getting up and walking generally relieves them. No more running in place or pounding on my legs. I have been taking Restoril to sleep -- skipping it when I can because I am off work and can just stay awake until dawn -- but I know that is not a long-term solution.

I am planning on trying to get off my 150 mg daily Effexor, because it is known to make RLS symptoms worse, in the hope that perhaps my RLS symptoms could go away and I would be drug free.

But I really don't know what to do, and the doctors I have consulted aren't very informed, it seems.

-- If I have been off Mirapex for a month or more, am I likely past getting past serious withdrawal problems?

-- Will stopping Effexor possibly help my RLS?

-- Is low-dose methadone an option for me?

Jim O.

Medical Reply

There are 2 issues with stopping Mirapex. The first is the immediate worsening of RLS (which can be 24/7 and extremely severe) which typically gets better after 2-8 weeks. It does sound like you are over that phase since the daytime RLS symptoms have resolved and overall, your RLS symptoms are less severe. The second issue is that some patients get DAWS (Dopamine Agonist Withdrawal Syndrome) when suddenly stopping Mirapex. The symptoms of DAWS are somewhat vague and nonspecific (they can occur with many other medical problems) but they include depression, anxiety and impairment in occupational and social functioning.

It is not fully clear how long the DAWS symptoms last but one study found that patients (Parkinsonís disease patients who stopped the dopamine agonist due to impulse control disorders) resolved their symptoms in less than 6 months in 61%, in more than a year in 23%. However, Parkinsonís disease patients are very different from RLS patients and they are usually on much higher doses of dopamine agonists so this may not fully apply to you.

There is a very good chance that stopping Effexor will decrease RLS symptoms.

Low dose methadone is an option for many RLS patients (as long as there are no medical contraindications) but there may be other ďlower levelĒ treatments.

There is a very reasonable chance that you should be able to return to work with proper treatment. However, as you have already found out, most doctors including local specialists (like the neurologist that you saw) are not very expert on treating RLS.


Sent: Tuesday, May 05, 2015 1:25 PM
Subject: Itching and RLS

I belong to a few group sites, many people say they have itching with RLS. Here's my question, is itching a true symptom of RLS or a side effect from a drug they are using, or probably both. I've heard tramadol can cause itching and I know an allergic reaction can produce itching.

Are there any other drugs that can bring on itching as a side effect. But my main question is without drugs involved would itching be associated with RLS.

Peggy L.

Medical Reply

Itching is not a complaint that I hear often as just caused by RLS rather than due to medications since any medication can cause itching in a susceptible individual. Since RLS symptoms are often hard to describe, I have heard patients say that it was "like an itching in their legs (or other affected body parts) but otherwise, I would have to say that itching is not really an issue.


Sent: Tuesday, May 05, 2015 3:54 PM
Subject: Question about RLS

I have experienced RLS once before, when vitamin deficient. After treatment it went away. In August 2014 I withdrew from an SSRI I had been taking for 18 years. I experienced an acute withdrawal period with intense RLS, and still have periodic withdrawal waves now, with various physical (especially neurological) and psychological symptoms including insomnia, 'brain zaps', dizziness (vertigo), a 'crawling skin' sensation (like insects) and what I would call 'restless joints' only when in bed - my hips and knees particularly, with some discomfort in my elbows and wrists. I have to move them every few minutes and find it hard to fall and stay asleep. It does not quite match the sensation of the RLS I experienced before, as it is somewhat more 'achy' - but it is similar. Does this fit with 'restless leg syndrome'?

I am concerned that I may be compounding (or even causing) matters as I sometimes take Vistaril/Atarax for anxiety and nausea - and increasingly lately to try to help me sleep. I understand this can exacerbate RLS? However I have been taking Atarax for 4-5 years now with no problems, whereas this 'restless joints' sensation only started with the fairly recent SSRI withdrawal, and moreover it happens even when I haven't taken Atarax that day. (I'm hoping Atarax isn't the cause, as it works very well for my anxiety/nausea.) On balance do you think the Atarax might be a culprit?

My GP has offered me Lyrica for the RLS and anxiety, but I have problems with the side effects and potential withdrawal (especially after the SSRI experience) so am very cautious. He made no comment about Atarax.

Zoe M.
UK

Medical Reply

If you have to move your affected limbs due to the discomfort then it is most likely RLS (especially if the movement provides relief and the symptoms return when back at rest). Despite most patients finding significant relief of their RLS symptoms when stopping an SSRI, some patients do get relief with SSRI medications (especially if they relieve anxiety and/or depression) so may experience a worsening of RLS when stopping them. Also, there is a serotonin withdrawal syndrome that may occur with abrupt withdrawal of SSRI medications that might trigger increased RLS.

Atarax and Vistaril are amongst the more potent drugs to cause a worsening of RLS but as with the SSRI situation, there is some variation and some patients may not worsen with those drugs. Since you have been on those drugs for quite a while prior to the RLS symptoms worsening when stopping the SSRI, it is very difficult to say how much of an issue they are currently. Zofran is an RLS friendly anti-nausea drug that you can substitute and the short acting benzodiazepines (like alprazolam) may help to control your anxiety/insomnia if you want to see if you do better without Atarax and Vistaril. Lyrica is also a reasonable choice for both RLS and anxiety.


Sent: Thursday, May 07, 2015 3:02 PM
Subject: LDR (low dose naltrexone) and RLS?

Do you have any experience using low dose naltrexone (LDR) for restless legs treatment? I know it is used for auto-immune diseases, including fibromyalgia and neuropathy and have seen a few cases it has helped restless legs. I don't understand if it has similar RLS benefits as opiates do.

Pam M.

Medical Reply

Naltrexone is an opioid antagonist (meaning that it blocks the opioid receptors rather than making them work). Since opioids help RLS, it is hard to imagine that a drug that does the opposite would have any benefit for RLS.

There are limited studies demonstrating benefit for low dose naltrexone for several diseases but none for RLS (and I would think that any studies would show a lack of benefit or even worsening).


Sent: Monday, May 11, 2015 2:53 PM
Subject: RLS drug interactions

I am a 52 year old male here with moderate to sever RLS. I tried and failed both Mirapex and Requip trying to treat my RLS (sleep like a baby for 2-3 hours, then wake up in a panic for 2-3 hours ...). I am currently using Gabapentin (I also have idiopathic neuropathy and it treats that as well, Lyrica works better, but insurance ...).

Since I also suffer from anxiety (go figure!) I have been prescribed a 10mg dosage of Lexapro. My wife, bless her heart, reports my RLS has gone through the roof. A little research on the web does indicate that Lexapro can cause this. Is there anything I can do to moderate this effect?

Restless or anxious ... what a choice ...

Chris O.

Medical Reply

You have a tough problem in that all the SSRI and SNRI antidepressants tend to worsen RLS. Therefore, treating your anxiety problem will most likely worsen your RLS symptoms.

When antidepressant medications are necessary, we normally just treat around those medications. You may require more gabapentin (although this drug does not get well absorbed at higher doses) or the other alpha-2-delta drugs, Horizant or Lyrica (although both these drugs may be expensive since they are brand name only).


Sent: Tuesday, May 12, 2015 4:19 PM
Subject: RLS/Mirapex/Requip

I am trying to take a "Mirapex" vacation as the dosage to control my RLS is getting out of control with side effects. I have some Requip but don't know how much to take as an equivalent to 2 - 2.5 mg of Mirapex.

I have Neupro patches which are absolutely useless for me. I have to supplement them with the Mirapex. My doc told me to use 2 mg patches which I don't think are strong enough. They sure are expensive as I have to pay for them.

Jane M.
Canada

Medical Reply

The issue you have with Mirapex is that your dose is already extremely high. The highest daily approved dose is .5 mg per day (and I recommend going no higher than .25 mg per day). Most patients who get to those high doses are experiencing augmentation (a worsening of RLS from taking a dopamine drug like Mirapex or Requip) and the typical treatment is to get off the dopamine drug (which may take expert management and drugs that most Canadian doctors do not like to prescribe).

Requip works on the same receptors as Mirapex so is not really a ďdrug holidayĒ from dopamine agonists like Mirapex. However, Requip is less than ľ as potent as Mirapex so the replacement would be 8-10 mg (although as noted, that may not be a very good idea).

In your current situation, Neupro patches will not be too helpful (as you have already found out) as 1 mg of Neupro is equal to about .25 mg of Mirapex and the highest strength patch approved for RLS is only 3 mg (equal to .75 mg of Mirapex).

A Reply from Jane

Sent: Tuesday, May 12, 2015 7:35 PM
Subject: RE: RLS/Mirapex/Requip

I've had RLS since I was 15 and am now 63. My neurologist prescribed Mirapex over 10 years ago. I was past .25 mg in the first 3 months. It leveled off at a mg for a long time and it was increased. Seems to level off for a few years at each .5 level and then augments again.
I've had a really bad 4/5 months with hip surgery, back surgery followed by a heart attack. All if which increased my stress and RLS symptoms which increased the dosage. The side effects are getting to me but I don't know what the options are if there are any.
My neurologist is not helpful. She deals with it by prescribing Mirapex or Requip and recently Neupro. Although she seems open to other things if I come up with it.

Jane M.

Medical Reply

Your story is quite common these days especially it has been over a decade that Mirapex has been in common use. Most specialists (even neurologists and sleep specialists) are not familiar enough with RLS and augmentation and will often just keep increasing the dopamine agonist dose to temporarily (months to years) relieve RLS symptoms while actually causing the augmentation to worsen.

This is what most specialists currently do to treat augmentation.

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms (Horizant, Lyrica or gabapentin will only help marginally in this situation).

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.

An alternative treatment (which is still fairly new) is to change to a long-acting dopamine agonist. The Neupro patch is the only FDA approved long-acting dopamine agonist for treating RLS (up to 3 mg/day) and may work well for patients who are having augmentation on relatively lower doses of Requip (up to about 3 mg/ day) or Mirapex (up to about .5 mg/day). For higher doses of those drugs, a switch to long-acting Mirapex ER or Requip XL may be helpful (but these drugs are not approved for treating RLS so may not be covered by insurance plans). When transitioning from short-acting dopamine drugs to long-acting ones, the dose of the long-acting drug is started at the lowest dose and may be increased on a weekly basis as needed. The short-acting drug can be used to supplement the long-acting ones until the optimum dose of the long-acting dopamine drug is found.


Sent: Wednesday, May 13, 2015 2:08 PM
Subject: Mirapex and weight gain

I had back surgery and my infrequent bouts with RLS suddenly became horrible. My doctor started me on Mirapex which helps so much. The only drawback is I gained a significant amount of weight, which is linked with Mirapex in some, not all. I also have trouble with my memory. Is there anything else I can try that has the same great outcome with Mirapex but allows me to lose this weight. (I have lost 35 lbs but finding it really tough to lose the last 35 lb.)

Audrey
Eugene, OR

Medical Reply

There are other medications that you can try. However, the other approved medications are dopamine agonists like Mirapex so may cause weight gain or Horizant which may also cause weight gain. The other issue is that stopping the Mirapex will likely cause a marked worsening of RLS symptoms (unless you take another dopamine drug) that may last 2-6 weeks and Horizant (which works well otherwise) will not help that much to cover those 2-6 weeks.

You could discuss changing to an opioid (tramadol, methadone, oxycodone) but those drugs are not FDA approved for RLS (although they most often work very well even for covering the withdrawal issues from Mirapex) and most doctors are reluctant to prescribe opioids for RLS.


Sent: Wednesday, May 13, 2015 2:22 PM
Subject: Mirapex, Neurontin and dosage issues

I was on Mirapex for over one year. I have had two fainting episodes and last week, hurt myself very badly because I fainted in the bathroom. I am 66 years old and have low blood pressure. Now, (5 days ago,) my doctor has prescribed 300 mg. of Neurontin. I was taken off the Mirapex, cold turkey and am having a terrible time with RLS worse than ever. The Neurontin doesn't seem to be working well. I can't sleep and was up the entire night with out of control RLS. Any thoughts?

Pat D.

Medical Reply

Unfortunately, most doctors don't know that stopping Mirapex (or other dopamine drugs) causes a marked worsening of RLS that lasts from 2-8 weeks. Gabapentin may have worked initially but is not sufficient to help during the 2-8 weeks or this withdrawal worsening. Opioids do help but most physicians are reluctant to prescribe them for RLS.


Sent: Wednesday, May 20, 2015 10:16 AM
Subject: Restless Legs treatment and oxycodone?

I have had augmentation using Sinemet. I started by taking one half tablet, increasing it to seven or eight daily as my symptoms went from evening only to early afternoon if I tried to sit for more than a few minutes. I decided this was not good and that I needed to get off Sinemet. My neurologist agreed and prescribed gabapentin to which I had a reaction. He then wanted to prescribe ropinirole. I would not accept that. He would not agree to trying oxycodone.

I took information from the Restless Legs Foundation with me to see my primary care doctor. I asked about trying oxycodone. I had good experience with that following knee surgery. My doctor agreed it was worth a try. He also has sent a referral request to my insurance company to see one of the two sleep specialists in Seattle recommended by the Restless Legs Foundation.

It has taken me a little over two weeks to eliminate taking Sinemet. I have used 15 milligrams of oxycodone daily to do this. My question is what do I do now while I wait for referral approval?

Paul M.

Medical Reply

The first issue is that the sleep specialists may not have any more expertise than your neurologist for treating RLS in patients who have already experienced augmentation and they may not be comfortable prescribing opioids.

Most specialists (sleep specialists or neurologists) will be eager to start a short-acting dopamine agonist such as Mirapex or Requip. These may work well for a while (even years) but augmentation is quite likely with those drugs sooner or later. It is thought that the long-acting dopamine agonist, Neupro patch causes augmentation less readily so you might discuss this option with your doctors.

The other major class of RLS drugs is the alpha-2-delta drugs (Horizant, Lyrica and gabapentin) but since you had problems with gabapentin, they may carry over to the other 2 drugs.

That of course only leaves the opioids as an option. Some patients do stay on these drugs indefinitely (at the lowest dose that is effective) so you could discuss this option with your doctors.


Sent: Friday, May 22, 2015 4:40 PM
Subject: RLS

My husband has been diagnosed with restless leg syndrome. He has been on pramipexole for about 3 years. He started with 2.5 mg. Then went to .75 mg. He only took it at night. The drug stopped working and they did not want to increase it due to augmentation. The doctor slowly decreased the dose until he stopped. He was then supposed to start 300 mg of gabapentin, this is another drug with a lot of side effects.

My husband wants to try not taking any drugs. So far we had a bad night last night. Over time as the medication gets out of his system will his RLS symptoms improve? Do you have any suggestions or recommendations?

Lynda A.

Medical Reply

Short-acting dopamine agonists drugs like Mirapex tend to be very effective for treating RLS symptoms at first then often make RLS symptoms worse by causing augmentation. It often takes 2-8 weeks after being completely off the Mirapex before symptoms will calm down but usually only to levels where they were before the Mirapex was started. Since he needed medication 3 years ago, he will likely need medication again.

Gabapentin is a reasonable choice but it does always get well absorbed so other alpha-2-delta drugs like Horizant or Lyrica are preferred.

A Reply from Lynda

Sent: Friday, May 22, 2015 7:51 PM
Subject: RLS & acupuncture

Thank you so much for answering me. This is a horrible disease that affects the quality of ones life. I am hoping that my husband's symptoms will improve in a few weeks, if not I am sure he will have to take medication again. Our neighbor is an acupuncturist and we are considering that also. We will see how it goes. I dread going to bed at night.

Lynda A.

Medical Reply

Acupuncture has not been demonstrated as being effective for RLS. 

Under the care of a real RLS expert, your husband should have very little problem achieving complete relief of his RLS symptoms. The problem is that very few doctors really know how to treat RLS properly (which is why this website is set up and very active).


Sent: Monday, May 25, 2015 7:57 PM
Subject: Post augmentation from Mirapex

I'm a 43 year old male with PLMs and what used to be mild RLS. My RLS rarely prevented me from falling asleep and when it did act up I would get up and walk around to alleviate the symptoms. Other than that I had no trouble going to sleep and staying asleep. Gradually over the course of a year or so I became more tired throughout the day and my energy slowly decreased. As it continued to get worse I decided to see a doctor. All I knew to tell him was that I was always tired and had no energy. After a lengthy conversation with him he determined I had a sleeping disorder and sent me to a sleep specialist. After a sleep study the results were 72 leg jerks/movements per hour so I was prescribed .25mg Mirapex.

At first it worked great but eventually had to be increased to .5mg. Soon the Mirapex caused augmentation and 600mg of Neurontin was added. After 4 years of worsening augmentation I switched from Neurontin to 600mg of Horizant for a few months then after doing my own research and reading this site I realized Mirapex was the problem and quit cold turkey. Unfortunately my sleep specialist didn't understand the negative effects of discontinuing DA's and only prescribed Tylenol 3 and eventually Norco 5mg after I told him about the horrible withdrawals.

I've now been off Mirapex for 3 months and the augmentation seems to have disappeared but now my RLS is giving me issues falling asleep or staying asleep (a problem I didn't have before Mirapex) I'm still taking Horizant but it doesn't seem to be helping much with RLS. Could this be left over from withdrawals or did the augmentation of Mirapex make my RLS permanently worse?

Could Lyrica be an alternative for Horizant? I'm out of answers at this point.

Chris D.
Mobile, AL

Medical Reply

One of the reasons why many RLS experts do not like to treat PLMS with short acting dopamine agonists like Mirapex is that it can often result in augmentation of the RLS symptoms (and sometimes even of the PLMS). Furthermore, we are not sure whether the PLMS actually do result in sleep disturbances (even with 72 jerks/hour).

After 3 months off the Mirapex, your augmentation should be resolved but you are correct that it is common for the RLS to stay active once the Mirapex has "woken up" the RLS. It is not understood why this occurs but I have seen several similar cases.

Horizant may help but you may need higher doses (like 2 or 3 tablets taken together) even though the highest recommended dose is only 1 per day. Lyrica is a reasonable alternative and can be increased to 300 mg or more if needed.

If those drugs do not help sufficiently, then low dose opioid therapy is reasonable. You should then use "pure" opioids like oxycodone or methadone that do not contain acetaminophen (Tylenol) like Norco as the acetaminophen does not help RLS and thus the risk of side effects is not balanced by any possible benefit.


Sent: Monday, June 01, 2015 1:20 AM
Subject: Switching from Pramipexole (Mirapex): best options?

I'm in the UK. I've been on pramipexole (Mirapex in US) for about eight years. I'm getting augmentation and want to come off it.

I've read good reports about gabapentin: would it be possible for me to switch directly from one drug to the other, or would they need to be an overlap? Would I need any transitional meds for the switch over?

I've been told by a long term sufferer that both the DAs (Mirapex) and the anti-seizure meds (gabapentin) ultimately lead to augmentation, and that the only long term solution is opioids: she has been prescribed 5mgs of methadone and it's working well for her.

This seems a terribly drastic solution, though, and dependency would surely be a concern?

Simon

Medical Reply

The issue is that although gabapentin is a reasonable RLS drug, it is not adequate to treat the marked worsening that occurs when stopping pramipexole (especially after augmentation has already occurred). Typically, opioids (methadone, oxycodone) are necessary for transitioning off dopamine agonists (and it will be hard to get a UK doctor to prescribe them). When the opioids are prescribed in low doses and monitored carefully (and of course not prescribed to patients with a history of drug abuse), dependence/addiction should occur rarely, if ever.

The only drugs that lead to augmentation are the dopamine drugs and tramadol.


Sent: Tuesday, June 02, 2015 5:48 AM
Subject: Pregabalin

My RLS/PLMD started whilst being on 400 mg Pregabalin for migraine treatment. I have 24/7 RLS/PLMD. Dopamine agonist donít seem to work for me. I have been on Pregabalin for many years now and just put up with the RLS/PLMD. I have started to have enough now so I was considering trying to come off the pregabalin to see if the RLS/PLMD disappeared. Do you think this is a good idea?

Adam H.

Medical Reply

Pregabalin is actually one of the best treatments for RLS/PLM so it is very peculiar that your RLS would start while on that treatment. Stopping the drug may not only worsen your migraine headache problem but it could potentially cause a worsening of your RLS (if the drug is actually helping the RLS and the symptoms are so severe that they are breaking through the pregabalin).


Sent: Wednesday, June 03, 2015 12:03 PM
Subject: Help with RLS

I am a 54 year old male who has had restless legs symptoms since high school. During my high school years it was intermittent and just annoying. My symptoms increased in college but running five miles a day seem to alleviate the worst the issues. Up until ten years ago the only medication that was tried was Sinemet, after a sleep study. This was so long ago and I have no idea what the dosage was but it had no effect. I did have surgery of the soft pallet for sleep apnea.

About ten years ago I was diagnosed with chronic pain, five different neurologist gave me five different diagnosis. I have put them in order of what I believe is accurate. Neuromyotonia, chronic myofascial pain, fibromyalgia, chronic regional pain and just chronic pain. Getting no relief from the neurological community I ended up at a pain center.

The pain center medications started out low but ended up at a high of morphine ER 30 mg, 3 times a day, Klonopin 2 mg at bed time, flexeril 10mg, four times a day and Percocet 10/325, 5 times a day. Of course while on all these medications I had no issues with sleep or restless legs. The pain has eased and I have reduced my medications to only Percocet 10/325, 4 times a day and Ambien ER 12.5 mg at bed time. The Percocet is the only medication that is some what effective in calming the restless legs but the effect is very short lived.

As I reduced the other medications my restless legs symptoms have returned with a vengeance. I have tried Mirapex, which I took once and it caused extreme agitation and was not taken again. I have tried Requip 3 mg which worked for a while but eventually stopped working and again caused the agitation. I have also tried Neupro 2 mg, which worked for a while but again stopped working and began to cause the agitation issue. I also tried Horizant with no effect. All the medications except the Horizant caused augmentation.

For sleep I have run the gambit of the non benzodiazepine, sleeping pills, Ambien, Ambien ER, Sonata and Lunesta. None of these medications help with sleep at all anymore.

I saw a movement disorder specialist but all she did was recommend that I take Sinemet and increase the dosage of the Neupro. I refused her treatment plan as this would only cause increase symptoms and set me up for dopamine agonist withdrawal symptoms.

Lars O.

Medical Reply

I am not sure that amantadine would be a good choice (especially given your variable/problematic response to dopamine related drugs).

It is possible that Horizant at higher (than approved by the FDA, up to 3 tablets taken together) doses may work even though the one tablet was not successful. There has also been very good with Lyrica (same class of drug) at high doses (300 mg).



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.


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

E-MAIL

To receive a response to your email letter, please use complete sentences with correct spelling (use your spellchecker), punctuation and grammar. Avoid abbreviations (do not use Dr or doc instead of doctor or yrs instead of years), incomplete words and do not use ALL CAPS or no capitals (like i instead of I or for the first word of a sentence). Email letters that do not follow these rules will not be read and will not receive a response.

 


   Click to go to the RLS HomepageRLS Treatment Page


Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 110.
http://www.rlshelp.org/rlscomp110.htm
This web site was last modified on Wednesday, June 17, 2015.
Cartoon above was created and drawn by Robert Van Den Berghe.
All material on this web site is Copyright © by the Southern California RLS Support Group, 2014.

 top.gif (438 bytes)  Top of Page