Patient letters on RLS symptoms and remedies- Page 94

Sent: Tuesday, November 23, 2010 8:09 PM
Subject: RLS in arms only?

As a long time sufferer of RLS I am acutely aware of the symptoms for the condition. However, my 50 year old wife recently began exhibiting similar symptoms but the the target area is in her arms. She has never had any problems with typical RLS in her legs. In the past few months, she has complained of arm pain and the uncontrollable need to move her arms (almost daily), which provides momentary relief and the symptoms typically begin in the evening as she is resting.

She does not get relief from non-prescription pain relievers, but she has used my RLS medication with success. Can someone who has never had RLS can suddenly begin exhibiting the classic symptoms in their arms or is it probable that there is another cause?

Jim D.

Medical Reply

The rule is that RLS must occur first in the legs before occurring elsewhere in the body. The arms are the most common body part that is affected when the RLS spreads from the legs. Like any rule, there are always some exceptions so it is certainly possible that your wife has developed RLS just in her arms. If she really has an urge to move her arms when at rest and this is relieved by movement (including walking without moving her arms) and her symptoms are relieved by a dopamine agonist (you do not say which RLS medication of yours she is taking but I will assume that it is either Mirapex or Requip), then it is quite likely that she does have RLS.

However, you may want to quiz her again to see whether she had some even minor symptoms of RLS in her legs prior to this current problem with RLS in her arms as it would still be a rarity for RLS to suddenly start just in her arms.

A Reply from Jim

Sent: Tuesday, January 04, 2011 6:20 AM
Subject: Similar Experience

If I may, I would like to share with Robbie J that the letter could have been written by me and your response spelled out exactly my course of action. After receiving relief for several years using Mirapex/Requip I had to get off the medication due to severe augmentation and side effects. I went through that hellish period of withdrawal after getting off Mirapex. For nearly two years my RLS has been controlled, for the most part, by 10-15 mg of Oxycodone and 600 mg of gabapentin.

Biggest problem is that there are some nights where I am wide awake (I assume due to one or both medications) but this regimen has worked remarkably well at keeping RLS symptoms at bay. I hope Robbie J has an understanding doctor like I do, especially when it comes to using low dose opioids, in treating RLS symptoms.

Jim D

Medical Reply

Gabapentin typically causes sedation (many RLS patients appreciate this side effect) so would be unlikely to be the source of your insomnia. Oxycodone results in sedation as a side effect more often than insomnia (although that is possible but much less likely). Therefore, the cause of your insomnia remains mysterious (as it often does).

You are correct in that many (most?) doctors will not prescribe opioids for RLS.

Sent: Wednesday, November 24, 2010 11:06 AM
Subject: RLS HELP NEEDED

I have written to you before asking for advice on what I can take for my RLS. Have you ever come across someone who cannot seem to take anything to get relief for their RLS.
I have tried all there is allowed to take medication wise. Either it didn't work or most of them just make me drowsy all day.

I have tried ropinirole, pramipexole, gabapentin, codeine, tramadol, morphine, and the Neupro patch. My doctor has said I have tried all he can give me. I seem to be very sensitive to the sedation part in the medications. I have been un-medicated for a year now, coping the best way I can. But the RLS is slowly getting worse and I am becoming housebound as I am just so
sleep deprived.

I so need to be able to sleep through the night and find a medication I can take that doesn't make me sleepy all day.

Irene in the UK.

Medical Reply

I would suggest that you discuss trying other anticonvulsant medications with your doctor. This includes Lyrica, Topamax, Gabitril, etc. which may work better than gabapentin which is well known to cause sedation. The other anticonvulsants may also cause sedation but typically not a severe or prolonged as with gabapentin.

You should also consider adding another opioid like hydrocodone or oxycodone but at lower dose to decrease the side effects. Often a combination of medications at lower dose work better than one medication at higher doses.

Sent: Wednesday, November 24, 2010 8:17 PM
Subject: Restless leg syndrome and heart failure?

I would like to know if RLS patients who also suffer from heart failure and low heart rate can take medication for RLS. What class of medication would be appropriate for such patients.

DCJ

Medical Reply

The current medication that we use for RLS does not typically interact with heart failure or causes any decrease in heart rate. Therefore, all the current medications on our preferred list (dopamine agonists, anticonvulsant drugs, opioids and sleeping pills) should not be a problem.

Sent: Tuesday, August 03, 2010 8:39 PM
Subject: Naltrexone

I have severe RLS. I received a tip that I should try Naltrexone. My neurologist consented to give it a trial and it has really helped for several months.I also take Diazepam for help with sleep.

I would like to know if anyone else has tried it and if so, have you found it helpful?

Ron J.

Medical Reply

As naltrexone has not yet been studied for treating RLS, we really don’t know that much about this drug and RLS. However, this drug blocks the opioid receptors (which is why it is called and opioid antagonist) which should result in worsening RLS symptoms as opioids markedly improve RLS symptoms. There is one study (Sleep Med. 2001 Jan;2(1):57-61) that found naloxone (a full opioid antagonist) did not worsen RLS symptoms when given to patients while an earlier study (Adv Neurol..1986;43:309-19) found that naloxone blocks the beneficial effects of opioid drugs for RLS.

It would be helpful if you could tell us the dose that you are taking that works for you.

Diazepam (Valium) does help with sleep but has a very long half-life which is one of the reasons that it is not used that much any longer. Better choices for helping your insomnia include Ambien or Lunesta.

Sent: Monday, December 06, 2010 9:48 PM
Subject: I need help with my RLS (Kicking and Jerking leg movements during sleep)

I am 42 years old and have RLS. It only bothers me a little in regards to getting to sleep. I already take several medications: Xanax, Requip and Neurontin.

I can get to sleep fine. The problem is during sleep I kick and jerk my legs to the point that my fiancé will no longer sleep with me and it is severely interrupting our relationship. I know that sounds superficial but I understand as I want to sleep with her as well. The only type of medication I haven't tried is pain killers because my doctor will not prescribe them because of the possible habit forming side effects.

Does anyone know what the best bet is to help with the kicking and jerking effects of RLS?


Randal
Dallas, Texas

Medical Reply

The leg kicking problem often creates issues with bed partners. The best medication to suppress the PLM (leg kicks) is Requip. You could possibly consider increasing the dose to further suppress your PLM but there are concerns with higher doses of dopamine agonists (Requip, Mirapex). Anticonvulsants (like Neurontin and Lyrica) are the next best medications to decrease PLM. Again you could consider an increase in the Neurontin dose or changing to Lyrica but this approach may cause more harm than good. Pain killers are very effective for RLS symptoms but not very good for PLM (and if taken correctly rarely if ever should cause concerns with being habit forming).

For problems that do not bother the patient but rather the innocent bystander bed partners, non-medication solutions are far preferred. We typically suggest changing to twin beds (put them together until you are ready to sleep then just separate them by a fraction of an inch at sleep time) or changing to a king-size memory foam mattress (like a Tempur-Pedic) which dampens the leg kicks.

A Reply from Randal

Sent: Monday, December 06, 2010 11:46 PM
Subject: Re: I need help with my RLS (Kicking and Jerking leg movements during sleep)

Thank you so much for your fast response. I have an appt with my doctor in the morning. Will try more Requip... In regards to an increase in the Neurontin what are you referring to as to why it may cause more harm than good. I should probably know this but not sure what you are referring to. It's a new drug to me. Thanks.

Also, I take Wellbutrin which affects dopamine as well. Will the Requip and Wellbutrin offset each other? I thought Wellbutrin had less worsening affects on RLS/PLM than other antidepressants like citolapram (Lexapro) but I may be just running in circles.

Randal
Dallas, Texas

Medical Reply

Neurontin tends to cause sedation, dizziness, next day drowsiness at higher doses. Everyone is different so you can only tell what will happen to you by trying it. Again, non-medication solutions for your problem are much more appropriate although many choose the drug therapy as a cheaper and more direct remedy.

Wellbutrin has a mild dopamine effect so typically does not do much to help RLS (its main benefit is that is does not worsen RLS). It does not affect Requip as its dopamine agonist action (which is what Requip does) is minor.

Sent: Wednesday, December 08, 2010 7:43 AM
Subject: Mirapex withdrawal-Help

I have been taking Mirapex for 10 years now and due to Augmentation I am having to go on a drug holiday. My doctor started by weaning me off from the Mirapex while adding increasing dosages of Lyrica. After getting to a dose of 225 mg of Lyrica (after one month), I had to go on high potency opioids (30 mg OxyContin) in order to stop my restless legs. I'm now on day 11 since stopping the Mirapex all together.

I continue to take high potency opioids and am having no sign of of change in my restless legs. Shouldn't I be experiencing some change by now? I am scared that this won't get any better and am concerned about getting dependent on the opioids.

Beverly

Medical Reply

Most patients with augmentation start to improve and need much less of the opioids about 7-10 days after stopping the dopamine agonist (in your case, Mirapex). However, some patients take a little longer to get better. If you do not improve in another week or so, you may either be a very unusual case or perhaps you did not have augmentation in the first place.

A Reply from Beverly

Sent: Tuesday, December 14, 2010 6:05 AM
Subject: Re: Mirapex withdrawal-Help

I have not taken any Mirapex for 16 days now due to Augmentation. During this time I had to take 30 mg of OxyContin and 150 mg of Lyrica to stop my legs from jerking. During the last few days I have been able to lower my dose to 20 mg of OxyContin. Last night I was able to make it through half the night on 10 mg of OxyContin.

Does this decrease of 10 to 15 mgs of OxyContin constitute a reset? I'm not sure what to expect from here on in.

Beverly

Medical Reply

You are clearly getting over the augmentation problem, but slowly. Your ability to decrease the OxyContin definitely reflects this improvement. You may be able to decrease the OxyContin somewhat more over the next few weeks, especially with an increase in Lyrica (if you and your doctor decide that is part of your plan for treatment).

A Reply from Beverly

Sent: Friday, December 17, 2010 4:29 AM
Subject: Re: Mirapex withdrawal-Help

The last few nights my restless legs have been getting worse and I haven't been able to get through the night without taking 30 mg of OxyContin. I don't understand why the symptoms have increased after having a few days where I was taking less. Does that mean my augmentation issue isn't getting better? I have not taken Mirapex for 18 days now.

Beverly

Medical Reply

It is very hard to say why your RLS symptoms have increased and you need more OxyContin over the past few days. At this point, it may or may not have anything to do with your augmentation problem. It is possible (and somewhat likely) that other factors are intervening to worsen your RLS but these may be hard to discern. Give it a few more days and it may become clearer.

Sent: Wednesday, December 08, 2010 10:45 PM
Subject: Seroquel and RLS?

I have RLS & PLMD (30 years) and I have been on a low 10 mg. dose of Seroquel.

Many problems plus SCA 1 and Multiple System Atrophy. I take Vicodin, Neurontin, Digoxin, 1 mg Ativan. I have been depressed (more so this last year). I heard Seroquel helps RLS but every night my legs jump so I play cards on the computer.

Do you know of any antidepressants that might work better?

Cecelia U
Mentor, OH

Medical Reply

Your information about Seroquel is incorrect. Seroquel, like most antidepressant drugs tends to worsens RLS. The antidepressants that are RLS friendly are Wellbutrin, trazodone and possibly some of the secondary amine tricyclic antidepressants (desipramine, protriptyline and nortriptyline).

Sent: Thursday, December 09, 2010 7:28 AM
Subject: Re: Requip and Insomnia?

Lyrica seems to be working for me. I'm taking 25 mg in the afternoon and 50 mg at bedtime. My RLS is well controlled. I still wake up briefly every couple of hours, but now I go back to sleep. My only side effect from Lyrica so far is a dry mouth at night.

Last night I slept around 7 hours total, which is more than any night in the last 5 or 6 years! Thanks again for your help, and to the group sponsoring this web site. It's a real lifesaver!

Sue C.

Sent: Thursday, December 09, 2010 7:29 PM
Subject: Klonopin and Ambien

I have RLS from Prozac which is disrupting my sleep, and cannot change anti-depressants. I have tried the two first line dopamine RLS drugs and they gave me bad anxiety (like Wellbutrin did). For sleep, I am treated now with 50 mg trazodone and 1.5 mg Klonopin which works OK. I want to get rid of the trazodone as I think it makes my sex drive worse with the Prozac and I think it also stimulates my appetite.

Can I add a hypnotic like Ambien 6.25 or 12.5 with Klonopin to try to be able to sleep well?

Gary

Medical Reply

Adding Ambien to Klonopin would be a very bad idea. Ambien acts upon the benzodiazepine receptors as does Klonopin but works more specifically (it only stimulated the benzodiazepine 1 receptor, not the 2 and 3 subtypes). Furthermore, Klonopin is one of my least favorite drugs for treating insomnia as it has a very long half-life (over 40 hours which creates next day sedation/dizziness) and is quite habit forming (Ambien or Lunesta alone would be a much better choice).

What is a much better choice would be to treat your RLS effectively so that you do not need a sleeping pill. Alterative choices to the dopamine agonists (Mirapex, Requip) include the painkillers and anticonvulsants. You should discuss these options with your doctor.

Sent: Friday, December 10, 2010 8:31 AM
Subject: What should I do for semi-restless nights?

Again I have come to you for advice. I am now taking gabapentin 300 mgsat 3 pm, and Requip 0.25 mg at 4 pm and at 10 pm before going to sleep I take gabapentin 300 mg and Requip 0.25 mg. I used to get very satisfying and relaxing sleep for 7 hours but not now.

I get nice sound sleep for about 4-5 hours and wake up. Then I have to try various positions and I am having very little sleep-not to my satisfaction.

As far as possible I do not wish to increase dose of my drugs.. What is your expert advise for me? Any lifestyle changes that I can implement or should I change the timing of the medication.

Dr. Tikendra D., MRCP (UK)

Medical Reply

Lifestyle changes may add some relief but to get further help, you will likely have to increase your medication.

Sent: Saturday, December 11, 2010 4:41 PM
Subject: Ropinirole

After self treating RLS for several years with Maq-Ox, then adding Flexeril for around three months, my new doctor started me on ropinirole last Monday. I saw my acupuncturist on Friday, who is a traditional Chinese doctor trained in western and Eastern medicine in China. He was alarmed that I was taking ropinirole. He insisted that my RLS was not that severe, it was merely a problem of circulation and I should live with it.

He stated that the drug would interfere with the brain messengers to ALL the nerves and muscles (I am not quoting him as he used more medical terms that I don't remember and this is my layman's interpretation) and my body would eventually require the medication like an addiction and I could never get off it AND seemed to indicate that there would be long term consequences. I have used my Chinese doctor since 1992 and he has successfully treated me for many ailments. I respect his opinion, but cannot find anything negative about this drug on the internet.

Rebecca M.

Medical Reply

Ropinirole (brand name is Requip) and pramipexole (brand name is Mirapex) are the only two drugs that are FDA approved for RLS. Although a minority of patients (10-30%, this number still has to be better defined with further studies) may actually experience worsening of their RLS from taking the drug (this is called augmentation and gets better once off the medication so there should be NO long term consequences), most patients do very well on these drugs especially when taken in low dose.

The concerns of your acupuncturist/Chinese medicine doctor are most likely not specifically about RLS medications (although by chance he is partially correct in this case) but probably applies to all drug related therapy. However, as detailed above, there are no long term consequences from taking Mirapex or Requip.

A Reply from Rebecca

Sent: Saturday, December 11, 2010 5:50 PM
Subject: Re: Ropinirole

I shall continue with the medication, as it does "appear" I can safely discontinue it. I am very sensitive to any medication and am only taking 0.25 mg, which seems more than strong enough to completely eliminate all my symptoms.  If I respond to a placebo, I can live with that. My husband is researching dopamine and is going to have a further discussion with our Chinese doctor as well as my endocrinologist, as I read there is a possible contraindication to Vivelle, an estrogen.

I shall continue to monitor ropinirole and similar drugs for my own peace of mind as I am not ruling out my Chinese doctor's concerns.

Rebecca M.

Medical Reply

Ropinirole at .25 mg is the lowest dose and if that works well then the risk of problems are very low. Any drug can cause problem in susceptible people so it is wise to monitor the drug's effect upon you.

Vivelle can increase the blood levels of ropinirole (this is not a contraindication but rather just a precaution to be aware of) but as you are on such a small dose, this should be a clinically insignificant interaction.

Sent: Tuesday, December 14, 2010 4:23 PM
Subject: Concerta for depression and RLS

I have written before asking advice for treating depression without making my RLS worse. On your advice I tried Wellbutrin but it did not work for me. I did some reading and found several good studies about treating depression with Concerta. I found a letter here where you said that ADHD medications would not make RLS worse and might help. My doctor was willing to try it and it really does help the depression. It works quickly (hours) for depression and stops working just as quickly if I stop taking it.

The reason I'm writing is to let other people know this is an option if they have tried other drugs for depression and could not tolerate the worsening of their RLS. As a matter of fact it actually helps the RLS quite a bit. The other evening I looked at the clock and it was 7:00 p.m. and I had had no RLS symptoms all day. That is the first time in a decade that I had not fought with RLS in the evening. I hadn't even thought about it.

I usually start having problems during the day, sometimes in the morning as well, and into the night. It was great not thinking about the RLS beast for awhile. Sometimes it feels like it has taken over my life.

I was diagnosed several years ago with chronic low-grade depression. Is it possible that RLS and the depression are linked, not just because of lack of sleep or the stress of RLS, but chemically? So many of the patients that write in here mention being depressed. Concerta is believed to have an effect on dopamine. Some studies I looked at mention dopamine as linked to depression. Is RLS really not just a movement disorder, but just one of a spectrum of related problems?

Paula R.

Medical Reply

There is a definite link between depression and RLS which has been documented very well in the medical literature. However, most of this literature has been written prior to the FDA approved RLS drugs being available and better recognition and treatment of the disease. It is quite likely that many of these patients were depressed due to the persistence of their RLS symptoms and lack of sleep. Although I have seen many patients drop all their depression medication and have no depressive problems at all once their RLS symptoms have been treated, many still need their antidepressant medication.

To see whether there really is a link with treated RLS patients and depression we would need to perform a study to evaluate RLS patients who have had their disease treated successfully and see if they still have a higher than normal percentage of depression (that would be a very interesting study!).

The link between dopamine and depression is very complex and not well understood. Dopamine agonists (Mirapex, Requip) that treat RLS are thought to have some minor positive effects on depression but clinically, I have not seen that much benefit on depression from these drugs when they do not improve RLS symptoms. Concerta does have some mild dopamine effects but big a role this effect plays in not known.

Sent: Saturday, December 18, 2010 3:11 PM
Subject: Possible RLS/PLMS sufferer from New Zealand.

I am pretty much at my wits end and do not know what to do from here, I found your email on a RLS forum I had been browsing in search of answers but I can't seem to pinpoint what exactly it is that I have.

I have been to a few specialists over here and some of them have suggested RLS with PLMS - this was quite a few years back and I was given Sinemet and Clonazepam for it. Since then I've been instructed to wean off Clonazepam as it was far too dangerous for someone as young as me (now 28) to be on it for such an extended time (over half a decade).

So I am currently on Sinemet, diazepam (weaning off slowly) and Loxamine (still not sure why I was put on this). When I fall asleep, I do have an urge to move my feet. Though it's rarely my legs and only my feet and it's not quite how one would usually describe RLS. I don't have any itching sensation or a sensation that needs to be lessened by walking around. I just know that I really, really like to move my feet before falling asleep.

This is more of a hindrance than an actual problem to me - it keeps me awake for periods but that is about all it amounts to. The real problem is the involuntary jerking or "shocks" I get when actually falling asleep. In certain positions, when I am falling asleep, I can get a shock on my body, a jolt. It could be anywhere but it's usually somewhere in my upper body. Sometimes I feel the need to gasp for air after it (I'm sure you're thinking sleep apnea right now) and sometimes it just jolts me violently enough to wake me up. This *only* happens when I am on the verge of drifting off to sleep and while it can occur in any sleeping position, the main culprit is when I'm on my side.

It can happen constantly, even if I am completely shattered and could voluntarily fall asleep within minutes, it will jolt me back awake. However this is only half the problem. The other half is that when I do get to sleep, I get to sleep fine and I sleep through the night. However I am *never* refreshed when I wake up in the morning. I need a good 9 hours to feel like I've even slept. Eight hours is not enough for me, anything less and the proverbial hits the fan. And so, of course anxiety sets in. I haven't had enough sleep and I have a lot to do during the day, anxiety sets in.

I mentioned sleep apnea above. I had a sleep study and it was mentioned that I have mild obstructive sleep apnea but while I do have it, it shouldn't make me feel as unrefreshed as I do during the day. I have a mandible (sic) splint that I wear at night made by a dentist with an interest in sleep - they call their practice Somnodontics and while it does help clear the airway and snoring, I'm still unrefreshed.

Which leads me back to RLS and PLMS - I can't seem to think of anything else that it would be. But as I said I don't seem to think that I fit the proper description of both RLS and PLMS. I  really am at my wits end and this email is coming to you after a severe jolt last night and anxiety attack the following morning due to yet another day unrefreshed and little sleep.

Matt H.
Auckland
New Zealand

Medical Reply

Based on your description, it is difficult to say whether you have RLS.

As far as PLM, that is easily diagnosed on a sleep study (you do not say if they found that on your sleep study). The jerks that you are describing sound more like hypnic jerks which occur when people fall asleep and are only mildly bothersome to most.

If you do have RLS, the Loxamine (paroxetine, called Prozac here in the USA) tends to make it worse. Diazepam is another benzodiazepine drug, similar to clonazepam (we typically try to get most patients off these drugs as they are addicting and tolerance develops easily).

If your lack of energy and feeling has anything to do with sleep, then the sleep study should have found the cause. It is possible that the benzodiazepines that you have been taking may be causing some of your daytime fatigue as they both have very long half-lives.

Sent: Monday, December 20, 2010 10:53 AM
Subject: RLS, radiculopathy and Neurontin?

I was diagnosed with RLS years ago which became worse after each pregnancy. I have been taking Neurontin 600mg at night for years as well but the RLS is beginning to break through. I now have to supplement with morphine or codeine when it gets bad or I have not slept for days. I was told by my neurologist that he felt my RLS was or may be due to radiculopathy as it is only down my left leg. I wanted to know if that was possible and which nerve could be involved? Also, if you had ever heard of that and why all of a sudden the Neurontin may not be working. As I said, I do use Hydrocodone which works beautifully but you know the negatives about that.

I also wanted to know if you knew the status of gabapentin enacarbil ? It sounds promising but last I read on the web, the FDA did not approve it in 2/2010 due to some concerns but were reviewing it again in 6/2010.

Sue

Medical Reply

It is usually hard to figure out why RLS suddenly gets worse after years of stability. Possibilities include taking an RLS worsening medication (OTC or prescription), increase in stress/anxiety levels, another medical condition that causes pain (I guess we could put that in the stress category) or a decrease in iron/ferritin levels (due to stomach or intestinal bleeding for example). It could also be due to natural progression of RLS which usually occurs slowly over years but may occur in a step like fashion in some patients.

Although RLS is more common with neuropathies (such as the radiculopathy or sciatica that you describe), the cause of the relationship in not known. In your case, it is possible that the pain from the sciatic problem might be indirectly decreasing your tolerance of RLS symptoms (there is no known effect otherwise that might explain your increase in symptoms from your sciatic problem).

For many patients, adding a pain killer (opioid or tramadol) may be a very reasonable solution with little downside when used in low doses.

There is some promising news about gabapentin enacarbil in that it has been resubmitted to the FDA with a decision expected about February 2011.

A Reply from Sue

Sent: Monday, December 20, 2010 10:46 PM
Subject: RE: RLS, radiculopathy and Neurontin?

I recently had a laminectomy for a pinched nerve in the L5/S1 area and was hoping it might take care of the RLS but was disappointed to see that it did not. I am very hopeful about gabapentin enacarbil as it sounds very promising!

Stress is a factor in my life (mom, manager of my department, aging parents) and my iron storage was very low at one point. It's now brought back up to normal levels. However, recently (prior to the spinal surgery) the RLS symptoms began to break through the gabapentin 600 mg I am currently taking. My iron turned out to be within acceptable levels at that time.

I have opioids on hand and they work absolutely beautifully with the nasty side effect of causing insomnia! ( Hence I am up writing this email at 1:44 am but RLS symptom free! If only I could sleep!) So I try not to take it as much as it does help. As for medications that cause RLS or cause it to exacerbate, I avoid those like the plague. They keep wanting to push antidepressants on patients like me and I keep reminding them that those meds cause symptoms to worsen. Especially Effexor.

Besides, if I could just get some sleep I wouldn't need the stupid antidepressants! How safe would it be to keep taking the Hydrocodone each night ?? On an offside...I find that Zofran helps a great deal too! It was prescribed to me for chronic nausea.

Sue

Medical Reply

Zofran is an RLS friendly anti-nausea drug but it otherwise does not generally help RLS.

There are not many RLS doctors who can handle more difficult RLS cases such as yours so it is difficult to recommend one in your area. The RLS website only have a list of doctors who say that they treat RLS but do not rate their level of expertise which may vary quite widely.

Again, most patients have little trouble when using opioids in a low dose once daily. Although hydrocodone may cause insomnia, other opioids may suit you better but only trial and error can determine that.

A Reply from Sue

Sent: Tuesday, December 21, 2010 7:39 AM
Subject: RE: RLS, radiculopathy and Neurontin?

As for Zofran, when I take it I noticed that it too helps quell the RLS symptoms! (Off label ?). Even though it's a powerful anti-emetic, it attacks the area of the brain which I wonder isn't also an area that affects RLS ! ( Isn't that how some off label drugs are discovered? LOL).

As for opioids, may I ask what other low does opioids are out there? I take Vicodin and lately, since I had surgery, have been using Norco 10/325 which seems to work better. Here in NY, they are super conservative with those type of drugs because in their mind everyone will become addicted. It really irks me because I do not have addictive tendencies.

In fact, my neurologist confirmed a suspicion I had that some people lack what drugs like Norco provide in RLS patients and FMS patients (which I have a mild case of). I can take those drugs for two weeks straight and still cut cold turkey with little to no side effects. Since the Norco is working so beautifully I will have a problem getting it even though it is justified. Again, irritating!

Sue

Medical Reply

Since Zofran (or any other drugs in its class) have never been studied in RLS patients, we really do not know if they could decrease RLS symptoms. However, I have used this drug a lot in many RLS patients (who are having problems with nausea and can’t take the typical anti-nausea drugs that worsen RLS) and I have not yet heard of the drug improving RLS symptoms. Therefore, it is likely that the improvement that you experienced is somewhat unique to you and thus may be even more difficult to explain.

I do not recommend Vicodin to be used for RLS on a daily basis as it contains acetaminophen (Tylenol) which does not help RLS (and we don’t like exposing people to drugs that can only cause side effects without providing any benefits). Unfortunately, the low and medium potency opioids are only manufactured in conjunction with acetaminophen or ibuprofen (unless you want to pay a compounding pharmacy to make the pure drug {like hydrocodone} up specially for you). The more potent opioids like oxycodone, methadone do come in pure formulations. To get around their high potency, they can be split so that lower doses can be taken.

Again, when these drugs are taken under a knowledgeable doctor’s supervision, tolerance, dependence and addiction should happen rarely (if ever) especially in a patient without a history of drug abuse.

Sent: Tuesday, December 21, 2010 11:47 AM
Subject: Long Term RLS Sufferer

I am a 55 year old male who has been suffering from RLS for nearly a decade. I had a sleep study performed about the time all this started and was told I had Periodic Limb Movement. I should mention at that point my symptoms were hardly even noticeable. I was prescribed Mirapex and slept like a baby for several weeks, then augmentations set in and severity increased exponentially and rapidly.

My physician switched me to Requip and in good faith advised it would have less augmentation problems. Unfortunately this was incorrect as the augmentation has gotten progressively worse, so much so that I now have symptoms anytime while resting, including during the morning hours . It is now impossible for me to "nap" during the day or any other time for that matter due to the RLS symptoms, which were initially a nigh time nuisance. To complicate matters, the RLS sensations now include my arms, which at times bother me while my legs are "quiet".

About 2 years I was prescribed gabapentin 300 mg, 2-4 times per day as an alternative. This gave absolutely no relief whatsoever and I had to take Requip to get any sleep the first night.

I should note that just a few weeks ago I had a very difficult wisdom tooth extracted and was given Percocet 10 mg for pain. This, coupled with the Requip allowed me to sleep well for a few days until the prescription was all taken.

My questions:
One: Is augmentation permanent? Or, if I stop the Requip will my constant symptoms subside?
Two: Do you recommend the Percocet with another medication as opposed to Requip?

My symptoms are so severe that it has dramatically affected my lifestyle and relationship with my spouse.

Robbie J.
Carolina Beach, NC

A Medical Reply

Augmentation, when severe can be a horrible disabling condition that is unfortunately not well understood by most physicians (even by many of the neurologists and sleep specialists who may treat difficult RLS cases in your community). We are working on correcting this lack of education about recognizing and treating RLS but progress is very slow currently.

Many doctors try treating RLS by switching from one dopamine agonist to another which may work for milder cases of augmentation (sometimes) but rarely for severe cases such as yours. In fact, the recommended treatment is to get off dopamine agonists completely (and stay off them or the augmentation will return quickly and last as long as you are on the dopamine agonist).

This can be a very difficult process as the RLS goes into hyperdrive for a week or two when the dopamine agonist is stopped. After that withdrawal period, the RLS will typically subside dramatically, usually to levels that existed prior to treatment with the dopamine agonists (so this should answer your question about duration of worsened RLS once augmentation occurs). Potent opioids (like the oxycodone in Percocet or methadone) are usually needed to treat this 1-2 week worsening period when stopping the dopamine agonist.

Once the RLS improves, the dose of the opioid can be reduced or even stopped. We often try drugs like gabapentin or Lyrica at that point to see if that helps your RLS (although gabapentin did not work that well while your symptoms were severe due to augmentation, it may work better with lessened symptoms. Some patients may need a combination of a low dose of an opioid and gabapentin/Lyrica.

With proper treatment, life should get back to normal.

A Reply from Robbie

Sent: Tuesday, December 21, 2010 5:45 PM
Subject: Re: Long Term RLS Sufferer

I will surely take this information to my physician and discuss it in depth. My plan, based on your information is to suffer through this overdrive period, though I know it will be difficult. Thank you sincerely for your assistance, and please know you are making a difference. I will let you know how this effort unfolds.

Robbie J.

A Medical Reply

Good luck. It will however be extremely difficult to wait out the withdrawal period without using opioids.

Sent: Sunday, December 26, 2010 12:15 PM
Subject: RLS and Lipitor?

Had open heart surgery in October of this year. Then 6 weeks later had a very painful hemorrhoid surgery that took forever to get over. One of the meds they put me on was Lipitor ,a statin. I've heard statins are as one doctor put it "bad medicine". Could this have caused my miserable RLS? I also take 200 mg. of Zoloft every day and 1 mg Ativan as needed.

Please tell me a way to reverse this nerve damage ' cause I refuse to live this way the rest of my life. Pure hell!!!!!

Laura

A Medical Reply

Like most useful medications, Lipitor has its good and bad side. Most patient have no problem with the drug and benefit greatly from the reduced risk of suffering from a heart attack or stroke when taking the drug. Some patients do experience muscle pain from Lipitor but RLS does not occur or worsen from taking that drug.

However, Zoloft is known to worsen RLS and could be why your RLS is worsening (especially if the worsening started after you were put on the Zoloft). There may be other reasons for the exacerbation of your RLS symptoms but that is beyond the information in your email.

Sent: Sunday, December 26, 2010 5:33 PM
Subject: Will the sleepiness go away and how fast does it progress?

I have refractory RLS. I'm currently on 12 mg hydromorph contin daily, but that's been inadequate since early Sept. I get breakthrough RLS at various times during the day, a steady hum of it every evening, and frequent 1/2- to 1-hour interruptions at night. Zopiclone was added on Dec 14 (I take 3.25); I'd had that before, it helps and it doesn't make me sleepy the next day. On Dec 24, Lyrica was added at 75 mg nightly for the first week. (Both these were added on a sleep specialist's recommendations.)

But the first day after taking Lyrica I wanted to sleep all day, and today (second day) is the same thing, perhaps worse. Will this side effect go away if I brave out the week and keep taking it every night? It doesn't even completely eliminate my breakthrough RLS at night, at this dose, so technically if I follow instructions I'm supposed to raise it by 75 after a week. Will that make the sleepiness even worse? Will that also go away? My heart my brain everything I know tells me to stop this drug now, but I want to give it an honest chance.

My second question has to do with the progress of this disease in me. It's getting worse so fast that I wonder, is that a sign of a secondary cause? (even though it runs in the family and I've had it ever since I can remember). I started medication in Nov 2008, at which time I only had RLS symptoms in my legs, and only at night. I augmented on ropinirole and then was on various meds over the next year. My medication records (that I keep) show that in Dec 2009, I significantly increased my daily doses of both gabapentin and codeine. This, I think, was more likely caused by my RLS getting worse, not by tolerance developing to 2 drugs simultaneously.

And in Feb 2010, I got to find out that I have RLS in my arms and legs 24 hours per day, and that movement only dims the sensations somewhat but does not relieve them. This was not just withdrawal, because it went on for 4 weeks (at first I was taking only 5 mg oxycodone; later I was taking 5-10 mg oxycodone or 0.25 pramipexole or both - I chose not to take more than .25 P because I don't like to be useless from sleepiness all day.

The symptoms were less intense once I added pramipexole in). I started hydromorph contin last March. At that time, 9 mg was effective about half the time, 12 mg the other half. Over the next 6 months, the RLS got worse or I grew tolerant until 12 mg was required every night; by early Sep, 12 mg was not enough half the time and by October was almost never enough. I am wondering if this is a normal worsening or unusually fast? It seems extreme from what I've read. It's getting worse way faster than the medical system can keep up.

Beth

A Medical Reply

Lyrica can take a week or so to get used to. However, it is quite likely that even if you get some decrease in the next day sedation problems that You will not be able to tolerable the drug. Only time will tell but it is even less likely that you will be able to increase the drug (which will most likely be necessary to alleviate your symptoms) given your current response.

It would take much more information (like a consultation which is of course very difficult given your location) to figure out why your RLS is getting so bad. Many factors may be involved and your description is not sufficient (nor is this email service appropriate) for such a complex case.

A Reply from Beth

Sent: Mon, Dec 27, 2010 at 12:45 AM
Subject: Will the sleepiness go away and how fast does it progress?

Thank you. Thank you very much. Even though I still don't know what to do about the worsening RLS, that's nothing new and I just try not to look at the terror. I now know what to do about the Lyrica. I will sacrifice the next few days, taking it nightly, to show the prescribing doctor that I tried it for 7 days. Then, assuming the sleepiness hasn't gone away, I will quit it.

Beth

Sent: Tuesday, December 28, 2010 12:51 PM
Subject: RLS getting worse on Mirapex?

I am a pretty active man of 74 years and has had RLS for 30 years now. I have had a a lot of blood test and seems that the tests that pertain to RLS is in the normal range including iron ferritin. I am taking amlodipine/benazepril, thyroxine, omeprazole, simvastatin.  I have been taking 0.25 of Mirapex 3 times a day and filled in with tramadol 50 mg when needed for about 4 years now to treat RLS and that worked pretty well.

However, in the couple of months my RLS has went crazy and the doctor increased my dosage to 0.25 mg four times a day, which seemed to make it worst. This is making me think that I have augmentation and the Mirapex is wearing out. I read a lot and find that other people are having the same problem with Mirapex and Requip. I just want a peaceful evening and good night's sleep again. Is there any way you could help me out with a recombination for trying some different approach to treating RLS?

Dale S.

A Medical Reply

From your description, it seems reasonably likely that you have augmentation from taking Mirapex. You can read our many letters to see that the treatment is to get off Mirapex (or else the augmentation problem worsens) but this has to be done carefully.

Sent: Sunday, January 02, 2011 5:18 PM
Subject: Drug Interaction?

I am taking two .25 Mirapex: one in the am and one in the pm. I would like to begin taking amitriptyline for fibromyalgia and in an attempt to sleep better. Can you mix the two drugs safely?

A Medical Reply

There is no problem with any drug interactions between Mirapex and amitriptyline. However, amitriptyline may worsen RLS. Lyrica would be a better choice as it helps fibromyalgia and RLS.

A Reply from the above sender

Sent: Tuesday, January 04, 2011 10:47 AM
Subject: Re: Drug Interaction?

I also have a recurrence of breast cancer. Have I heard that Lyrica can potentially worsen the cancer?

A Medical Reply

There have been some statistical links between Lyrica and breast cancer. It is likely a very minuscule risk. Discuss this with your cancer specialist to be sure.

Sent: Monday, January 03, 2011 8:53 PM
Subject: Help with PLMD

My doctor was treating me for RLS because my legs were jerking throughout the night after going to sleep and continually waking me and my fiancé. However, we have now noticed that my upper body actually moves more than my legs. This is really causing my a terrible problem. I can't sleep in the same bed as my fiancé because she gets no sleep. Now, my movements are so frequent that I am getting very little good sleep. I wake continuously and my daytime sleepiness is becoming a huge problem with me falling asleep at any time or place.

My biggest problem is that I am out of work and have no medical insurance so I go to a volunteer doctor that is trying to help but without luck. I am on 900 mg of Neurontin daily and 3 mg of Requip at night. She won't prescribe a painkiller because she is worried about the addictive possibility. I am running out of things to try.

Randal S

A Medical Reply

You do not have RLS (which occurs only while you are awake and is an unpleasant leg sensation with an irresistible urge to move your legs) but rather it is more likely that you have PLMS. Neurontin does not help that much for PLMS but Requip should help. Therefore, it is very possible that you do not even have PLMS and are taking medication for no potential benefit.

Although you do not have medical insurance currently, you still need to get a sleep study in order to get a correct diagnosis before any medication should be prescribed.

Sent: Tuesday, January 04, 2011 6:39 AM
Subject: RLS and Abilify

I have been diagnosed with severe RLS. I also have bipolar disorder. Is the RLS a side effect of Abilify? I have very painful hips and legs. I am hesitant to take anything during the daytime that makes me sleepy. Any suggestions and advice that you may have about what drugs are the best for my condition would be greatly appreciated.

Kathleen B

A Medical Reply

It is hard to say whether Abilify can worsen RLS. It has some dopaminergic effects (which should help RLS) but is in a class of drugs that may worsen RLS. Experiences so far have been variable with this drug (some better, some unchanged and some worsened) but we need more information and experience before we can be sure what this drug does with RLS.

As far as what is best for your bipolar disease that will not worsen RLS, that is more difficult as virtually all the medications in this class worsen RLS.

A Reply from Kathleen

Sent: Wednesday, January 05, 2011 4:51 AM
Subject: RE: RLS and Abilify

What would you suggest for the severe pain at night? I am not sleeping because of it and over the counter medications don't work for me and I am allergic to sulfa.

A Medical Reply

RLS and associated pain responds extremely well to opioids. Discuss trying one of these drugs with your doctor. When used properly under your physician’s supervision they should be quite safe even for the long term.

Sent: Wednesday, January 05, 2011 7:31 PM
Subject: Mirapex Withdrawal Anxiety

I have been diagnosed with PLMD and have taken .75 mg of Mirapex/day for a few years now. I also have a generalized anxiety disorder and take 120 mg of Cymbalta/day. Twice over the last several months I have been without the Mirapex for about a week. Each time I have had SEVERE anxiety and uncontrollable crying – to the point of barely being able to function in my daily life.

Is this a common reaction? If I were to gradually taper off the Mirapex would I be likely to experience the same withdrawal? Any information will be appreciated.

Teresa

A Medical Reply

What you are most likely experiencing is called DAWS (Dopamine Agonist Withdrawal Syndrome). This occurs when stopping a dopamine agonist like Mirapex. It is not very common but has been described in Parkinson’s disease patients stopping dopamine agonists but has not yet been described in the literature in RLS or PLMS patients (however, I have heard from a few RLS patients who had typical symptoms of DAWS).

According to the first article on this issue published in January 11, 2010 (Dopamine agonist withdrawal syndrome in Parkinson disease. CA Rabinak, MJ Nirenberg Arch Neurol 2010;67:58-63) symptoms of DAWS included “anxiety, panic attacks, depression, dysphoria, agitation, insomnia, dizziness, nausea, irritability, fatigue, orthostatic hypotension, diaphoresis, generalized pain, and drug cravings.” Symptoms were unresponsive to levodopa, antidepressants, benzodiazepines, or cognitive behavioral therapy, but improved rapidly and dramatically with reinstitution of the dopamine agonist.

Tapering slowly off Mirapex may help somewhat but may not completely eliminate the appearance of DAWS.

A Reply from Teresa

Sent: Thursday, January 06, 2011 5:11 PM
Subject: RE: Mirapex Withdrawal Anxiety

Thank you very much for your response. I will see if I can find that article. Just one more question – Have you heard anything about how long the withdrawals are likely to last if the dopamine agonist is not reinstituted?

Again, thank you very much it helps to at least know that I’m not truly going crazy!

Teresa

A Medical Reply

Unfortunately, this has not been studied that well. However, the article states that they had to restart the dopamine agonist in almost all cases due to symptoms. This includes a large group of patients who stopped the dopamine agonist due to ICD (Impulse Control Disorder) and really did not want to be on the dopamine agonist at all.

Sent: Monday, January 10, 2011 10:13 AM
Subject: Relationship between RLS and digestion

Like many of the people who have written into the RLS Support Group, I have suffered from RLS since a teenager; I'm now 46. Over the years my symptoms have appeared, diminished, vanished and reappeared repeatedly, for no apparent reason that I could determine. I could not associate my symptoms with any foods, allergies, exercise, or any any other factor. Recently, my symptoms exploded so much I sought medical advice and was prescribed Carbidopa-Levodopa (Sinemet) 25-100 mg. While the medication improved the symptoms, it didn't make them go away. I often had violent flair ups.

By accident, I may have uncovered the root cause of my symptoms.

I began to notice that when I was irregular, constipated, or needed to urinate, the symptoms were present. It was as if I could feel the tremor begin in my belly button and move down through my groin to my left leg. My irregularity was caused by a number of factors: stress, eating heavy foods (pizza, beef, etc), eating just before bed time, not eating enough fruits and vegetables, not eating enough fiber, not getting enough exercising, or -- in the course of a busy day -- simply forgetting to "go."

To get regular I began eating yogurt and a high-fiber cereal every morning. What I noticed, what that my symptoms of RLS diminished. They're not completely gone, but the symptoms are much less. I've also been able become less dependent on my prescription; using it only when needed, rather than every night.

I know that this simple remedy isn't right for everyone, but being regular has helped me a great deal. I should say, also, that I have no other medical problems. All my tests are normal and I take no other medication (except for an occasional aspirin).

Michael S.

A Medical Reply

Thanks for sharing your personal experiences living with and treating your RLS. We will post your email letter to share with other RLS sufferers.

Be careful with the Sinemet as well over 90% of RLS patients who take this drug on a daily basis will develop augmentation (a marked worsening of their RLS symptoms from taking this medication).

Sent: Tuesday, January 11, 2011 6:27 AM
Subject: Conversion chart for dopamine agonists?

I was wondering what the conversion ratio is to change from Mirapex to Requip. I had been taking .375 mg of Mirapex and don't know the Requip equivalent is.

Beverly

A Medical Reply

Mirapex is typically 2-4 more potent when compared on a mg basis. Therefore, your .375 mg of Mirapex would be equal to about .75 to 1.5 mg of Requip. There are considerable individual variations so your mileage may vary.

Sent: Tuesday, January 11, 2011 9:58 AM
Subject: Kicking legs while trying to sleep?

I¹ve struggled with what appears to be a variation of Restless Leg or Periodic Limb Movement for 15 years. I was diagnosed by the John Hopkins RLS Clinic with Nocturnal Quiescegenic Dyskinesia. The involuntary jerking or kicking is what keeps me awake. It happens while I¹m awake, without uncomfortable sensations, and without the typical movement or interval patterns of PLM. I put up a quick website with additional information and short video at www.kicking-legs.com.

I¹m a 52 year old man, otherwise healthy, and have tried 10 plus medications. I¹ve had some benefit, but it¹s followed by decreased effectiveness or augmentation. I struggle with a persistent level of fatigue. The evaluations I had before John Hopkins appeared normal (i.e. 3 neurological evaluations, 2 sleep labs, and 1 MRI).

Erik

A Medical Reply

The Nocturnal Quiescegenic Dyskinesia (NQD) has only been recently described in 2009 by the doctors at John Hopkins. I think that I may have seen a couple of patients with this disorder (hard to know whether I have seen others in the past before it was first described in a letter to the editor in Sleep Medicine in 2009) and these patients have been very hard to treat.

Whether this ends up being a true entity or an interesting variation of RLS remains to be determined. It would be hard to get better advice or therapy than from the group at Johns Hopkins.

Sent: Friday, January 14, 2011 2:35 AM
Subject: Switching RLS Medications

I am 53 year old male. I have had RLS for approximately 10 years. It originally started maybe once a week, then twice a week. It has progressively gotten worse over the years. In the last year I have noticed it effecting my arm movements and the feeling of muscle soreness. About 6 years ago my doctor prescribed MIRAPEX (.25 mg), it fixed the RLS. I have had to increase my dosage as time has gone on.

Up until last week I was taking (.75 mg) still fixing my RLS. Because of the cost of MIRAPEX, $60 month, I asked my doctor for a substitute. A new prescription for ROPINIROLE, $10 month. I stopped taking the MIRAPEX completely, switching over to the ROPINIROLE. The first couple days I took (.5 mg) but it didn't work very well. The doctor did say I could go up to (1 mg), so jumped to (1 mg) and have been taking for 2 days. The problem is now I'm awakened by jerking and twitching after only 4 hours of sleep.

Do I need to decrease the dosage of ROPINIROLE back to (.5 mg) and build up to (1 mg) if needed? Do I give the ROPINIROLE more time to allow my body to settle into it?  Should I go back to MIRAPEX and count my blessing that I have a solution to my RLS issue, with no side effect?

Tom T.
Colorado Springs, CO

A Medical Reply

It can be difficult to switch from Mirapex to Requip. Typically, Mirapex is 2-4 times more potent than Requip so you would need 1.5 to 3 mg of Requip to replace your dose of .75 mg of Mirapex. Therefore, it is not hard to understand why the lower doses of generic ropinirole have not been helping you.

Mirapex also comes in a generic pramipexole which should not cost much more than ropinirole so that is another option.

If you are having to continuously increase the dose of Mirapex, you might be developing augmentation which may become problematic.

A Reply from Tom

Sent: Thursday, January 20, 2011 5:15 AM
Subject: RE: Switching RLS Medications

I was able to get the Pramipexole. It appears to be working exactly like the Mirapex. I will be watching the augmentation issue as time goes by. I have read that low iron can cause RLS, so I may start taking an iron supplement. Maybe the iron supplement and my current .75 mg of Pramipexole can stay stable as time goes by.

Tom

A Medical Reply

Before taking iron, you should have a serum ferritin level done. If the level is greater than 50, there is no need to take supplemental iron. Also, you should not take iron without being followed by your doctor as iron overload problems may occur (although for most patients, it is very hard to get iron levels up with oral iron).

Sent: Saturday, January 15, 2011 8:34 AM
Subject: PLMD treatment?

I consulted you before about my childhood on-set RLS, which is now quite severe. I am unable to take dopamine agonist medications. After trying all of the alternatives, I am now taking methadone with excellent results. I take half (2.5 mg) a methadone 5 mg every 6-8 hours to maintain break-through level symptoms. None of the other controlled substance drugs were as successful.

My problem now is controlling PLMD. I am currently taking clonazepam, and would like to change to another medication. At 0.5 mg clonazepam at bedtime, I sleep through the night. When I reduce the dose to 0.25 mg. at bedtime, my legs jerk me awake repeatedly.

I see my physician in two weeks, and would like to have a recommendation to replace clonazepam. I am hesitant to try another benzodiazepine. Would gabapentin be a better/safer choice?

Virginia

A Medical Reply

Clonazepam is one of my least favorite drugs due to its long half-life and addictive potential. It does not decrease the PLM but rather decreases the arousals from the PLMS. The best drugs to reduce the PLMS are the dopamine agonists but you have already had problems with those drugs (perhaps you could discuss with your doctor whether a very small dose taken at bedtime may help without causing issues).

Other sleeping pills such as Ambien or Lunesta may work as well as clonazepam and are much safer. However, if you want to avoid sleeping pills, then gabapentin or Lyrica have modest effects on the PLM and may help you.

Sent: Saturday, January 15, 2011 4:28 PM
Subject: Augmentation problems

I'm coming to you for help again, because there are no specialists in this rural N.M. community who can help me. Even in Santa Fe, a two hour drive south, I have not found anyone who has been of help. In addition, although there is supposed to be a support group in Albuquerque, there are apparently no meetings, and my phone calls, maybe 5 or 6, remain unanswered. I feel totally alone in facing these RLS problems.

Which are: augmentation and possibly rebound, since a few times I have had the symptoms when I wake up in the night, and/or in the morning. Mostly, though, here's my situation. I take 1.5 mg Mirapex, which, because it stopped being totally effective a year or so ago, I supplement with 5 mg. hydrocodone. The combination of these two works --after a while-- and I sleep for about 5 or 6 hours at night, more or less.

But, there are two problems with this: One is that earlier and earlier in the day, if I sit down, or try to rest or nap, symptoms make it impossible, usually. Even occurring lately while sitting eating dinner, unusual since usually eating anything helps. Also, I get the "crazy legs" in my arms as well, even lately more than in my legs. And then, secondly, when I take the two drugs at night, I get so somnolent and "druggy", I can hardly converse, or even watch a video or read a book without falling asleep.

I am seeing a therapist, briefly I hope, his advice is to not resist it. To me, that means moving all the time, which is quite a feat in daily life. I'm going on vacation in 3 weeks, and hope I can get some resolution before that, although the warmth (Mexico) and relaxation might really help. I also feel iffy about changing medications while I'm away, so probably it should wait until we get back at the end of February.

Can you suggest someone here, or perhaps consult with my primary care physician, who is great, but has so many patients and too little time.

Gyana P.

A Medical Reply

It is often difficult for people who live in more rural areas and have medical problems that are beyond the local expertise. I do not know of anyone close to you (I am not saying that there are none, only that I am not aware of
any) who would be able to take care of your current dilemma.

It does sound like you are developing worsening augmentation (rebound is another less worrisome issue that does not really apply to your current situation). Your dose of Mirapex is very high for an RLS patient which makes augmentation even more likely.

The treatment for augmentation is to get off the offending dopamine agonist.
This of course will ratchet up your RLS to even more severe levels for a week or two which may not be handled sufficiently by the hydrocodone.
Typically, we use more potent opioids like oxycodone or methadone. You may have trouble convincing your local doctors to use these medications (however, I have described how to do it my book).

After a few weeks off the Mirapex, your RLS should return to mildly levels where you were before you started on the Mirapex and thus need less potent medication for treatment.

Changing treatments on vacation is not a good idea. I totally disagree with your therapist in that you should not give in and live with your horrible RLS symptoms. Remember, almost all RLS patients can do very well with appropriate therapy (it is just very tough getting this therapy for many RLS sufferers).

Sent: Monday, January 17, 2011 12:09 PM
Subject: My RLS

I’m a 58 year old male who has had RLS for as long as I can remember. My symptoms are what I call ‘nerve spasms’ in my knees and ankles. All in all I think I have a milder case that some on this board. Aspirin seems to work well for me. Now taking Celebrex and clonazepam which seems to help some. For me, sitting in a couched position until my legs get numb (anywhere from 5 to 15 minutes) helps me fall asleep.

Does ticklish feet follow RLS?  I’ve always had ticklish feet, and keeping my feet cool or rubbing the bottoms of my feet helps as well..

Rich G.
Green Bay, WI

A Medical Reply

There is no known association between ticklish feet and RLS nor have I heard of that before.

Sent: Monday, January 17, 2011 7:47 PM
Subject: Restless Leg Syndrome Question

I have tried all types of restless leg syndrome medicine, Opioids, Mirapex type drugs, Neurontin and Lipitor. The only thing that seems to provide relief is the Opioids. What I have been taking for the last seven years is Tramadol as it provides the best relief, Hydrocodone works but it keeps me up at night and it still doesn't work as well as the Tramadol.

In my opinion I have a very bad case of RLS. There is no such thing as fighting thru it, I can't sleep and if I do doze off of I awake in a very short period of time with horrible symptoms, it's hard to describe how bad it is but it's torture to me and I have to take medicine for relief.

It concerns me that I have to be so dependent on this medicine for any type of a normal life. I had food poisoning before and I was sick for hours and I couldn't keep anything down. So on top off all of the sickness from food poisoning I had to suffer with very bad symptoms of RLS.

I very seldom have any problems during the day and if I do they are mild enough that I can make it without medication. My symptoms come on in the evening and night when I get tired.
I have had RLS for about 10 years and the last seven have been bad, every night for the last seven years I have been taking four to six Tramadol for relief. On a normal night I will take four 50 mg Tramadol about two hours before bedtime and another two at bedtime, this provides enough relief that I am good until the next night.

Do you think it would be better for me to take Oxycodone every so often so I can get a break from taking Tramadol every day? Would the Oxycodone not keep me up at night? I think about trying Mirapex again but it scares me to think about my symptoms getting worse, I wasn't kidding when I said it feels like torture.

Bill

A Medical Reply

I am not sure why you are suggesting trying Mirapex again when it did not seem to work before (at least according to your letter)?

It is hard to know whether taking oxycodone would be better than tramadol for your RLS although you are taking a rather high dose of tramadol. You might do better by adding gabapentin or Lyrica which might help you decrease your need for painkillers.

I am not sure why you are suggesting trying Mirapex again when it did not seem to work before (at least according to your letter)?

It is hard to know whether taking oxycodone would be better than tramadol for your RLS although you are taking a rather high dose of tramadol. You might do better by adding gabapentin or Lyrica which might help you decrease your need for painkillers.

A Reply from Bill

Sent: Tuesday, January 18, 2011 3:22 AM
Subject: Re: Restless Leg Syndrome Question

I was just searching for something that might be better for my health than taking six tramadol every day. I will skip trying Mirapex again since it didn't work the first time.

Sorry I didn't state my first question very well, what I meant to ask is would it be better for my health and the effectiveness of each medication to switch back and forth between tramadol and oxycodone rather than to continue taking the Tramadol everyday, drug holiday?

The tramadol does work very well, it's just that I have to take such high doses. If I try Lyrica what dosage and frequency would you suggest? So is taking Lyrica better for my health than taking tramadol or oxycodone?

Bill

A Medical Reply

It is impossible to state what is better for your (or anyone’s) health with respect to the separate medications or combination of medications as it is so variable. For many patients who have trouble tolerating higher doses of one medication, combination therapy (like adding Lyrica) allows them to use lower doses of each medication than may be better tolerated while being effective for RLS.

Although I have had patients alternate between tramadol and oxycodone, there may not be any real benefit to doing so (this is really an unexplored area of medical science).

Lyrica is usually started at 50-75 mg once daily for those with symptoms in the evening (usually taken 2-3 hours before symptoms present) or twice daily for those with daytime and evening symptoms. The dose can be increased by 50-75 mg every 1-2 weeks if need typically to a maximum of about 300 mg per dose.

Sent: Wednesday, January 19, 2011 8:25 PM
Subject: Restless leg syndrome and peripheral neuropathy?

I have been diagnosed with restless leg syndrome a couple of years ago. I also had this terrible burning sensation in my hands and feet till about a month ago. But one fine day I could no longer feel this burning sensation in my hands and feet. Instead I now have this sleepy and drowsy feeling. When I stand for sometime and then suddenly sit down I feel dizzy. My legs kick when I am trying to go to sleep and when they do I can feel a sharp pain in my chest.

Could you tell me what exactly could be happening?  Can you send me a link which shows the close association between restless leg syndrome and peripheral neuropathy?

DCJ

A Medical Reply

The association between peripheral neuropathy and RLS has been documented in many medical articles. There is no explanation as to why there is an increase in RLS symptoms in patients who have peripheral neuropathy as this studies have simply observed this increase.

I have no explanation as to why you are getting dizzy or have chest pain as these are not usually (or ever?) related to RLS.

Here are some of the many articles that have found a link between neuropathy and RLS:

Sensory profile in primary restless legs syndrome and restless legs syndrome associated with small fibre neuropathy.
Gemignani F, Vitetta F.
Brain. 2010 Nov 8. [Epub ahead of print] No abstract available. PMID: 21059747

Restless legs syndrome and painful neuropathy-retrospective study. A role for nociceptive deafferentation?
Gemignani F, Brindani F, Vitetta F, Marbini A.
Pain Med. 2009 Nov;10(8):1481-6.PMID: 20021603


The numb and the restless: peripheral neuropathy and RLS.
Pourfar M, Feigin A.
Neurology. 2009 Mar 17;72(11):950-1. No abstract available. PMID: 19289734


Is there a higher risk of restless legs syndrome in peripheral neuropathy?
Hattan E, Chalk C, Postuma RB.
Neurology. 2009 Mar 17;72(11):955-60. Epub 2008 Nov 26.PMID: 19038854


Restless legs syndrome and diabetic neuropathy.
Gemignani F, Brindani F, Marbini A.
Sleep. 2008 Mar 1;31(3):307. No abstract available. PMID: 18363304

Restless legs syndrome associated with peripheral neuropathy.
Gemignani F, Brindani F.
Eur J Neurol. 2007 Jul;14(7):e9-e10. No abstract available. PMID: 17594323

The relationship between restless legs syndrome and neuropathy.
Ramchandren S, Chervin RD.
Mov Disord. 2007 Mar 15;22(4):588; author reply 589. No abstract available. PMID: 17230467


Restless legs syndrome and polyneuropathy.
Gemignani F, Brindani F, Negrotti A, Vitetta F, Alfieri S, Marbini A.
Mov Disord. 2006 Aug;21(8):1254-7.PMID: 16685701


Evidence of peripheral axonal neuropathy in primary restless legs syndrome.
Iannaccone S, Zucconi M, Marchettini P, Ferini-Strambi L, Nemni R, Quattrini A, Palazzi S, Lacerenza M, Formaglio F, Smirne S.
Mov Disord. 1995 Jan;10(1):2-9.PMID: 7885351

Sent: Thursday, January 20, 2011 3:58 PM
Subject: RLS symptoms increased after discontinuing Paxil

I have taken Paxil (10 mg) and  (30 mg) for well over 10 years. The  was prescribed for neuralgia in my face and the Paxil was prescribed for mild depression I experienced before the neuralgia was diagnosed. The doctor felt it worthwhile to leave the Paxil in place. I had my first RLS episode when I was 9 and the RLS has been pretty mild over the years. I am now 66. I have also had tinnitus for as long as I can remember. Neither the Paxil or  seemed to make my RLS or tinnitus worse. In October I consulted with my new doctor about getting off the Paxil and he had no trouble with that. He advised me how to do that. I was totally off the Paxil by mid November.

On December 13th I began to experience strange sensations during the day in my right leg which spread to my left leg and also affects my right arm. The RLS kicked in at night and has been with me ever since. I have since learned that both Paxil and  are triggers for RLS and find it rather strange that my symptoms increased drastically after I stopped the Paxil. In the past month I have been working to discontinue the  as well and am finished with that. Besides the unrelenting presence of RLS my tinnitus has also gotten louder and I am now struggling with insomnia.

I have honestly toyed with the idea of going back on Paxil and  just to see if that would help but am fearful that I could make things worse. When I spoke to my doctor last week about the RLS and my having discontinued the Paxil he didn't have an opinion. He is not a neurologist though. I am just wondering if discontinuing the Paxil could really have triggered the RLS and if restarting it would be wise. At the present time I am not on any medications for the RLS. I'm trying to cope with it in other ways for now.

Sandra

A Medical Reply

Although antidepressants such as amitriptyline and Paxil are well known to trigger RLS in many such patients, this tendency is clearly not universal. Many RLS sufferers notice no difference when on these medications while others even experience benefits for their RLS symptoms. It may be that controlling anxiety and depression improves RLS. This clearly is not a well understood phenomenon but your experience is not that unusual.

Certainly, restarting the Paxil and seeing if it improves your RLS would clarify its effect on your RLS.

Sent: Friday, January 21, 2011 11:01 PM
Subject: RLS and tramadol?

Hello I have been taking tramadol for back pain steady for a few months now and I recently stopped cold turkey and almost immediately started to experience RLS in my legs then my arms. Other cites have people complaining that this is a withdraw symptoms.

Is that true and how long will it last and how do I help it in the mean time?

Jessica

A Medical Reply

Tramadol does not cause RLS when withdrawing from taking it even if you have taken it for a long time. However, tramadol does treat RLS symptoms (which you may have had while you were taking it for back pain) and stopping it may then unmask the RLS symptoms that were being covered.

If that is the case, then the RLS will there for the long term.

A Reply from Jessica

Sent: Saturday, January 22, 2011 2:28 PM
Subject: Re: RLS and tramadol?

All the research suggests that during tramadol withdrawal you do experience rls. Even this post has people experiencing this. I am 30 years old Never have I had rls I was only on the tramodal for about 4 months I really doubt that I just happened to have contracted rls during the use of tramadol.

Jessica

A Medical Reply

If you can show me a research article that shows/suggests that tramadol can cause RLS, I would love to see it. There is one article (see below) that describes one patient who had withdrawal symptoms that the authors thought might be RLS. However, it is not clear whether the patient really had RLS as the authors are pain experts not RLS experts (in can be quite hard to properly diagnose RLS especially in acute situations like withdrawal).

There are 2 articles showing that tramadol can cause augmentation of RLS (worsening of RLS from taking a drug) but that is an entirely different issue (I have seen a few of these cases).

Hearing that tramadol causes RLS is very different from scientific articles that rigorously document the issue.

Eur J Pain.. 2000;4(3):307-11.
Acute abstinence syndrome following abrupt cessation of long-term use of tramadol (Ultram): a case study.
Freye E, Levy J.
Pain Center, Extension of the Heinrich-Heine-University of Düsseldorf, Graf-Adolf-Strasse 16, Düsseldorf, 40211, Germany.

We report on a patient who had taken the centrally acting analgesic tramadol for over 1 year. The compound had proven to be sufficient to treat her painful episodes related to fibromyalgia. Due to lack of supply while being on a trip, intake of the drug was stopped abruptly, resulting in the development of classical abstinence-like symptoms within 1 week. Abstinence-like symptoms consisted of restlessness and insomnia for which the benzodiazepine lorazepam was given. Diarrhea and abdominal cramps were treated with the peripherally active opioid loperamide, while bouts of cephalgia were treated with sumatriptan. Diffuse musculoskeletal-related pain and restless leg syndrome (RLS) were treated with dextromethorphan. All these different medications proved to be efficacious as they resulted in the cessation of symptoms. Within 1 week symptoms ceased and the patient regained her normal activities without any sequelae. Although tramadol is considered a non-habit- and non-dependence-forming analgesic, abstinence symptoms are likely to develop following abrupt cessation of intake, especially when the compound had been taken over 1 year. Therefore patients should be advised of such an effect whenever they decide to stop intake or their physician is planning to switch to another medication. To avoid abstinence-like symptoms doses should be slowly tapered down.

Augmentation of restless legs syndrome with long-term tramadol treatment.
Vetrugno R, La Morgia C, D'Angelo R, Loi D, Provini F, Plazzi G, Montagna P.
Mov Disord. 2007 Feb 15;22(3):424-7

Restless legs syndrome augmentation associated with tramadol.
Earley CJ, Allen RP.
Sleep Med. 2006 Oct;7(7):592-3.

Sent: Tue, October 19, 2010 1:30:44 AM (see previous email letter on Page 93, Monday, October 18, 2010 9:10 AM)
Subject: My RLS and Abilify!

I just wanted to share something with you that I believe is amazing. My doctor added Abilify to my other meds - a low dose of 5mg and it took my RLS away completely! I mean completely! Even the triggers I had before that would worsen them are no longer triggers. Like I mentioned before - I have had RLS since I was a little girl and it has been a major issue in my life. I just can not believe it!!!

Just wanted to share so you would be aware,
Jennifer

A Medical Reply

Prozac does not diminish dopamine. We are not sure why the SSRI antidepressants (and many other type of antidepressants) worsen RLS. However, when antidepressants are essential to the health of an RLS patient, we must use the drug and treat around the side effects.

You do have other options. One option would be to consider Mirapex. It is another dopamine agonist similar to Requip so it might cause similar side effects. Other reasonable options include anticonvulsants (Lyrica, Neurontin) or painkillers.

Sent: Monday, January 24, 2011 7:47 AM
Subject: RLS

My husband was diagnosed with type 2 diabetes about a year ago. He was good and changed his diet and exercised and lost 50 lbs. He has been off all prescription medications now for 9 months but this RLS got worse. It does not bother him during the day but when he comes home from work and sits down to relax it begins to creep in and prevents him from being able to sit still and watch TV and then sleep at night.

He saw a neurologist and tried Mirapex and gabapentin and Lyrica but none was very effective. One night out of desperation I suggested he try one of the pain pills that my daughter's oral surgeon gave her after she had her wisdom teeth removed. The drug worked great. It was Lortab 10-500 mg tablet. He told his general practitioner about the drug and how it helped and he has continued to prescribe it for him. He has taken 1 tablet at 6:00 pm and then another at around 10-11 pm daily for about 6 months now. He can relax and read and watch TV and sleep now through the night.

I am concerned though about his becoming addicted to this stuff. Should I or is he okay? He never takes it during the day and does not feel the need to take it but when he tries to not take it or only take 1 at night his symptoms come back. He also sufferers from constipation with the medicine but Phillips laxative helps and I am going to try to add Metamucil to his diet to help his. I am also concerned that he needs to take the Phillips laxative daily but I understand this is mostly all natural magnesium oxide.

Cheryl H.

A Medical Reply

For those who do not do well with dopamine agonists (Mirapex) or anticonvulsants (gabapentin, Lyrica), the opioids are typically the next choice. Therefore, the class of medication that contains Lortab is a reasonable alternative for treating RLS.

However, Lortab contains acetaminophen (Tylenol) which does not help RLS. Therefore, we prefer opioids that are in "pure" form and do not contain any other additive drugs (acetaminophen, ibuprofen or aspirin). The drugs that most specialists use are oxycodone or methadone but these are more potent so a lower dose (like 5 mg or lower) may work well. If you really want to use hydrocodone (the opioid in Lortab), you can get it pure from a compounding pharmacy but it will cost you a lot more money to have it specially made up.

Taking an opioid once daily has virtually no addictive potential (unless the person has a history of previous addiction especially to opioids). Constipation can be a problem and Phillips is reasonable choice but Miralax may be even a better and safer alternative for prolonged daily use.

Tramadol (a non-opioid although it is often classified with the opioids as it is in a class by itself) is a milder alternative treatment for RLS and has less issues with constipation.

Jan 26, 2011 05:38:51 AM
Subject: RLS and Requip?

I am hoping you can suggest an improvement on my current medications for RLS, the results are not as good as I think they could be. I am 58 year old male who has had RLS for 15+ years. I currently take 7.5 mg of Imovane at bedtime, .5 mg of Requip at 5pm (it starts like clock-work) and another .5 mg of Requip at bedtime. I sleep well until 4am when RLS wakes me from a usually sound sleep.

I experience some mild amnesia in the morning. I also experience periodic numbing and tingling in my feet similar to a frostbite. Possibly peripheral neuropathy? Any suggestions on improving the results?

Rod (Ontario, Canada)

A Medical Reply

It sounds like your RLS is doing reasonable well with your current medications except for the 4 am problem. This is likely due to the short half-life of Requip that does not cover you long enough. You can speak to your doctor about increasing your bedtime dose of Requip (to perhaps 1 mg) that may then make it more effective throughout the night. Alternatively, you could change to Mirapex which has a longer half-life/action but the it may take some trial and error to determine the correct dose.

I am not sure why you are having amnesia in the morning but if it gets worse with an increase in Requip, you may have to consider other medication.

Sent: Wednesday, January 26, 2011 1:17 PM
Subject: Neuro-stimulation for RLS

I have had RLS for a number of years and presently on Sinemet and Requip, sometimes with and sometimes without success.

I also had over active bladder as the result of prostate surgery, I was on Enablex for this but without complete success. I signed up for a study being done by Medtronic and had a wire implanted near S-3 in my spine, this is hooked to a neuro-stimulator that is implanted under the skin on my hip. I am able to control the amplitude of the signal by a remote control. And now I no longer have over active bladder, it has completely eliminated the leakage and the frequent urination that I had.

Neuro-stimulation currently treats several debilitating conditions, including: major treatment-resistant depression, epilepsy, gastroparesis, hearing loss, incontinence, chronic, untreatable pain, Parkinson’s disease, essential tremor and dystonia. Emerging and exciting areas of development include the treatment of large-population diseases and disorders, including Alzheimer’s disease, blindness, chronic migraines, morbid obesity, obsessive-compulsive disorder, paralysis, sleep apnea, stroke, and severe tinnitus, with the potential to expand to several other applications.

Since RLS is a neurological disorder, where is the control for the nerves that causes it, and do you know of any studies that are currently ongoing and do you think such a device would be helpful?

Raymond C.

A Medical Reply

There are very few studies on neuro-muscular stimulation and RLS. Therefore, it is not known whether this treatment modality would be helpful for RLS.

You should be careful using Sinemet on a daily basis as it makes RLS worse (called augmentation).

Sent: Thursday, January 27, 2011 5:15 AM
Subject: Worsening RLS?

I am a 57 year old female. I have had Restless legs for 20 years. My mother had it, my sister, both mild symptoms. My niece, also 57 years old, has the most severe case, unable to function normally. My symptoms hit me every evening about 7 pm, and torment me all night. I get some relief by taking Mirapex before bedtime. As I get older, I find the symptoms are getting worse and is taking it's toll on my overall health.

Is there any hope for me?

Denise F.

A Medical Reply

If your symptoms start at about 7 pm, then it might be better for you to take the Mirapex at about 5 pm as it takes 1-2 hours to get working (speak to your doctor before doing this). The symptoms do get worse over time but typically this is over decades rather just a few hours.

There is hope for you as almost all RLS patients can get relief from their symptoms with proper treatment.

It may be helpful to get a copy of my RLS book for patients, RLS: Coping with your sleepless nights as it goes over these issues at length. I also have an RLS book for doctors that may help guide your doctor on how to treat your RLS.

Sent: Saturday, January 29, 2011 10:20 AM
Subject: Gabapentin enacarbil?

Has gabapentin enacarbil been at all successful in treating RLS? I have read about it recently, and wonder if it might be right for me instead of Mirapex and hydrocodone. A different drug that I thought might help is Elavil, which I have  never considered before, but could that be a good one? Would you let me know your opinion about these as help for my pretty severe RLS?

Gyana P.

A Medical Reply

Gabapentin enacarbil (Horizant) may be right for you as it has been tested and found to be quite effective for RLS. However, it is still pending approval from the FDA so is not yet available. Currently regular gabapentin or Lyrica are similar choices.

Elavil typically makes RLS worse.

Sent: Tuesday, February 01, 2011 12:09 AM
Subject: Opioids/Hydrocodone for RLS?

I am 89 and have been troubled with restless legs since I was a boy. The condition has worsened as time has gone by and has been severe since about age 70. I tried all the medicines and some helped a bit but none cured the situation. Then I read the standard book on the subject, (published about four years ago) and life has changed.

My routine is as follows: I take a 10 mg hydrocodone about two in the afternoon when my legs begin to bother me, another 10 mg around nine in the evening and a 5 mg when I wake around three or four in the morning, I now sleep without problem from eleven until seven. I have changed dosage from time to time but for me nothing else works.

I have been taking hydrocodone for about four years with no noticeable side effects. Hydrocodone has been the answer for me and legs are under control. I recommend that you try it.

Robert H. M.

A Medical Reply

Hydrocodone is quite good for RLS and your routine is fairly reasonable as long as you don’t have side effects from the drug. However, hydrocodone comes only combined with acetaminophen (Tylenol) which does not help RLS so can only cause side effects over time. You could get the pure hydrocodone at a compounding pharmacy but that would be much more expensive. As an alternative, we usually prescribe a more potent opioid (oxycodone, methadone) which can be found as pure drugs.

There are also other drugs that may enable you to decrease the dose of your opioids.

Sent: Wednesday, February 02, 2011 12:20 PM
Subject: Low Dose Naltrexone (LDN) experiment

My RLS is very severe, but controlled most of the time with Methadone. Nothing else works anymore.

I've been doing a lot of research lately as usual and would like to experiment with some alternatives. If for no other reason to have a backup plan which I have nothing now. Possibly it could be helpful for other patients too.

The one I'm most interested in right now is Low Dose Naltrexone (LDN). I've read quite a few anecdotal reports on it, both good and bad. I'm quite familiar with the requirements and dosage. How would you feel about that?

Mark P.

A Medical Reply

There is very little experience and no research on the use of LDN and RLS. One of the concerns is that Naltrexone blocks the opioid receptors (it is an opioid receptor antagonist) which may actually worsen RLS. Remember, opioids (that bind to the opioid receptors) help relieve RLS symptoms so blocking these receptors should cause worsening of symptoms.

Sent: Wednesday, February 02, 2011 6:40 PM
Subject: Medications for RLS

I have had RLS since menopause. The only medications that help mask the symptoms: codeine and the synthetic painkiller Tramadol. I gained 30 pounds on gabapentin, stopped it gradually, and have now - after four months - lost 15 pounds and lowered my blood pressure to almost normal I wake up every night at 3 am and have to take 100 mg of Tramadol to get back to sleep in about half an hour. I exercise moderately, eat a low calorie balanced diet, and have less stress having retired.

But I have pains with RLS and can't sit through a movie, a concert, or flight without pain medication and lots of moving. I have found Requip and Mirapex completely unhelpful after a trial of each of several weeks separately. I do not have iron deficiency or depression, and my labs are within the normal range, but I am often tired from lack of sleep. I exercise in a special program for seniors three days a week with aerobics and strength training. I have tried acupuncture to no avail. Any further suggestions?

My doctor wants me to taper off the tramadol completely. I am unable to fall asleep without Ambien and clonazepam. I don't take any other medications, but I do use a compound pain gel which also seems to help me fall asleep and go back to sleep when I wake up with leg pains. Acupuncture did not exacerbate the RLS, but seemed to have no effect. I have not slept through a night for the past year.

Pam O.

A Medical Reply

You might do better with low doses of a more potent opioid like methadone or oxycodone. In addition, Lyrica may work better than gabapentin but may be more expensive and unfortunately may also cause weight gain.

A Reply from Pam

Sent: Thursday, February 03, 2011 5:17 AM
Subject: Re: Medications for RLS

I took Lyrica, but found that I could not get rid of the side effect of blurry vision with a therapeutic dose, even after giving it a fair amount of time. This was so severe that I couldn't drive, much less read and went away altogether when I stopped it. Which has a longer half life, oxycodone or methadone? I am now finding that I can't sleep at all after 4 am, even if I go to bed late, so I am beginning to suspect that I may have arthritis as well.

Pam O.

A Medical Reply

Typically, oxycodone lasts about 6-8 hours per dose while methadone lasts 8-10 hours. However, you can get extended release forms of oxycodone (OxyContin, which is more expensive) that will last up to 12 hours.

A Reply from Pam

Sent: Thursday, February 03, 2011 4:33 PM
Subject: Re: Medications for RLS

As Tramadol is quite helpful for my primary RLS during the daytime, I wonder if Ultram ER would be strong enough to see me through the night. If not, I will see if I can obtain an Rx. for OxyContin ER, as I feel that this might be the most efficacious.

Pam O.

A Medical Reply

Ultram ER may be a reasonable choice but it last for 24 hours (rather than the 12 hours of OxyContin). This means that you will be getting medication at times when you may not need it (such as the morning and early afternoon when RLS symptoms are decreased and most people are active enough to keep RLS symptoms at bay). My goal when treating patients is to keep the medication at the lowest dose that is needed to relieve symptoms.

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

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 94.
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