Patient letters on RLS symptoms and remedies- Page 106

 

Kicking RLS/PLMD Patient



Sent: Monday, November 11, 2013 1:24 PM
Subject: Restless Leg Syndrome and Sinemet?

I have had this for quite a while, but not every night. It drives me crazy. My doctor just put me on Levocarb and I'm not sure it really does much. I keep wondering if it goes along with rheumatoid arthritis (which I have).

There must be something a person can take to stop all the "pins and needles" every minute or so. I find Percocet is probably the only thing that allows me to get to sleep. (prescribed for pain of RA).

Joan S.

Medical Reply

There is a small link between RLS and rheumatoid arthritis in that RLS is more common in those patients. However, this link is not well understood.

Levocarb (which is most likely generic for Sinemet (carbidopa/levodopa) usually helps most RLS patients when given in correct doses but should not be taken on a daily basis as most patient will get augmentation (a severe worsening of their RLS from taking that drug).

Percocet is very helpful for RLS but there a lot of other drugs that can relieve RLS symptoms and should be tried before resorting to opioid therapy.


Sent: Wednesday, November 13, 2013 5:15 PM
Subject: FERRITIN LEVEL

I am wondering if a ferritin level of 39 could be the cause of my worsening RLS? I also take sertraline 100 mg (for yrs) and depakote ER 500 mg with Neurontin 300 mg three times a day for migraines. I have a script for Requip as RLS has been awful lately. I really hate to add another med to the mix. The Neurontin worked for me for about a yr. would an increase in this med be a better choice to start with? If yes, how much?

I have had many side effects to drugs and developed serotonin syndrome once. New medications scare me.

Kate C.

Medical Reply

It is certainly possible that taking oral iron to increase your ferritin level of 39 may improve your RLS (studies have found that increasing the ferritin above 50-75 may improve RLS symptoms). However, it is often difficult to take enough oral iron to accomplish that task.

It is also possible that taking more Neurontin may help decrease your RLS symptoms but this is a drug that has variable absorption so taking more often does not get more into your body (Horizant was designed to circumvent that issue). Therefore, it is very hard to predict how much more you (or anyone) should take to get more relief (and it is possible that taking more may not result in any benefits).

It is also likely that the sertraline (Zoloft) may be worsening your RLS (but if you really need this medication, you should not stop it).

Requip is a reasonable choice but the Neupro patch would be even better (same class of medication but has many advantages).


Sent: Monday, November 25, 2013 11:07 PM
Subject: RLS of the entire body

I have had RLS for years. I tried Mirapex many years ago, but it kept me awake all night. I take 900 mg of Neurontin at night, 600 in the morning. For many years I have taken .5 mg of Lorazepam at bedtime only. I am now having to take that earlier in the evening, with an additional dose later in the evening. I tried Requip. I was taking the starter pack. I could not sleep at all. I took it for a little over a week. My neurologist told me to stop taking it. She has offered nothing further at this point.

I can't sleep. I can barely function. I can't sit still, but I am exhausted. I also have neuropathy and leg pain, as well as tingling in my scalp and ears. I have developed Essential Tremor as well. As a pianist, this is very disconcerting as I am afraid it will destroy my ability to play. I cannot tolerate anti-depressants or any medication that affects the serotonin levels. I also can't tolerate narcotic pain medications.

I read that acupuncture might help. I also have varicose veins and have heard that sclerotherapy might be helpful. That will not solve my cosmetic problem as I actually need to have the vein stripping, but that is a risky procedure that I don't wish to have done. I would settle for resolving the RLS pain. It is on the insides of my thighs and upper calf area primarily.

I am a two time cancer survivor and am wondering if this might be a latent toxicity from chemo. I was on CMF therapy in 1984, then Adriamycin, Cytoxan and Taxol in 2000. The iron level in my blood tested normal. ANA was within normal limits. However, I take Nexium 20 mg daily which can interfere with the absorption of iron. Iron supplements make me ill. I do take a B12 supplement sublingual. I exercise and eat fairly healthy. I gained 5 pounds, which seemed to make things worse. I am 5'8" and weigh 130 pounds. I am 60 years old.

What are your thoughts on alternative therapies since drug therapies don't seem to work?

Karen C.

Medical Reply

Be careful with the Ativan (lorazepam) as tolerance develops readily and your increased need for this drug may indicate that tolerance is already occurring.

Acupuncture and varicose vein procedures do not help RLS despite the few articles (poor ones) that have shown some possible success. Most alternative therapies seem to benefit only a very few RLS patients.

Neupro may be another option if it does not cause any side effects such as causing insomnia like Mirapex and Requip. The next choice would be tramadol (low level opioid that is very often well tolerated) or more potent opioids.

Even though your iron levels are normal, we generally rely on the more sensitive serum ferritin level.


Sent: Wednesday, November 27, 2013 1:25 PM
Subject: New RLS patient

I am a 40-year old female recently diagnosed with RLS after a sleep study. The neurologist found that I moved my legs 90 times per hour, and woke up 4 times per hour. He described my case as pretty mild, and put me on a mild dose of Requip (.5 mg). Iíve used it two nights. The first night was like a miracle, and I felt amazing the next day. Last night was much less successful.

Iím wondering if or when to question proper dosing. I have a follow up visit with my PCP in a couple of weeks.

I was in a serious car accident 18 months ago, and I have ongoing back issues, and I also have (or had?) a bulging disc at L4-L5, and have continual pelvis issues (it was ďtwistedĒ in the accident) and I see the chiropractor every other week for hip adjustments. I also see a massage therapist every other week for continued pain and anxiety management (second minor car accident 12 months ago). Should I pursue my back injury as a potential cause of the RLS, or should I settle in with the meds?

My dad has RLS (and has also had 2 spine surgeries). My son has been treated for ADHD for 5 yearsÖ would it be prudent to request a sleep study for him to rule out a misdiagnosis?

Amy W.

Medical Reply

First of all, RLS cannot be diagnosed from a sleep study. RLS (now called WED for Willis-Ekbom Disease) occurs only while awake and consists of strange sensations in the legs and an irresistible urge to move the legs when at rest and is relieved by movement. What you do have is PLMS (Periodic Limb Movements in Sleep) which is separate from RLS. Although over 90% of RLS patients have PLMS, most patients who have PLMS do not have RLS (PLMS occurs often with antidepressant drugs and many other reasons).

The treatment of PLMS is very controversial and most RLS/PLMS specialists would not treat you with any medications. Although you do have a lot of PLMS during your sleep, 4 arousals per hour is actually fairly minor. Using Requip does decrease the PLMS (and PLMS associated arousals) but it may actually cause you to start experiencing real RLS (especially if you have a true family history of RLS) which may get progressively worse. I canít explain why you felt better the first night but I would predict that most nights henceforth you wonít get much benefit.

It is also doubtful that your back injury has any role in the PLMS (check to make sure that your medications are not responsible).


Sent: Tuesday, December 03, 2013 11:06 AM
Subject: restless legs

I have written to you before and I also bought your book. I'm taking 1 mg of Mirapex twice a day along with gabapentin 300 mg twice a day. I am having restless leg day and night every day. I don't get much rest. Looking through your book, I noticed that Permax can be taken in small dosage 3 or 4 times a day. I wonder if that would work for me?

Betty H.

Medical Reply

Permax is no longer available in the USA due to issues with it causing damage to heart valves so that should not be considered for RLS treatment.

The real concern with your treatment is that the Mirapex is most likely causing augmentation of your RLS (worsening from taking Mirapex) and the best treatment is to get off the medication. However, that is typically very hard to do (stopping the Mirapex will dramatically worsen the RLS for 1-2 months) and needs the expertise of a knowledgeable RLS doctor.

A Reply from Betty

Sent: Wednesday, December 04, 2013 12:08 AM
Subject: Re: restless legs

That is the problem - I have not been able to find a rls any where lost to where I live. My family doctor tries to help me but I'm 86 years old and he knows that it would really be hard for me to go the 1 or 2 month process of getting off of Mirapex. Not sure I can make by taking just oxycodone and gabapentin. Looks like I'm between a a rock and a hard place. Maybe I can try it this summer when I can get outside and walk.

Do you see any other solution?

Betty H.

Medical Reply

Oxycodone (and even better with methadone) in correct doses usually gets patients over the 1-2 months hump of withdrawal from Mirapex. However, the doctor must be willing and knowledgeable on how to do that.


Sent: Thursday, December 05, 2013 2:11 AM
Subject: Restless legs

A little about me: my name is Erin and I am 30 years old. I have recently been diagnosed with narcolepsy without cataplexy. I have suffered from restless legs for years but since starting the medication Xyrem to help me sleep at night, the RLS has gotten to be completely unbearable. The Xyrem is helping me to sleep but once it wears off, the RLS gets so bad that sleep is impossible. I have to be on a rigid schedule with the Xyrem and my last dose is taken at midnight. By 3:30 every morning I wake up with the RLS and I can't get back to sleep. My neurologist will not prescribe me any medications that help with the RLS symptoms because they are also CNS depressants and he is concerned about this combination with the Xyrem regarding interactions.

I have seriously tried everything. I stretch, I massage my legs, I go through Tiger Balm like it's my job, I have even put a bar of ivory soap under my sheets on my bed and will drink tonic water at times for the quinine. I take 500 mg of magnesium citrate, B12, 65 mg of iron, a multivitamin, vitamin C, vitamin D, and vitamin E.

I have to be up by 5:30 every weekday morning and with the complete lack of sleep due to the interference of the RLS, I'm sure you can imagine how unbelievably tired I am during the day. And I cannot nap when I get home because once I lay down to rest, my RLS comes back in full force. It's even got to the point where the restless feelings reach up to my middle back and last ALL DAY LONG!

Please tell me there's something more I can do that I am missing. I can't lose my job over sleepiness because I just started this week! It's a 45 min drive one way to work and I take Adderall XR 20 mg and 5 mg of Ritalin right before I need to leave for work and another 5 mg of Ritalin when it's time to drive home. I just don't know what to do and it is literally going to make me CRAZY if it hasn't already.

Erin H.

Medical Reply

I have several patients with both narcolepsy and RLS and have no difficulties treating them so that both conditions are doing well. Although your neurologist is somewhat correct about not wanting to use some of the RLS medications since they might increase the daytime sleepiness problem, that does not mean that RLS drugs cannot be tried to see if they affect the narcolepsy problem.

In your case, Neupro patch might be a good choice as it usually does not cause sedation (many physicians might suggest the short acting Mirapex or Requip but they have a potential to worsen RLS in the long run). If that is not helpful, then Horizant may be helpful. If Horizant causes next day sedation (even though it is taken at 6 pm), then shorter acting drugs like Lyrica may be considered. If all the above fails, then opioids should resolve your RLS problems (and most patients do not get sedation from these drugs).

Most everything that you have tried already does not help RLS (except probably as a placebo in individual cases).

A Reply from Erin

Sent: Friday, December 06, 2013 2:06 AM
Subject: Re: Restless legs

I will mention the medications you suggested to my doctor. I called him yesterday and left a message as he wasn't in the office. He is usually very good about returning my calls.

I did read somewhere that Neupro patch causes weight gain. As I am already overweight because of the narcolepsy, this is not a side effect I am willing to deal with. Is this generally a concern for most patients?

Erin H.

Medical Reply

I have only a few patients complaining of weight gain with Neupro. That is generally a smaller concern with this drug especially when compared to Horizant, gabapentin and Lyrica.

A Reply from Erin

Sent: Friday, December 06, 2013 8:06 AM
Subject: Re: Restless legs

My doctor prescribed me Neurontin. Is this something that will be effective for the restless legs?

Erin H.

Medical Reply

Neurontin (gabapentin) may help RLS but it does not work as well as Horizant (a newer and better form of gabapentin that overcomes most of gabapentin's issues which even most neurologists are not that aware of). I use gabapentin only when Horizant and Lyrica are not tolerated or covered.


Sent: Thursday, December 05, 2013 7:34 AM
Subject: RLS meds for daytime.
 
I have been on Requip for around 10 years and try to only take it before  bed. If I take it at a movie, I get sleepy. I heard that there are  some new meds out that don't cause drowsiness? I would be interested  in these during the day if needed.

June B.

Medical Reply

There are alternatives. The first to try would be tramadol which can  be taken 30-60 minutes before the movie and should last for 4-6 hours.


Sent: Friday, December 06, 2013 5:50 PM
Subject: Requip and brain trauma

Is there any research on brain trauma after getting off Requip? Memory issues, poor sleep and exhaustion, no energy, balance issues, short term memory issues, little to no emotions (flat affect), socially disconnected, aches and pains. Was told that the medication impacted brain; not the same person.

Please help with resources? Could my doctor be wrong about Requip causing brain trauma.

Wendy B.

Medical Reply

I am not sure where you heard about any possible issues with getting off Requip and brain injury or dysfunction. The only issue that occurs when getting off Requip is a marked increase in RLS symptoms (which could of course other issues such as memory problems, emotional changes, poor sleep, etc.).

If you have any of the symptoms that you are describing and not having increased RLS symptoms due to withdrawing from Requip, then there is most likely another reason for your problems (other than stopping the Requip).


Sent: Sunday, December 22, 2013 8:15 AM
Subject: 30 years of RLS

I'm 81 years old and have had RLS since I was 50. Did the same stuff you all are doing....doctors, Parkinson's disease drugs, herbs, exercise, etc. Tried them all with little or no success. Got by using OTC pain killers and surface analgesics (Activon) several times a night. Accidentally found a solution that gets me 2.5 to 4.0 hours sleep a night pretty regularly. Had a minor injury a while back and was prescribed tylenol-3 for pain. Tylenol-3 is acetaminophen + codeine. The dosage was a 30/300 mg tablet which is small. Noticed immediate improvement in my RLS. But side effects of the codeine were drowsiness and blurred vision.

When I stopped the tylenol-3 the RLS returned. Tried cutting the tylenol-3 in half. Drowsiness was reduced to acceptable level but effect on RLS was also reduced. Saw an advertisement for SalonPas....a surface analgesic patch. Gave them a try out of desperation. Placed the patches on the spot or spots where the RLS is strongest. By God it works. RLS is numbed from 2-4 hours depending on severity. I change patches at least once during the night as needed on the most severe RLS sites.

Yes I still exercise and do a lot of leg rubbing but now have something that allows me to sleep. Yes I take a narcotic drug with some side effects but life is a lot more normal now...wife seems to be happier too for some reason.

Ed in Cleveland

Medical Reply

There is nothing in SalonPas that should help RLS but it does cause some tingling so may provide some very short-lived temporary relief. It should not cause any harm (other than to your wallet) so if it works for you, there is no specific reason not to use it.


Sent: Saturday, December 28, 2013 2:41 PM
Subject: Severe RLS

I have RLS that is severe already but my pain management doctor added Sinemet into the mix. I am already taking morphine ER 60 mgs routinely every day and Vicodin as needed for break threw pain. My problem is my RLS has broken threw both and this past month being on Sinemet made it 100 times worse. I have been on Requip and Mirapex both caused the RLS to get worse. I have day and night RLS which never stops and it is also in my arms.

I have a lot of other medical problems having to do with pain but the RLS is so bad now I want to chew my arms and legs off. What do I do?.

Kerry S.

Medical Reply

Unfortunately, you are in a bad situation with respect to your RLS. Adding Sinemet, especially after having augmentation (worsening of your RLS) with Mirapex and Requip is a guarantee that this augmentation problem will recur and will be very severe (which is what you are complaining about). The treatment for your Sinemet induced augmentation is to get off the Sinemet but that will cause a marked worsening of your RLS for a few weeks or months.

Normally we treat the worsening of the RLS from stopping Sinemet with opioids but you are already on ultra high doses of morphine (not to mention additional Vicodin) so that is not really an option. Alpha 2 delta drugs like gabapentin, Horizant and Lyrica may be somewhat helpful but you will still likely have a tough time for several weeks.

You might want to consider seeing an RLS specialist as your case is difficult and other doctors (as you have already found out) have little knowledge or ability to treat tough RLS cases.


Sent: Monday, December 30, 2013 9:52 AM
Subject: RLS and knees and hips pain


I am 66 years male and safer from RLS like sensation in knees and hips at night only. I have been taking Sinemet for about 10 years but stopped because of augmentation. So I am taking Clonazepam 1mg for last 15 years. It would provide some relief , but for the last several years I wake up most nights and have to walk in order to stop the pain in my knees and hips. This happens between 10:30PM and 2:0AM. Increasing dose of clonazepam to 3mg a day did not help ether.

I do not experience RLS sensation in my leg muscles, I only feel it in my joints at night only. Although RLS was the original diagnose about 25 years ago, now some doctors negate that this is RLS in spite of CT scan of my spine and hips, X-ray of my knees as well as blood tests for B12, Iron, CRP, Rheumatoid Factor, Auto Immune came negative.

I would like to know if it possible it could be RLS or something else.

Wes A.

Medical Reply

If your symptoms occur in the evening/nighttime, are worse at rest and made better when movement (especially walking) then RLS is the most likely diagnosis. Even though you feel it in your joints, it is often difficult for RLS patients to be sure where in their legs the symptoms really occur. Since arthritis gets worse with walking and better with rest, that would be an unlikely diagnosis. Furthermore, if you got dramatically better with Sinemet (before the augmentation occurred), that should cement the diagnosis of RLS as the Sinemet does not help any other type of leg discomfort. I will bet that your current doctors will not come up with an alternative diagnosis to explain your symptoms.

Clonazepam is not really a treatment for RLS but rather helps RLS patients get to sleep. This is a medication that can cause tolerance and dependence so it is on my list of drugs NOT to use for RLS (there are much better and shorter acting sleeping pills that are much preferred). I would suggest that you stay away from the 2 approved generic drugs (Mirapex and Requip) as they can also cause augmentation. Horizant, gabapentin or Lyrica should be helpful and opioids (or tramadol) can be used alone or in conjunction with the above drugs.


Sent: Thursday, January 02, 2014 11:40 PM
Subject: Augmenting on pramipexole and tramadol in Thailand

I am a 66-year-old male, from Canada but living in Thailand. I have had WED for a few decades; diagnosed about 14 years ago. I am currently taking 0.5mg pramipexole and 100mg tramadol evenings before bedtime. I have been on that combination for 3-4 years. It is increasingly less effective at controlling my symptoms. I have more symptoms now during the daytime. I tried switching from pramipexole to the Neupro patch, but have had some problems with the patch. I agree with what you have written about the risks and limitations of DAs.

I would like to get off the DAs. I am not sure how best to do that. I have been seeing a neurologist in Bangkok, but (a) she believes in increasing the dose of DAs to whatever level controls the symptoms (she is not at all concerned with augmentation) and (b) in any event, she is emigrating to the US soon. The biggest issue for me, I think, is that I have very little chance of getting a doctor in Thailand to prescribe me an opioid, even on a short-term basis to help wean me off the DAs. Anyone who takes an opioid is a potential drug addict in their eyes.

So it seems to me that the only option, aside from returning to Canada, is to try to switch to an anticonvulsant. But how should I do that? Stop the pramipexole (and the tramadol?) and start on an anti-convulsant? Or keep taking the pramipexole and tramadol while I titrate the anti-convulsant? Any advice would be appreciated.

David G.

Medical Reply

You are correct about not increasing the pramipexole as that will provide temporary relief but will very quickly (months) add fuel to the fire of augmentation. It is clear that your neurologist has no idea about treating RLS.

You might try to add gabapentin or Lyrica (better than gabapentin) then try to slowly wean off the pramipexole (.125 mg every 1-2 weeks). However, that will likely be a very painful process without the aid of opioids.


Sent: Friday, January 03, 2014 7:53 AM
Subject: Augmentation

If you take a drug holiday from Pramipexole, when can you resume it? I'm waiting for an appointment with an RLS specialist, and am trying to manage my sleepless nights in the meantime.

Nicki H.

Medical Reply

Taking a drug holiday from any dopamine agonist like pramipexole can be very tricky. Stopping this drug typically causes a marked increase in RLS symptoms that may last weeks or months (or until the pramipexole is restarted). Typically, if someone is going to go through that discomfort, it is best to do so when the drug will be stopped permanently. Opioids (potent ones) are generally used to ease that transition.

Restarting the pramipexole after a drug holiday from the drug (due to augmentation) is a very poor idea as the augmentation will return very quickly and all that effort (and sleepiness nights) will have been for nothing. Once augmentation occurs, the best plan is to get off the drug permanently.


Sent: Sunday, January 05, 2014 6:27 PM
Subject: RLS

I am bipolar and have been on many different psychiatric drugs for nearly 25 years for this condition. Due to extreme reactions/allergies to some of these drugs, I slowly weaned myself off from them over a six month period. I have been off of these medications for 4 months now and I feel more in control and more stabilized than when on them. I am still, and always will be bipolar, but I feel significantly better after stopping these medications. I was also under the impression that these type of drugs, (Seroquel, Depakote, Lithium, Prozac), can exacerbate RLS; thus fueling my further desire to rid them from my body. Quite often, I feel like RLS is as distressing, or perhaps even more so than being bipolar.

Remeron and Celexa caused me to have very strong suicidal thoughts. Eventually, my favorite drug for RLS, Requip, also had the same effect on me. Are these drugs related, or as you say "in the same class"? I'm trying to get a handle on the type/class of drugs that affect me in this devastating manner so that I can take personal responsibility of what I expose myself to.

I am currently being treated by a sleep physician for RLS with Horizant, 600 mg. I have noted that one of the side effects of Horizant can be suicidal ideation, so of course this is a grave concern for me, but the RLS was so intense for me that I had to take a chance and see if it would help. My sleep physician is aware of my past drug reactions. No suicidal thoughts so far, and I have been on the drug for 5 weeks now. The results were good for 3 weeks, but the RLS symptoms are reappearing when I begin to relax and fall asleep. I wake during the night from RA pain, and the cycle with RLS begins all over again. My physician suggested taking my Horizant dose at 6:00 pm instead of 5:00, but this has not made any difference in my distress.

I also am prescribed and utilizing a Fentanyl patch, and oxycodone 5-325, 4 times a day as needed for RA pain. I take 2.5 mg. of Methotrexate and Celebrex, 400 mg. for the RA. I am a diabetic, but my sugar is very well controlled by diet and glimepiride, 2mg.

I take the lowest prescribed doses for Simvastin, Estradiol, Levothyroxin and Lisinopril. I receive monthly B-12 injections. I am 57 years old and weigh 163 pounds. I exercise 2-3 times per week on a treadmill.

Do you have any thoughts or suggestions regarding my current RLS therapy?

Sherry C.

Medical Reply

You are correct that most all of the psychiatric drugs for bipolar tend to exacerbate RLS. However, we often have to treat around these medications (despite their deleterious effects on RLS) as they are very often essential to control the serious bipolar issues.

Requip (and the other dopamine agonists, Mirapex and Neupro patch) are not related in any way to the antidepressants like Remeron and Celexa. There is a concern about suicidal issues and Horizant and you should be aware so that you can act quickly (to discontinue the Horizant) if they occur. Horizant typically peaks 6-7 hours after taking it, changing the administration by about an hour should have little impact. You may do better by increasing the dose to 2 Horizant tablets at 5-6 pm but this is beyond the FDA approved (and often insurance covered) dose and might possibly increase the risk of suicidal problems.

There is no easy answer as educated trial and error is needed to determine the correct therapy. We usually add potent opioids (as they work really well) but you are already on a very potent dose (and might be tolerant which is part of the problem).


Sent: Sunday, January 05, 2014 8:09 PM
Subject: RLS question

I have had significant SI joint pain/dysfunction for several years now. I get RLS intermittently, affecting my left leg only, (same side as SI joint pain), as a result of an acute SI episode.

Is it common, or at least are you aware of any cases such as this? Would a NSAID at bedtime help to alleviate RLS symptoms during acute SI episode?

Kim Z.

Medical Reply

RLS often occurs in only one leg (sometimes even alternates). It may also be triggered by an orthopedic pain like your SI joint pain. If the NSAID helps the joint pain, it may then indirectly help the RLS discomfort but otherwise should have no effect on the RLS symptoms.


Sent: Monday, January 06, 2014 4:51 AM
Subject: Ropinirole

I would like to begin by thanking you for your website which has been very helpful.

I have had RLS for over 10 years and it is getting worse. Iím considering taking ropinirole. What is putting me off are various reports that it can cause augmentation of symptoms after a period of time. What is your experience of this? If this does occur what can be done?

Anne B.

Medical Reply

The concern about augmentation is a very real one. For that reason, some experts (me included) recommend a maximum of 1 mg per day for ropinirole. Even at that dose or lower, augmentation may occur. If augmentation does occur, it tends to be easier to manage (typically involving the elimination of ropinirole) with lower doses than the higher ones.

For that reason, I recommend starting on Horizant (not a dopamine agonist like ropinirole) or the Neupro patch (which is a very long-acting dopamine agonist that has significantly less concerns with augmentation). These newer drugs are not generic and more expensive but may be worth it in the long run.


Sent: Wednesday, January 08, 2014 3:50 PM
Subject: RLS worse after surgery?

Can surgery on a foot increase your restless legs. The leg I has surgery seems to cause me more trouble since the surgery. I have not had that much trouble before the surgery and the legs that is giving me trouble the one that had surgery on the foot. The foot is not healed. I have a hard time finding a doctor with expertise in RLS as it is a small community.

Lorraine P.

Medical Reply

Surgery of any type may make RLS worse. The reason is not known. If your leg is still not healed and is painful, that may also be triggering increased RLS sensations in that leg.


Date: Thu, Jan 9, 2014 at 1:38 PM
Subject: RLS worse with Requip?

I am 55 and have RLS which was diagnosed 7 years ago. My initial symptoms were waking up a few times during the evening with restless legs, 3-4 times per week. A physician prescribed 1 mg of Requip in the evening which worked well for several months. After 6 months, my symptoms worsened where my legs became restless daily starting at 6:00PM until I took Requip. Several years later, my symptoms have continued to worsen where my legs become restless starting at noon, my biceps are effected during the evening and muscle cramping and pain accompany the restlessness feeling.

My dosage has increased to 2 mg of Requip per day and I take 800 mg of gabapentin which resolves the restless feeling in my arms (Requip does not help my arms and gabapentin does not help my legs). I should take more Requip but I believe that augmentation has occurred and do not want to worsen the symptoms. Is 2 mg per day considered a high dosage or do I have more upside?

Can I switch to another drug such as Mirapex to alleviate/eliminate this problem? Any other suggestions?

Bill A.

Medical Reply

You are correct about augmentation occurring and that is what is worsening your RLS. Increasing the Requip will provide temporary relief (weeks, months or longer) but will eventually add fuel to the fire of augmentation and result in worsening symptoms that require higher and higher doses of Requip. Changing to Mirapex should most likely result in the same outcome of increased augmentation.

The treatment for the augmentation is to stop all of the short acting dopamine agonists (Requip, Mirapex) so that the dopamine receptors can reset themselves (which takes weeks to months). Typically, potent opioids (oxycodone, methadone) are given during that period as the RLS symptoms will dramatically increase upon stopping the dopamine agonist for those weeks to months until the dopamine receptors reset.

The problem is finding a doctor who is knowledgeable enough and willing to prescribe those potent opioids and manage the augmentation issue.

A Reply from Bill

Sent: Thursday, January 09, 2014 6:19 PM
Subject: Re: RLS worse with Requip?

Thanks for your response.

If we presume that I stop taking Requip and I reset my body back to the way I was 7 years ago, what medicine could I take to relieve my restless legs?

Bill A.

Medical Reply

Horizant, gabapentin or Lyrica may work once your dopamine receptors have reset. However, those drugs are not sufficient to cover you while withdrawing from Requip. We often use a combination of low dose opioids and one of the above drugs.


Sent: Thursday, January 09, 2014 4:05 AM
Subject: RLS worse by stopping AD

I am from the Dutch RLS Patients Board and I received a question that I find remarkable and donít know the answer. I wonder if you could help me out.

The patient tells that she stopped fluoxetine (Prozac) at the beginning of November last year and finds that since that time her RLS is much worse instead of the opposite happening. Instead of 1 tablet Mirapex 0.125 mg she now has to take 2 or 3 and still wakes several times a night with PLMS. Her RLS has started earlier in the day and stretches to her arms as well. I know this is augmentation and I will tell her about it. But why does she have to take more Mirapex after having stopped the fluoxetine and now experiences augmentation?

Is it possible that the antidepressant could have masked her symptoms (paradoxically) in that it made her sleep better and she now experiences anxiety from missing the antidepressant? What are your thoughts?

Corrie Algera

Medical Reply

You are mostly correct. Although SSRI antidepressant drugs like fluoxetine usually worsen RLS some patients (likely the one who you are asking about) has not been adversely affected by her fluoxetine. Therefore, it is very probable that the fluoxetine was controlling her anxiety and stopping it may have increased anxiety issues. That in turn may worsen her RLS.

However, the fact that augmentation seems to be happening is somewhat unusual as she is on a low dose of Mirapex (.125 mg) and although augmentation can happen at that dose, it is much less common. There may be another exacerbating factor (drugs including over the counter, iron deficiency anemia, etc.) that certainly could be responsible for the sudden worsening of her RLS.


Sent: Thursday, January 16, 2014 9:40 PM
Subject: Neupro vs. Requip

I have suffered many years with RLS , and have taken most all the recommended first line treatments. Starting with Mirapex then switching to Requip worked wonders for me till augmentation set in. By increasing the dose of Requip I managed to suffer thru the augmentation that followed for 3 to4 years till the effectiveness got to the point where I could get relief for only a few hours.

Having found your site, I knew quitting the drug would require the use of opiates, and fortunately had a doctor who would prescribe oxycodone for me. The augmentation had caused my RLS to show up in my arms now as well as my legs, and fortunately the oxycodone was able to relieve my symptoms, allowing me to fall asleep. For the most part, I only have the symptoms at night, so I would take between 5 and 10 mg at night only before bed. Most nights this relieved or reduced the symptoms long enough for me to fall asleep even though I was, (and am still) unable to sleep more than 2 to 3 hours at a time, it was my best course of action.

I followed this procedure for 6 to 7 months each night, but stopped it all together in summer of 2013 because during the day I found myself suffering from stomach cramps, became agitated, and somewhat depressed. I came to the conclusion , right or wrong , that I was suffering minor withdrawals during the day since I was only taking the drug at night.

I stopped the oxycodone at this point, and started dealing with the RLS as best I could with hot baths and continue to do so today. I also recently have reintroduced the 5 to 10 mgs. of oxycodone on a limited basis , never taking it 2 days in a row , but using it on nights where I find myself more agitated with symptoms than normal. So far this is working with no side effects, but I would like to obtain the relief on a nightly basis if possible again.

This leads up to a few questions. Does it make any sense that my taking the oxycodone only at night at the 10 mg level could have led to the symptoms I mentioned above during the day after taking the drug for that 6 month period? Secondly, I know you seem to prefer methadone as a better opiate for use treating RLS, but my doctor is unable to prescribe it (an NY thing I guess) so would it be worthwhile trying to find another doctor that could prescribe it in place of the oxycodone?

Lastly, having had success previously with Requip until the augmentation, is there any indication now that Neupro has been on the market for some time now that this drug could be introduced without suffering the same augmentation experienced with Requip?

John

Medical Reply

I would be extremely unusual (but nothing is impossible) for oxycodone 5 mg to 10 mg taken at night to be responsible for withdrawal symptoms during the next day. Oxycodone is effective for 4-6 hours so it would also be very unlikely that your next day side effects would be due to the oxycodone (and if it were, it should occur every day after taking the oxycodone as this drug does not build up higher levels in your body at that dose). My best guess is that your daytime symptoms were not related to taking oxycodone.

Methadone works better for most RLS sufferers as it lasts longer and seems to have fewer side effects while being somewhat more effective than oxycodone. However, if you are doing well with the oxycodone, there may be no compelling reason to switch to methadone.

The last question concerning Neupro is more difficult to answer as there is little or no research available on this issue and thus I have to base this on clinical experience (which I have more than most others who treat lots of RLS cases). In my experience, augmentation is much less of an issue with Neupro at the FDA approved doses (up to 3 mg/day). However, it is not well understood as to what happens to patients with a history of augmentation from taking short-acting dopamine agonists (Mirapex/Requip) when switched to Neupro. In those cases, I would try to limit the Neupro to 2 mg/day. That often means it has to be used in combination with another drug class like alpha-2 delta drugs (Horizant, gabapentin, Lyrica) or opioids.


Sent: Saturday, January 18, 2014 4:16 AM
Subject: Can one abruptly stop pramipexole?

I am a 69 year old female and my RLS started when I was about 18. The last 3 months I have had almost 24/7 problems. I have neuropathy in my toes and balls of my feet which I take 50 mgs of Lyrica each night for and have been diagnosed as pre-diabetic. Lately, I have had to walk almost constantly which has caused pain in my hips and knees. I also have sleep apnea and use a CPAP machine.

I have been on 2 mg twice a day of ropinirole ER for the last 3 years along with the Neupro 6 mg patch. I have taken Nuvigil 250 mg every morning to combat the sleepiness from the ropinirole.

I suspect I have augmented with my Ropinirole since I starting itching violently about 6 weeks ago and the itching causes more discomfort than the RLS. Because of that my doctor prescribed Methadone, Horizant and finally pramipexole. I have been off Ropinirole for 10 days, switching to pramipexole. The itching has continued and the biggest problem now is that I am having trouble breathing and walking. I cannot use my CPAP machine lately because I cannot breath deeply enough using the mask. My blood pressure has changed with the itching from 130/70 with pulse of 70 to 148/53 with pulse of 107. I feel my heart beating heavily in my ears and I have no energy to walk any distance. I have to sit to rest and breathe heavily after any minor movement. My feet and ankles have started swelling and putting on and taking off support hose wears me out.

My doctor said I have too much dopamine in my system and to wean off the pramipexole now. When I switched to Pramipexole 10 days ago, I originally took 3 tablets of Pramipexole 0.25 daily for about 4 days with the itching increasing and my breathing worsening. My doctor switched me to 0.125 mg of Pramipexole 3 times a day to taper off of dopamine. Every time I take a dose of Pramipexole, within 15 minutes I start itching.

My doctor also prescribed hydrocodone and acetaminophen for pain and it helps me sleep at night. I take one 10 mg tablet when I go to bed and sometimes half a tablet during the day if my legs get too bad. I am off all medicine now except Lyrica, Neupro patch, Hydrocodone and Pramipexole. My doctor prescribed dronabinol (Marinol) 10 mg twice a day to help with the RLS but I have not started it yet since I didn't want to add more problems to the current ones. I want to get off all dopamine except for the Neupro patch and continue with the Lyrica, maybe the Hydrocodone if necessary and try the Dronabinol. When I don't take the pramipexole, my RLS is there but not anything I cannot live with....and then I have the Hydrocodone as a backup to RLS pain.

I still have another 2 weeks to taper off using the pramipexole and I would like to know if I can just stop it now. I breathe better and have more energy when I don't take more than 1 tablet a day of the 0.125 Pramipexole, but will I cause other heart related problems--to just abruptly stop the pramipexole?

Deane K.

Medical Reply

The issue is that you are on way too much dopamine agonist medication. The maximum dose of Neupro for RLS is 3 mg and most experts do not exceed that dose. Combined with pramipexole (the pramipexole is 2-4 times more potent than ropinirole), you are far beyond the limits for this class of drug (not to mention that you may have allergic or other side effects from the dopamine drugs).

What we normally do in your case (and please discuss this course with your doctor) is stop all the dopamine agonists (pramipexole and Neupro) and use methadone to relieve the RLS symptoms. There should be no heart or other problem related to abruptly stopping the dopamine agonists except for a marked increase in RLS symptoms. Horizant could be added but I usually wait a few months until the need for methadone has diminished. Changing to methadone and Horizant at the same time can be can be confusing if side effects occur (we canít tell which drug may be causing the side effects).


Sent: Saturday, January 25, 2014 5:58 AM
Subject: Neupro Patch

I have struggled with RLS at night due to antidepressant side effects, causing sleep issues. I have been on 30+ medication combinations. I am going to try the Neupro patch which suggests the patient wear it 24 hours a day. I would like to just put it on a few hours before bed time and then take it off when I wake up in the morning. I am thinking I don't want the medication in the day time and the drowsiness that most report. Have you heard of this working? I am currently taking bupropion SR 200 once a day.

I have tried all the other first line RLS meds and benzodiazepines with undesirable side effects.

Gary
Phoenix, AZ

Medical Reply

The Neupro patch has been designed to work best when changed every 24 hours (typically the morning). However, it should work reasonably well if used for less than a 24 hour period. It typically takes a few hours for the patch to become active when taken intermittently (regular use will result in a steady state level that keeps the drug active around the clock). You would have to experiment with the timing to make sure that it kicks in prior to bedtime. You might also need to increase to a higher strength patch to get adequate and effective blood levels of the drug with non-24 hour use.

Bupropion (Wellbutrin) is one of the few antidepressant drugs that does not cause any worsening of RLS so any RLS symptoms that you experiencing are due solely to your underlying RLS disease.


Sent: Monday, January 27, 2014 4:12 PM
Subject: Asking for Help

I am taking Mirapex for RLS. My neurologist wants to put me in the sleep department for PLMD tests. Can I have both? I know by the symptoms I have RLS but do not now if I have PLMD symptoms in my sleep.

When I go for my PLMD should I stop taking Mirapex for RLS, which keeps me awake? Mirapex helps me sleep so how are they suppose to know I have PLMD when I get sleep from Mirapex?

Juanita

Medical Reply

You are asking some very good questions. Most all RLS patients have PLMS (PLM during sleep, when the D is there instead of the S, it implies a disease state) so that is an extremely common relationship. Typically, Mirapex eliminates 90% or more of the PLM so being tested while on Mirapex will dramatically underestimate the true amount of PLMS. However, if you don't take the Mirapex, you won't be able to sleep well which would make the test very unreliable and poor quality.

However, the real question is whether any RLS patient (especially those doing well and feeling well on medication) need a sleep study to determine the PLMS in the first place. Most experts (me included) would say that a sleep study for evaluating PLMS would add no benefit and should not be done. The only reason to do a study on an RLS patient is to rule out other problems such as sleep apnea (which is very common and might co-exist with RLS) or to look for other reasons why an RLS patient is very sleepy during the daytime (and if that is not your problem, then it is quite doubtful that a sleep study would change your therapy or add any benefit for you).

Many sleep/RLS specialists do not even believe that PLMD is a real clinic entity and that PLMS should not even be treated. The true definition of PLMD is when PLMS occurs by itself (not due or associated with RLS or drug therapy) and the PLM causes such disruption of sleep that it is solely responsible for daytime sleepiness symptoms (which means as an RLS patient that you could only have PLMS, not PLMD).


Sent: Thursday, January 30, 2014 2:26 PM
Subject: Pregnancy & RLS

Hi. I'm 3 weeks away from the due date of my third child. I've been suffering with RLS since about three months into this pregnancy and it has gotten so bad that I've been sleeping no more than four hours per night for the past three months. I might be going insane. I can't nap during the day since my other two children are ages two and four years. My ob/gyn prescribed flexeril 5mg and it literally did nothing. I have some leftover Vicodin from some previous dental work and I'm tempted to try that.

Is there a better route or some current literature I might suggest to my doctor to help him help me?

Sara D.

Medical Reply

The most effective and safest drug is methadone 5 mg. Vicodin is Category C while methadone is Category B (in low dose) so therefore much safer. However, most non-RLS experts would be loathe to prescribe methadone for their pregnant patients (which is why I get a lot of these referrals).

A Reply from Sara

Sent: Friday, January 31, 2014 9:22 AM
Subject: Re: Pregnancy & RLS

Thanks for the timely response. After your suggestion, I've researched methadone, it's effectiveness, withdrawal symptoms and complications, and while it looks to be a solution to my RLS, I've decided not to suggest it to my doctor - too many anecdotal withdrawal horror stories to ignore! Thanks again for the direction. I'll deal. I feel awful for those for whom this is a chronic (as opposed to just pregnancy related) problem.

Sara D.

Medical Reply

I do understand your concerns. I have yet to see any withdrawal issues as this is more of an issue with the heroin addicts who use methadone maintenance therapy (a very different group of patients).

Normally the RLS goes away shortly after delivery but occasionally it may persists.


Sent: Friday, January 31, 2014 7:40 PM
Subject: Where to talk about severe RLS?

I don't understand when people say when their RLS gets bad and how its worse at night and so on. if I don't take my pills it is always there and not just a little, then full on debilitating , can think about nothing else or do anything. I mean if I didn't have my pills I would die. you cant stay awake for ever. I wish this got more attention and people would know how bad this isÖ.at least for me. thank God I have good doctors and they allow me to actually have a life, cause I would not have one if they did not help meÖand I mean that literally.

Are there any groups to talk about this? Anywhere to protest against doctors who do not help or believe people suffering from this?  I wish everyone out there who suffers from this relaxation and peaceful legs, and if your like me, arms too.

John

Medical Reply

Typically, RLS is as you describe earlier on in the disease when it is not so severe. As it worsens, it can occur around the clock with very severe unrelenting symptoms.

Check out the best forum at the RLS/WED Foundation at www.rls.org where you will find many very similar patients.


Sent: Tuesday, February 04, 2014 4:18 PM
Subject: RLS symptoms

I've had RLS for several years. I take 8mg slow release ropinirole at noon daily. If I forget, by evening I can't sit or lay down. I must stay on my feet and move. This dosage wears off early the next morning. It seems that a full bladder and onset of RLS symptoms go together. Does this happen to others? Is something physical (back bladder) causing my RLS. I'm 66 and very, very sick of it.

Any help appreciated. I'm a vet. When I go to the VA, I see men with no legs, so forgive me. But I would love to find a cure.

Ed V.

Medical Reply

There is no cure for RLS. However, there are lots of very good treatments. Your dose of ropinirole ER is very high and you will likely need more in the future which will in turn make your RLS worse. You should see an RLS expert as treating your case (now that you are high doses of ropinirole) will be much more difficult.

The worsening of RLS with a full bladder is very common but we do not have an explanation for that phenomenon.


Sent: Wednesday, February 05, 2014 10:12 AM
Subject: Question about Glutamate and dietary change

IĻm trying to keep up on the research. Have there been any other studies that follow up or support the RP Allen article (Neurology, May 2013) about the role of Glutamate in RLS/WED? Secondly, the Alternative Medicine community suggests inflammation is the underlying factor in RLS/WED and recommends a gluten-free and diary-free diet. Is there research or clinical experience to support this?

Erik

Medical Reply

The answer is no to both questions. Alternative medicine generally has lots of theories but they are rarely backed up by real facts/studies. Most experts do not believe that inflammation has any role in RLS (nor due anti-inflammatory drugs of any type help RLS symptoms).


Sent: Wednesday, February 12, 2014 9:09 AM
Subject: Augmentation

I have had severe RLS for15 years and I am now on .5mg pramipexole every day. Two years ago I was able to find a Doctor in Canada that was willing to use options to help get me off of the medication. At the time it was thought that it would take a few weeks to reset the dopamine in the body. I ended up having to go on a very high dose of opioids to control the symptoms. It was a nightmare and I lasted 4 weeks. I ended up going back on pramipexole after trying Requip. I also had to withdraw from the opioids. Now as predicted, augmentation has returned and I am trying to find a specialist who is willing to help me again, as my previous doctor moved out of the country. As you are aware, it is very difficult to find someone who is willing to use opioids in Canada for RLS. Could you please provide some information on the following in the management of AUGMENTATION:

1) In your experience, should the dopamine agonist be eliminated completely or reduced to lower levels? If reduced, to what dosage?
2) What dosage levels of the opioids would one need to go through this process?
3) At what point would you try to reduce the opioids and add another medication?

This information would be helpful for me in trying to find a knowledgeable doctor to help me treat my augmentation.

Beverly K.
Hopeful in Canada

Medical Reply

Typically, it may take about 2 months to reset the opioid receptors when completely off dopamine agonists. My most common strategy is to completely eliminate the DA (and never use a short-acting one again). Some experts feel that leaving a small amount of even a short-acting DA on board makes the transition to opioids easier and less opioids are needed but when I do that, I find that the opioid receptors do not reset as well as when completely eliminating the DAís.

At about 2 months or so, I give the patient the option of adding another medication (typically Horizant or Lyrica) in order to attempt to reduce or eliminate the opioids. Most patients end up on relatively small doses of opioids (and without any side effects) and opt to just stay on the opioid. I prescribe methadone up to 30 mg daily but most patients only need about 5-15 mg/day.

A Reply from Beverly


Sent: Thursday, February 13, 2014 7:30 AM
Subject: RE: Augmentation

Thank you so very much for your help and the article you sent. I so appreciate it! There are a total of 3 movement disorder specialists for all of British Columbia and I am on a waitlist for June of 2015. Hopefully I can find a regular neurologist who is willing to help me out (your article will help). I wish there was a way to be able to access your services.

Beverly K.

Medical Reply

A key issue is that even the movement disorder specialists may not be expert enough to treat your RLS. I lecture to neurologists all the time and most of them unfortunately miss the boat when it comes to treating RLS. They often want to treat it like PD and will use very high doses of pramipexole or ropinirole. Their alternative is mostly gabapentin (which has many issues and often fails) and are reluctant to use opioids (which from my experience is magnified in Canada). You might want to check with their offices to see if they actually do prescribe opioids for RLS before seeing them to avoid waiting in vain.


Sent: Saturday, February 15, 2014 9:33 PM
Subject: Please help with RLS!

I need your support please. I have RLS since 10 years. In the beginning the symptoms were low but gradually by the passage of time, it is getting worse. In few last years, the pain was at night only during summer in and hot weather now I feel severe pain at night during winters also. The pain is gradually getting worse in both legs. only massage can help to fall asleep.

I visited many doctors but none of them helped me as they did not diagnose the actual problem. Finally I search in the websites for the treatment and come across your website. Now I am taking Xanax 0.5 mg at night and feeling better with Xanax.

Mujeeb H.
Kabul, Afghanistan

Medical Reply

Xanax (alprazolam) is a sedative that is also used as a sleeping pill. It does not help RLS but it does help patients fall asleep no matter what is preventing them from sleeping (RLS, back pain, stress, etc.). Once you are asleep, the RLS (or back pain or any other condition that prevents sleep) is not an issue so as long as the Xanax keeps you asleep, you will do well. However, Xanax can be habit forming and tolerance (needing higher doses with time) may easily occur.

Furthermore, the Xanax does not take care of your daytime symptoms (unless you want to go to sleep shortly after taking the pill). Mirapex (pramipexole) or Requip (ropinirole) are likely the 2 best drugs that should be available in Afghanistan to treat your RLS. Gabapentin may also be available and often helps both the RLS and insomnia problems and may be preferred.

A Reply from Mujeeb

Sent: Sunday, February 16, 2014 7:38 PM
Subject: Re: Please help with RLS!

Thank you very much for your quick and professional feedback.

My leg pain is worse during bed time which causes insomnia. I have tried all the ways such as taking Calcium + Vitamin D3, Quit taking coffee etc. I am doing regular exercise but still the pain is getting worse day by day.

I will quit Xanax gradually and will start the one of the medicine suggested by you. Requip is available in Afghanistan. I will write you again and provide you information about the development of my RLS after taking the suggested pills.

Mujeeb H.

Medical Reply

Just make sure that you do not exceed 1 mg of Requip and you should start at .25 mg and increase the dose by .25 mg every 5-7 days ONLY if needed. Your doctors will likely want to start at higher doses and increase more quickly but have them follow the above directions.


Sent: Tuesday, February 18, 2014 6:20 AM
Subject: RLS-please help

About 3 years ago I was suffering from intense shoulder pain. My GP suggested I see an orthopedic specialist. The specialist suspected I had bursitis and put me on oxycodone. In the beginning he prescribed it for a short amount of time. Allow me to point out that at this time, I was going through a divorce and was on sick leave from work. I was getting severe anxiety attacks and was depressed and found that the oxy also helped me cope with the restlessness. I was also taking Cipralex (Lexapro here in the USA) at that time, but no longer since June 2013.

The pain in my shoulder was not subsiding and my specialist prescribed me more oxy but increased my dosage from 5 mg to now 10 mg 4 x a day. This went on for 1 year. When the prescription was up. I began having some severe RLS. I didn't know if this was because of the opioid withdrawal or my anxiety. Allow me point out that before this ordeal, I would sometimes have RLS but only about once a year. My father suffers from RLS occasionally as well. I am a 43 year old woman and mother of 2. When I was pregnant with my first son, I would get woken up with painful calf cramps but not RLS. My RLS symptoms are very frustrating and prevent me from getting any sleep. My RLS causes me to feel jerky all the time, especially at night when laying down. The urge to move my legs drive me crazy, but feel no pain.

Fast forward, I am now taking Oxyneo 2 x a day, as I take them at night for a longer lasting effect. They are 20 mg each. During the day, I am now on 10mg of oxycodone 4 x a day.

I am getting so fed up with taking these pills. I can't seem to function without them and I surely can't sleep a wink if I run out. I desperately want to get off these narcotics and was wondering what else I can take instead to relieve my RLS. Does Imodium help at all ? I tried Mirapex and Baclofen, but to no avail.

I am also wondering if my RLS is caused due to my years of taking oxycodone/Oxyneo or if I really do have RLS. How can I tell ?? If it is just a withdraw symptoms of oxy, how much time before the withdraw eases ? If I omit in taking my oxy, I always get woken up because my legs want to move despite how tired I am. I just wanted to add that taking baths, intake of vitamins, putting soap in my bed, walking around, exercising has not helped in the least.

Any information you can provide me with would be greatly appreciated. Thank you for your cooperation and understanding. I feel I am going crazy! Pleas help me, I am desperate.

Flora
Montreal, Quebec
Canada

Medical Reply

Your clinical description and family history of RLS makes it extremely likely that RLS is the correct diagnosis (and there is not much else that can produce those symptoms). However, you are taking a very large dose of oxycodone at 80 mg/day (Oxyneo is simply a slow release oxycodone preparation). That dose of opioid should typically take care of anyone's RLS symptoms but your long term use of this medication has most likely caused tolerance which has markedly decreased the effectiveness of opioids. Increasing your dose (which is what you have done over the past few years) if it becomes less effective will provide temporary relief but ultimately cause further tolerance and the need for yet higher doses.

Getting off the opioids at this point will be very difficult as any minor decrease will cause a marked increase in your RLS symptoms. Imodium may help diarrhea but has no role for treating RLS.

At this point Lyrica may help (typically, it is started at 75 mg twice daily and may be increased every 5-7 days to a maximum of 300 mg twice daily) but since it is not approved for treating RLS (although there are many studies that demonstrate how well it works for RLS), it may be fairly expensive. Gabapentin is a similar drug (and much cheaper so approval is not relevant) but has issues with getting absorbed and provides variable and unpredictable benefits. These medications may enable you to slowly decrease the amount of opioid necessary to relieve your RLS symptoms.

Another option might be to consider adding Neupro (1-3 mg/day) to the above therapy. If your serum ferritin level is below 50-75 mcg/l, then adding supplemental iron might help (oral or intravenous infusion).

A Reply from Flora

Sent: Thursday, February 20, 2014 12:43 PM
Subject: Re: RLS-please help

My general practitioner who is not very knowledgeable in RLS (in my opinion) and who doesn't seem to care or understand my frustrations, prescribed me Cipralex 20 mg a day. I feel I can deal with my depression only because I know it is directly linked to my RLS. Not knowing what the hell to do/feeling like a junkie/can't sleep at night if I don't take the oxy's, it the reason I am depressed and nothing more. I have no intentions of taking the Cipralex and I further read that it can worsened my RLS.

Do you know of any patients who have taken oxy and that switched to Lyrica or Gabapentin, and have gotten good results?

Flora

Medical Reply

When depression comes on after the onset of bothersome RLS symptoms that are not adequately treated, it is most likely due to the RLS. I usually end up being successful when taking those patients off their antidepressant medications especially once the RLS is well controlled. However, if a serious depression precedes the onset of RLS symptoms, I will continue those antidepressant medications and just treat around them.

Gabapentin or Lyrica can provide some very significant benefits for RLS patients and may be able to treat all the RLS symptoms by themselves for many patients. However, in severe cases like yours, I would estimate that by adding Lyrica or gabapentin (I do this very often but I don't switch, I just add on medication and then slowly reduce the opioids) you might be able to significantly reduce your oxy but it may be very difficult to completely eliminate your opioids.


Sent: Tuesday, February 18, 2014 11:35 PM
Subject: RLS after surgery?

Two weeks ago I underwent surgery for my scoliosis and I had stayed in the hospital for roughly four days. I had no symptoms of Restless Leg Syndrome until about three days after I got home. I was not able to walk around and I am thinking this may be the cause so the past few days I have been trying to walk to get my legs back in action but I still can not sleep at night.

Is there any advice that may help? Do you think this could progress into a serious matter?

Nicole R.

Medical Reply

It is not uncommon for major trauma or surgery (especially spine surgery) to trigger RLS. Most people have no problems for the first few days after surgery until the pain medications are stopped (as they relieve RLS symptoms) and RLS symptoms are worse with inactivity. You should have fewer symptoms as you increase your activity and are less sedentary. It is also possible that you were put on a drug that triggers RLS (check our website for a list of those drugs).

If you need treatment, drugs like Neupro and Horizant should be very helpful. It should not progress into a serious problem as treatment is currently very good for RLS.


Sent: Saturday, February 22, 2014 11:23 AM
Subject: Treatment question

Iíve had RLS since the 90s and have been on Mirapex for 10+ years. During that time, Iíve increased my Mirapex dosage to four .125 tabs daily because my symptoms have started earlier in the day and the medication has not always controlled them. I decided that what I was experiencing was augmentation and went back to my doctor for consultation.

She has prescribed 25 mg Lyrica for me. I started reducing my daily dosage of Mirapex and taking the Lyrica with it for about one and half months. Two weeks ago, I stopped the Mirapex altogether. My early afternoon and evening symptoms have stopped which seems to validate the augmentation theory.

Iíve been taking three Lyrica tablets in the evening. I have had some good nights with no symptoms or slight symptoms where Iíve been able to get back to sleep but Iíve had some absolutely terrible nights where Iíve been up all night or most of it with the symptoms not abating. Iíve then taken another Lyrica which brings me up to 4 tabs and the next day I feel like Iím drunk and worried about driving. It seems that I alternate between good and bad nights.

Iím not sure what I should be doingómore time on the Lyrica, more Lyrica, a mix of medications, or something different. My doctor is open to my suggestions but she seems to think more medication is better.

Iíve had to miss work and other events; generally, my life is really miserable right now.

Rebecca
Age 63
St. Paul, MN

Medical Reply

Most physicians have very little training in RLS and almost no training for complicated/severe RLS patients. Even many local experts lack the experience and skill to treat cases such as yours.

The issue is that although Lyrica is a very good RLS drug (especially for patients who are just starting on therapy), it is not quite adequate to treat augmentation. When dopamine agonists (Mirapex and Requip) are decreased or stopped, RLS symptoms quickly and dramatically increase. These symptoms may be helped somewhat by Lyrica but most patients would not benefit enough to be able to get completely off their dopamine agonist even at the most effective dose 300 mg. In your case, where you are limited by next day side effects of Lyrica at 100 mg, it might take you several more weeks to get up to 300 mg (and more likely that you will not get even close to the maximum dose).

The current treatment that is most commonly used is to stop the Mirapex and change to a potent opioid (methadone, oxycodone). This will completely eliminate all the RLS symptoms once the correct dose is achieved. After a month or two, Lyrica may be started and slowly increased so that the opioid may be reduced and sometimes eliminated.


Sent: Sunday, March 09, 2014 10:01 AM
Subject: Request for Advice

I am 61 years of age and have had the condition since a child, although it was then mild and the cool wrought iron of the bed would provide comfort. Today I take the maximum dosage of 4mg of Ropinirole and have severe augmentation. I wake at 4am with the condition and it continues until an hour or so after I take my Ropinirole (7pm) by which time I have watched TV for an hour or so standing and rocking whilst using hand weights to relieve the symptoms in my arms and shoulders, then drop to sleep in a matter of seconds. Walking gives relief in the day but there is a limit to how much I can simply walk. As usual, I am standing at my computer and typing as I am unable to sit due to the condition.

I was referred to a neurologist who changed my medicine from Ropinirole to Rotigotine patches. The withdrawal symptoms were torturous, no sleep for five days and nights, pacing around continuously, brought me to the stage of suicidal thoughts. I reverted to the Ropinirole. The neurologist advised me that he could help me no further and so the situation remains. I read with interest the possibility of resetting the ropinirole by taking a 'holiday' from the drug and using Methadone or OxyContin for that period. I have taken the latter before after surgery without negative effects. If you feel that such a course of action may be suitable for me then I would be grateful if you could answer these two questions:

1. How long should I take the opioid for the reset to work?
2. Given that I have sleep apnea and use an automatically adjusting CPAP machine do you feel it would be necessary for me to be hospitalized for the opioid usage period due to the possible affect on the apnea by the opioid?

Ron B.

Medical Reply

The preferred course of action is to get off the ropinirole which will reset the dopamine receptors and within a few weeks or months, your RLS should be much less severe. However, restarting a short-acting dopamine agonist again (ropinirole or pramipexole/Mirapex) has a very high risk of causing the augmentation problem all over again.

After taking methadone or oxycodone (methadone works better for most) for a few months, drugs like Horizant, Lyrica or gabapentin may be added in order to reduce or eliminate the opioids.

Opioids may worsen central sleep apnea (the much less common form of sleep apnea) but usually does not affect obstructive sleep apnea. If you do feel that taking the opioids cause next day sedation, then a repeat sleep study may be helpful.


Sent: Saturday, March 08, 2014 10:58 AM
Subject: RLS relief with cold air/water?

I live in the UK and have suffered from RLS for about ten years! it always starts in the evening about 7.30 and is like a build up of electricity flowing through my leg, it is usually the left but sometimes the right but never both! I am taking ropinirole from my doctor but it's too early to see if it works. I have a Facebook page relating to this affliction where we share ideas and remedies. I do think this condition is growing pace and starting to be recognized as a very distressing and tiresome affliction and attention is starting to be made in the medical profession, I do hope they find and effective cure that actually works.

My remedies? If it starts in bed I put my leg out and the coldness stops it in about ten minutes, this always works, my friend showers his legs in cold water which works for him too.

Graham C.
Burnley, England

Medical Reply

It is interesting that many RLS sufferers find relief with changes in temperatures. Most like a warm bath or water and some even alternate hot and cold.

Ropinirole typically works with the first few days. If that dose is not effective then a higher dose may be necessary. However, many experts (myself included) suggest that you should not take more than 1 mg per day of ropinirole as augmentation (worsening of RLS due to taking the drug) may occur.


Sent: Thursday, March 20, 2014 1:42 PM
Subject: Requip during Pregnancy

I have RLS and take 2mg of Requip every night before falling asleep. If I do not take the Requip, I am miserable and unable to sleep. I recently found out that I am pregnant and have been advised by my primary care physician not to take it. I cannot meet with my OBGYN until 8 weeks. Is it safe to take while pregnant? If not, what can I do? Are there any alternatives?

Carolyn B.

Medical Reply

Pregnancy is difficult for taking any medications and most doctors would prefer that their patients take no medications if possible. Requip is a Category C medication for pregnancy which means that it should not be taken as it has a higher than acceptable risk to the developing fetus. In addition, all the other drugs that are FDA approved for RLS are also Category C.

The only drugs that are both safe and effective for RLS during pregnancy include low dose opioids of which methadone tends to be the best. There are still issues with opioids during late pregnancy (when the RLS is typically at its worst) such neonatal respiratory depression or withdrawal but if administered by a knowledgeable RLS doctor and if you are followed by a good obstetrician and neonatologist, these concerns should be addressed and taken care of.


Sent: Thursday, March 20, 2014 3:55 PM
Subject: RLS

I have been on Mirapex for years. Recently I have had 3 surgery on my foot, I am all stressed out and I am hoping that is why Mirapex is not working, Doctor put me on a low dose of Sinemet I did not want it. But my legs were bad, What I want to know after a month can I go back to Mirapex. I am afraid to take a higher dose of Sinemet, I do not know what to do. Is Sinemet something to be concerned about?

 Lorraine P.

Medical Reply

Sinemet should not be taken on a regular basis for RLS as almost all patients will develop augmentation (worsening of RLS). You should likely see a doctor who have more expertise in treating more difficult RLS cases. It is quite common for surgeries to cause a worsening of RLS.


Sent: Thursday, March 20, 2014 7:09 PM
Subject: RLS symptoms?

Do I have RLS? I am 38 years old and I have a very hard time sitting still when trying to relax in the evening. At a movie theater, in the recliner, or in bed reading a book -- in all three cases, usually after 7pm, I can't sit still. This makes international travel difficult because I don't do well on red-eye flights. Once I fall asleep I am fine. During the day I feel fine.

It seems worst in my hamstrings, followed by my quads. I do move my feet and indeed my entire leg a lot but the hamstrings followed by the quads are where things are worst. I want to get up and stretch, but that never helps.

My doctor prescribed me Requip which I have taken a few times but I don't take it all the time (and suffer leg movements when I don't). But from reading here I may not want to take it. Does this sound like RLS? Is there anything I can do with diet? Is there a directory of good doctors that treat this (I don't live in California).

 Kyle K.

Medical Reply

Your symptoms all sound like RLS except that you state that getting up and stretching does not help. Typically, walking, stretching or any movement should provide significant relief from RLS symptoms. Otherwise, all your other features (especially the positive response to Requip) fit a diagnosis of RLS very well.

I would agree that Requip has some issues (especially at higher doses) so Horizant may be a better choice.

There is no directory of "good" RLS but there are known experts around the country (if you tell me your city, I might be able to suggest one close to you).


Sent: Sunday, March 23, 2014 9:19 AM
Subject: Long-time RLS 73-year old female

I am a 73-year-old female who has had restless legs since childhood as did my mother and maternal grandfather. My mother took Valium to help relieve her symptoms. I have taken a number of meds: Mirapex, ropinirole, Klonopin, gabapentin. Currently I take at bedtime 1800 mg of gabapentin and 3 mg ropinirole. Right now that is giving me good relief from bedtime until about 7 pm the next evening. From then on if I want to sit and watch TV, go to a concert, or a movie my RLS get very active. If I do a crossword puzzle I do not have symptoms.

I realize Iím on the high end of the dosage of ropinirole recommended for RLS and also a high dose of gabapentin. I very much would like to be proactive in thinking about what other treatment options are so that I wonít get caught in a lot of anxiety when the current meds lose the efficacy. My doctor who is a neurologist with considerable experience in treating RLS but has been reluctant to prescribe opioids although he says in his practice he has had patients who were on opioids (hydrocodone and oxycodone are his preferences) and who were able to have relief and did not need to up their dosage. If I don't take an opioid or other such medication how would I get off gabapentin and ropinirole? I realize it will be tough going for 1-2 months.

Ginny C.

Medical Reply

The issue is not so much how to get off the gabapentin but rather how to get off the ropinirole. Stopping the gabapentin might cause some worsening of your RLS but only due to not supplying enough treatment for the RLS (depending upon how much relief the gabapentin was providing and that can vary considerably). However, stopping ropinirole will cause a marked worsening of RLS that may last weeks to months. Most patients will not be able to sleep during that time.

Although there are some rare exceptions, typically only opioids (my preference is methadone) can make the transition off ropinirole painless. I would suggest first getting off the ropinirole then seeing whether decreasing or eliminating gabapentin is reasonable.

Using hydrocodone is an issue as it is always combined with acetaminophen (Tylenol) or ASA and those medications do not help RLS (and therefore can only cause harm). Oxycodone is reasonable but does not last as long as methadone or work as well.


Sent: Thursday, April 03, 2014 12:49 PM
Subject: Restless Leg Syndrome Confusion

I have suffered from this condition since I was a child (I am now 66 years old). At that time I was told it was just growing pains. I consulted several doctors without any results until 2005 when I went to see one doctor in my practice armed with a load of information I had gathered on the internet, mainly American. He then sent me to a neurologist at James Cook University Hospital England where the consultant than gave me a medication to control it. Sorry I have had so many since I cannot even remember what it was. Even then his letter to my doctor stated I had diagnosed myself as having Restless Legs and that he ďtended to agreeĒ. Eventually I ended up on Ropinirole which was gradually having to be increased.

Until joining a site called Health Unlocked I had not realized that I was on dangerously high levels and was now suffering from augmentation. My doctor although not having any real knowledge of the problem is willing to learn as we go along which when I explained about ferritin levels to him he then put me on ferrous fumarate 210 milligrams three tablets three times daily until my level reached 50 at which time he stopped them saying my levels of iron and hemoglobin were high enough. I am now on Pramipexole 0.18 milligrams three tablets three times a day. I have gained two stone in weight and I suffer from a serious sleepiness to the extent that I have fallen asleep while sitting tonging my hair or in the middle of talking to people and find it very scary.

On the 1st of April I went to see the neurologist  for my check up appointment and explained to him that while taking the iron tablets I had only a couple of times where there was a very slight sensation of the Restless Legs about to start. Before the words were completely out of my mouth he was telling me I should go back on the iron and when it kicked in to then start reducing the Pramipexole. I should state here that I don't normally suffer from Restless Legs during the night for a good number of years but during the daytime and that I suffer it in my arms too. The problem of Restless Legs is in my case a familial problem and from my father through my sibling to my children and grandchildren.

My worry now is that I have read that too much iron can lead to other health problems and is not good for you and secondly if the Pramipexole is causing such to my mind the dangerous problem of falling asleep anywhere and anytime. I really need some advice on what to do next. Is it possible to stay on iron for any real length of time or do I change to another tablet if so what would you suggest. My doctor is on holiday at the moment so for the time being I will not be changing anything. I have to wait for him to return and receive the letter from the consultant anyway.

Meantime I would really appreciate your advice as the consultant I see does seem to know a fair amount about Restless Legs but is actually more of an expert in Parkinson Disease so am not sure if he knows enough. I would be very grateful for an answer from you regarding all of this that will give me some guidance to be able to pass on to my doctor when he returns from holiday.

Joyce R.
UK

Medical Reply

Although the original recommendation for oral iron therapy was to get the ferritin levels above 50, currently we aim for above 50-75 based on a more recent study (and anyway, the 50 was just the lower limit). It is very hard (but not impossible) to get iron overload from taking oral iron as the body decreases the absorption of iron as levels increase (for example, with a serum ferritin level of 50, your body will only absorb about 2% of your oral iron intake). When we give intravenous iron therapy, we aim to get the serum ferritin between 200-300. As long as your doctor monitors your ferritin levels (every 3-6 months), you should be quite safe taking oral iron.

The real issue is that you have augmentation from the pramipexole. The most accepted treatment is to stop the pramipexole. However, without potent opioids (which are very hard to get doctors to prescribe in the UK), you can go through weeks or months of hell (often without any sleep at all). You may do better with higher iron levels for a while, but it is likely that the augmentation will get worse and you will ultimately need to get off the pramipexole. Increasing the pramipexole dose helps temporarily but eventually adds ďfuel to the fire of augmentationĒ and makes the problem much worse.

Although there are lots of very good neurologists in the UK who can treat Parkinsonís disease very well, there are very few with adequate expertise to treat tough RLS cases with augmentation (like your case).


Sent: Friday, April 04, 2014 6:16 AM
Subject: Pramipexole withdrawal

 I have tried without success to come off pramipexole , I need to come off due to severe augmentation. I have been on it for seven years in increasing doses. I currently have weaned myself down to 2 tablets a night each 0.088mg.It is very difficult even with tramadol and pregabalin know when I come off altogether it will be unbearable. Sadly in the UK they will prescribe nothing stronger. Would strong sleeping tablets help for the two week withdrawal period.

Kim W.
UK

Medical Reply

Although the pramipexole at 2 of the .088 tablets (.125 mg here is the USA) is not a very large dose, stopping it completely will cause a marked increase in your RLS symptoms. However, this worsening could last for as long as 2 months. Typically, the tramadol and pregabalin are not up to that task as you already know. Adding a sleeping pill (donít consider clonazepam) may help a little but is not the correct solution (it is like giving a sleeping pill to someone who is sleeping on a bed of nails).

As you seem to already know, you really need a potent opioid like oxycodone to make this transition painless and seamless. Without the potent opioid, it will be very difficult. You could try to wean off the pramipexole very slowly (like Ĺ of .088 mg tablet every 1-2 weeks) but that may just prolong the agony (but perhaps at a lesser degree).

A Reply from Kim W.

Sent: Sunday, April 06, 2014 9:10 AM
Subject: Mirapex withdrawal

Would you consider temgesic or fentanyl patch sufficiency powerful enough to counteract severe withdrawal worsening of restless legs (and arms!). After withdrawal would it be reasonable to try a different dopamine agonist or would this be a ridiculous thing to do?

Kim W.

Medical Reply

The fentanyl patch is not ideal for treating most RLS patients as the patch lasts 2-3 days and it is hard to adjust it to get the lowest dose. Shorter acting medications (that last 6-8 hours are typically preferred as they can be omitted when active (like shopping, touring, etc.) and often a lower dose (or nothing) suffices earlier in the day. For patients who are using fentanyl (which is a very potent opioid) for other reasons (like to control back pain), that would usually be sufficient to cover RLS discomfort also.

Temgesic (buprenorphine) is a semi-synthetic partial opioid agonist which is often used to treat pain (in combination with regular opioid) or opioid addiction. It may have some significant action for relieving RLS discomfort even from Mirapex withdrawal but we have very little experience with this drug for RLS.

Oxycodone or methadone (my choice) would be much better. However, if you are stuck and have no choices, you could try the Temgesic and see if that helps (although I suspect that it may not work near as well as the regular opioids).


Sent: Friday, April 04, 2014 6:48 AM
Subject: Re: Refractory RLS

I have experienced some stage of RLS since I was a child. At the age of 40 years old I had to start medication for RLS because I was exercising so excessively and not sleeping night after night due to symptoms. At that time I was started on Neurontin. Over the course of 15 years my physician has tried at least 15 different medications to control my symptoms. I developed Refractory RLS from the dopamine antagonist drugs. I was then started on opiates. I have gotten a second opinion from Mayo Clinic, and he suggested Oxycodone and Lyrica.

I currently take Oxycodone 20 mg every 4 hours, Lyrica 300 mg at bedtime, Xanax 1mg 3 times a day, for my RLS and Anxiety disorder. Have you known a patient to wean off of Opiates with such severe RLS? Iíve tried Horizant with no relief. I refuse to go on Methadone because of the bad information Iíve read about the medication. I hate to think at 56 years old that this is permanent, but I continue to have bad days even on the medications Iím taking. Any suggestions. I realize acceptance is the answer to all my problems. But wanted another opinion since itís been 7 years since I went to Mayo Clinic.

Kim M.

Medical Reply

It sounds as if your RLS is quite severe and you have already tried many medications. The concern here is that you dose of oxycodone is very high and you are likely experiencing both tolerance and dependence to the opioids. This presents double trouble since you need the opioids to control your RLS and stopping them would leave you with no effective treatment for the RLS.

I use methadone on the majority of my RLS patients because it is generally more effective with fewer side effects than all the other opioids for treating RLS (since a minority of my patients cannot tolerate methadone, I do use virtually all the opioids to treat RLS). It is possible that changing to methadone might enable you to decrease the overall opioid dose and better control your RLS symptoms. I am not sure what ďbadĒ information you have read about methadone (or the credibility of the sources), but as noted above, it tends to be better tolerated with fewer side effects for the majority of RLS sufferers.

There may be additional measures that might be helpful but that would require a thorough clinical evaluation/consultation.


Sent: Saturday, April 05, 2014 2:31 PM
Subject: RE: Moderate to Severe RLS

While itís been about 10 months (June 20, 2013) since I contacted you, it isnít because things have been going along great, itís just that I figured I was kind of stuck with what Iíve got. Iíve been having increasingly difficult bouts of RLS symptoms at night (running from 10-11 to 1 or later, after Iíve taken all my meds) and earlier onset of symptoms during the day and couldnít figure it out. However, I did hear something about augmentation occurring with methadone and wonder if that is whatís going on. I think Iím in the process of stopping all meds again, tonight maybe even, and seeing what happens over the next week.

Neurologist continues to think short term use of Requip/Mirapex may ease the situation short term, and has presented me with a dopamine agonist patch to try as well, but Iím leery of dopamine agonist at this point due to my augmentation issues with Requip previously. Whatís your thoughts and any new products or medications coming along?

Scott A. in the NW

Medical Reply

Augmentation does not occur with the opioids like methadone (it can occur with tramadol, but strictly speaking, tramadol is not really a true opioid). The use of short-acting dopamine agonists (even for a short time) is fraught with high risk at quickly restarting the augmentation process. The Neupro patch tends to have fewer issues with augmentation especially with the 1 and 2 mg doses.

What is not clear is why you are not doing much better. The majority of my patients (like 98% of them) would be virtually RLS free on your current treatment. To figure that out is beyond the scope of our web/email answers and would likely require a full consultation with a knowledgeable RLS expert.


Sent: Monday, April 07, 2014 1:08 AM
Subject: RLS Question

 I wonder if you could answer these; or otherwise, if I could arrange for a phone consultation between you, myself, and my doctor. I am in Fiji, and there are no local RLS specialists. I stopped taking Requip 24 days ago, I am currently taking 10 mg/day of methadone, and I am experiencing no RLS symptoms. How quickly should I reduce the methadone dosage? Do I need to get a liquid formulation of methadone so that I can reduce the dose in small steps?

For the first three weeks after stopping the Requip and increasing my methadone dose (to a peak of 20 mg/day) the methadone made me sleepy and I slept well. Since that time (methadone dose 12.5 or 10 mg/day) I have suffered insomnia, and have taken 5 or 10 mg of temazepam to help me sleep. Why does 10 mg of methadone taken at 2:00 pm plus 600 mg Gralise and 300 mg gabapentin taken after dinner cause insomnia? Is this common? What is the cause of the insomnia?

What is the best time of day to take the methadone?

My GP has studied your book Clinical Management of Restless Legs Syndrome, but she is not an expert on opiate therapy, and is concerned about the combination of 10 mg/day of methadone with 10 mg/day (or 20 mg/day) of Temazepam for insomnia: 1) That it may lead to addiction. 2) The long half life of the methadone could lead to respiration depression. 3) Would zopiclone be better than the temazepam? Zopiclone leaves a metallic taste in my mouth; unpleasant but bearable.

How can I tell when the body has ďresetĒ any augmentation caused by the Requip? Do I simply wait until I can no longer reduce the methadone dose without RLS symptoms becoming problematic.

Stephen C.

Medical Reply

After 24 days, you may be close to the full reversal of the augmentation effects of Requip. Some patients keep improving for up to 2 months. The way to test this is to decrease your methadone by 2.5 mg (1/2 of a methadone 5 mg tablet) and see if your RLS is still controlled (finer increments adjustments of methadone are not necessary). If your RLS worsens significantly then you might try again in a few weeks. If your RLS stays the same, you might try lowering the dose again in a few weeks. Most patients end up on 5-10 mg/day.

Insomnia is common amongst RLS patients and is has been found that they have problems with hyper-arousal. This may be due to elevated glutamate levels which is why drugs like gabapentin may be helpful (they lower glutamate levels which may also be why they tend to cause sleepiness). The Gralise and gabapentin may not be targeting your sleep adequately. Horizant taken at dinner time would be better (but that is most likely not available in Fiji) but Lyrica taken 2 hours or so before bedtime should have a better chance of helping your sleep (see my book for how to titrate Lyrica).

Temazepam (Restoril) may cause issues with tolerance/dependence. Zopiclone is a better choice as tolerance/dependence is less likely (try brushing your teeth immediately after taking the drug to decrease the metallic taste) but Ambien may be better tolerated to treat your insomnia.


Sent: Monday, April 07, 2014 10:25 AM
Subject: Could this be RLS?

I am a 35 yr old female and have had very strange sensations in my right arm and leg. The feeling in my leg is 'electric' all the time, with occasional twitches. It does seem to be worse at night but I feel it throughout the day too. You know the feeling when someone squeezes your thigh just above the knee and it sends a tickling sensation through the leg? That is how my whole leg feels, all the time. Torture.

As for my arm, the feeling is similar with a slight aching too. And pins & needles through my fingers and palm. My left side has not been affected at all - until last night!!! Do I have RLS? Is it possible to have RLS on one side? I have been taking sleep aides and Advil at night which seems to help, sort of. I also have a Rx for Requip - but have not started taking it yet.

I have an appt with a Neurologist in 2 months, and I have an order for an MRI. I will have to pay for all of this out of pocket, so I am trying to avoid the expensive tests. Does it make sense to try Requip to see if it helps?

I have researched many other diseases like MS, Lupus, Fibromyalgia, etc. and I don't have any of these symptoms.

Charlotte T.

Medical Reply

The key part to the diagnosis of RLS is that the strange sensations MUST be associated with an almost irresistible urge to move your legs/arms. The symptoms should only come on with rest (sitting/lying) and be relieved with movement. If you fulfill the above criteria, it is quite likely that those symptoms are due to RLS.

A Reply from Charlotte

Sent: Tuesday, April 08, 2014 11:12 AM
Subject: Re: Could this be RLS?

Yes and yes. Although I do have symptoms during the day too, they get worse at night. Tossing and turning all night. Our cat, who wants to sleep on my legs, just can't get comfy. ;) I experimented with .25mg of Requip and felt instant relief! Could this mean I indeed have RLS?

Getting to the bottom of this is almost as torturous.

Charlotte T.

Medical Reply

The very positive response to Requip typically is the icing on the cake for establishing the diagnosis (not much else would respond similarly to a low dose of Requip). You should try keep the Requip dose as low as possible to avoid problems like augmentation (a worsening of RLS from taking a dopamine agonist drug like Requip).

A Reply from Charlotte

Sent: Tuesday, April 08, 2014 6:42 PM
Subject: Re: Could this be RLS?

WOW!! THANK YOU! I feel a sense of relief just knowing that.
I only took .25mg this morning and didn't need more than that all day. I will take some before bed, but I am also going to try other natural methods.

Charlotte T.








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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 106.
http://www.rlshelp.org/rlscomp106.htm
This web site was last modified on Tuesday, April 08, 2014.
Cartoon above was created and drawn by Robert Van Den Berghe.
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