Patient letters on RLS symptoms and remedies- Page 120

Sent: Monday, April 22, 2019 4:59 AM
Subject: Where to now?

I am female, 43 years of age with Periodic Limb Movement Disorder. I experience PLMD predominantly while asleep but also have experienced it while awake (if I am un-medicated).

I have had three polysomnograms, the first of which indicated 65+ limb movements per hour. I have slept poorly as long as I remember but was only diagnosed with the condition six years ago. My 3-year old son was diagnosed with the condition around his first birthday. My identical twin sister does not have the condition. No one else in my immediate family has the condition (I am one of twelve children).

I have had three iron infusions, the last one was one week ago. Immediately prior to that I had a ferritin count of 30.
I have a familial history of low iron but no celiac disease. I am of Irish extraction.

I have been taking 300mg of pregabalin for the past 3 years but am tired of feeling spaced out all day and disconnected from people. I feel it also impairs my cognitive functioning and I require clear thinking for my line of work.
On pregabalin, I also need a minimum of 8-9 hours of sleep per night to feel okay. As a result, I decided to change medication 6 weeks ago. On the advice of my doctor, I went back to pramipexole which I had taken prior to the pregabalin (several years ago).

In the past 6 weeks I have titrated down from the pregabalin to a current dose of 50mg, while titrating up to a current dose of 0.5mg of pramipexole. I also take melatonin 6mg approx. four nights out of seven; and clonazepam the other three nights out of seven (or when I want to be assured of a good sleep).

I am finding that I am already experiencing augmentation with the pramipexole including restless leg symptoms, earlier onset of symptoms and I also experience ongoing nausea and early morning awakenings. At the same time, I have greater mental clarity.

My doctor suggested that I take a maximum of 0.5mg of pramipexole and also gave me a prescription for dipyridiamole 200mg (slow release) to take at the same time. I wanted to come off the pregabalin before introducing another medication (dipyridiamole) as I’m nervous about taking multiple medications simultaneously. However I have found that the current combination of pramipexole and pregabalin aren’t working (without having introduced the dipyridiamole) and I’m wondering what to do now.

My doctor is not keen on opioids however is not entirely against them. I took Tramadol 50mg on one occasion but experienced a night of complete sleeplessness and hallucinations.

Are you able to suggest what approach I should try now?

A Medical Reply

Anna O.
Perth, Western Australia

It is somewhat difficult to answer your questions fully through email (your case may be a little more complex than the average case and I do not like to give too much advice when the potential for giving incorrect advice is high.

It sounds like you only had frequent PLM without any RLS symptoms initially (before pramipexole). PLM are of course very common in RLS patients but also occur frequently due to other reasons such as medication (SSRI and SNRI antidepressants and many others) and certain other medical conditions. If so, the PLM may not be linked to RLS.

It is very controversial whether PLM alone (without RLS) should be treated at all. Even though frequent PLM can be documented on a sleep study, that does not mean that they are causing your daytime fatigue/sleepiness symptoms (even though that seem incredibly logical). Studies have shown that there is no correlation between frequent PLM and next day symptoms. That is why I normally do not like to treat PLM.

I have seen very few (rare) cases on any benefit from treating PLM and instead I see worsening daytime symptoms as in your case. Patients who experience wake PLM are very much more likely to have RLS (which may only manifest at a later date) so treating with pramipexole may cause augmentation with an increase in PLM and new RLS symptoms (as in your case which is another great reason for not treating PLM).

My best general advice would be to slowly get off all the PLM/RLS medication and leave your PLM alone. Although opioids do very little for PLM, you might consider using them if your RLS gets severe enough to warrant drug treatment.

Dipyridamole is not ready for prime time for RLS and definitely not for PLM.

The melatonin is reasonable but the clonazepam is a poor choice as a sleeping pill since it has over a 40 hour half-life so it quickly adds to daytime sedation. There are many much shorter acting sleeping pills (with half-lives of 2-10 hours) that will work as well but not increase the risk of daytime sedation.

Sent: Monday, April 22, 2019 7:10 AM
Subject: CBD and RLS

Is there any research concerning taking CBD alone or in concert with another medication to control RLS?

Jim D.

A Medical Reply

This is no research. Only scattered patient anecdotal reports with variable to low success.

Sent: Thursday, April 25, 2019 1:30 AM
Subject: Restless legs Pregnancy

I as referred to you for some help and I’m hoping you can direct me. I have suffered from restless legs for years and I take Sifrol. I have stopped Sifrol advised by the doctor but the withdrawals are so bad my legs jolt every few minutes and I haven’t slept in days and I’m falling apart.

Is there anything you can recommend ?

Simone C.

A Medical Reply

Pregnancy typically makes RLS worse, especially in the third trimester. Your doctor is correct about stopping the Sifrol (pramipexole) as it is not safe for the developing fetus.

However, stopping the pramipexole will cause a marked worsening of your RLS (I guess you have already figured that out) that may last about 2 weeks before it calms down (most patients get no sleep during that period). It usually get somewhat better at about 2 weeks but will still need treatment (and even more so during the third trimester).

You may do ok with a combination of Sinemet and clonazepam but if symptoms remain uncontrolled, opioids like oxycodone (I prefer methadone) at low dose can be very effective and safe.

Sent: Thursday, April 25, 2019 8:50 AM
Subject: Methadone side effects?

First a quick update: I am now quite stable on 10 mg methadone (6 PM), and 1500 mg gabapentin (1200 at 8:30, 300 at 9:30). This regimen completely controls my RLS symptoms (which are evening and night only) almost all the time.
Last February, I finally got off of my 2 mg rotigotine, the last of the DAs, all of which I have augmented on. Getting off rotigotine was pretty rough (I tapered off over 3 weeks), and lasted several weeks after the last dose. That was helped a lot by 15 mg methadone, and even 20 mg for the first several days.
I have also had two iron infusions (1000 mg InjectaFer, last August, then last December), which got my ferritin up to ~350. Those also are helping a lot.

My question: I've been losing more weight than normal for me over the last 6 months (20 lbs, now at 177 lbs). I've also developed heart palpitations (skipped beats, primarily) over the last month or two. Previously, at age 70, I had been in quite good health, exercising a lot and eating healthy food. I'm wearing a heart monitor patch for a week, and will be seeing a cardiologist and a gastroenterologist in the coming weeks.

Is it possible that the weight loss and/or heart palpitations could be side effects of methadone? I had gone from 5 mg to 10 mg methadone (while still on Neupro) around the time my weight loss started to increase, 6 months ago. I don't recall if there were heart palpitations then, but I definitely noticed them around end of February, around the time my Neupro withdrawal was pretty much over.
I really hope not, since methadone has been a life-saver for me, and has almost no other side effects.

Peter W.

A Medical Reply

It is quite unusual for methadone to cause weight loss unless it causes nausea and decreased appetite which of course would be quite obvious. I would suspect another reason for the weight loss. Let us know what the gastroenterologist finds (if anything).

Methadone should also not cause palpitations or skipped beats. However, your cardiologist should be able to sort this out. If for some reason methadone is the culprit for any of your new problems, there are lots of other opioids available that should relieve your RLS symptoms and are different enough from methadone (so that they would not always cause the same side effects).

Sent: Tuesday, April 30, 2019 4:23 AM
Subject: RLS treatment with codeine?

I emailed you about June last year enquiring about taking oxycodone (extended release). I had been taking codeine 30 mg. at night for some years which had kept me reasonably well but then symptoms became more severe and I had tried 45 - 60 mg. Codeine at night. I then asked you about trying oxycodone (slow release) and I tried 5 mg at night which worked well at first – upping this after a few weeks at your suggestion to 10 mg.

After the first dose of 10 mg I had a bad migraine (I sometimes get confusion in speech as an aura which clears after l5 minutes. This was possibly not due to the oxycodone but I went back onto the codeine at that stage just in case. As the year progressed so did the severity of my RLS so I decided to give the oxycodone another trial and I have found that 10 mg at night enables me to get 4 – 5 hours broken sleep (which is a good amount for me) and the rest of the night I can rest well just lying still. Codeine 60 mg. taken at bedtime does not now help the RLS and seems to stop me getting to sleep. (I tried this again to see if I would get a better response).

I am due to see my doctor at the end of May so want to be prepared to put my case. Because the oxycodone is extended release this means I am not covered for the whole day. Should I be taking the tablet twice a day for better coverage of daytime breakthrough? If so would I be better to take 5 mg. twice a day. What are your suggestions?

I get symptoms every day anytime from lunchtime onwards if I am sitting and I also suffer symptoms in my arms. The oxycodone does not seem to be causing side effects other than slight shakiness on rising which settles and does not really bother me. By the way I am 77 year old female on no other tablets except 75 mg. aspirin daily for the migraine (to keep platelets thin).

Is there any difference from a health point of view between taking codeine and oxycodone? Which one would be better?

Barbara K.

A Medical Reply

Codeine is much less potent than oxycodone. Roughly 5 mg of oxycodone is like 75 mg of codeine which means that you are taking somewhat more potent doses of oxycodone than when you were taking codeine. However, your dose of oxycodone is still quite low and is well below doses that cause tolerance, dependence and addiction.

Your choices to treat your daytime RLS would be to take an extra dose of 5 mg of oxycodone earlier in the day which would still be a reasonable total daytime dose of oxycodone. You could also try dividing the current oxycodone dose to 5 mg twice daily as you suggested but I suspect that the dose may not be adequate (but only trial and error can confirm that). Another alternative would be to take tramadol earlier in the day (but only when you know that you will be sedentary).

Another choice would be to add gabapentin in the afternoon (as long as it does not make you sleepy) and perhaps even another dose a few hours before bedtime (which might help you reduce your evening dose of oxycodone to 5 mg and also helps sleep).

As you can see, there are several choices to try and find out which works best for you.

Sent: Sunday, May 5, 2019 5:55 PM
Subject: Help for severe RLS

I am at my wits end. My RLS and PLMD have made my life miserable. I get very little sleep at night and fall asleep with almost no notice during the day. I am a 76 year old male who has suffered with these ailments for about 30 years and I began treatment with dopamine agonists in 2004, eventually reaching over 2 mg. per day of pramipexole. I was experiencing augmentation and have since reduced this drug to between .375 and .75 mg. but my suffering with the RLS has increased dramatically.

I am currently with Kaiser Permanente in Washington State and my doctor started out with 5 mg. of oxycodone and has recently increased it to 10 mg. but even though it works wonderfully while it lasts, it doesn’t provide enough all day relief to prevent further daily occurrences of RLS. When I asked my current doctor about using methadone, he said I would have to get it from a clinic. I sense some reluctance on his part to increasing the dosage of opioids or using anything but oxycodone.

I’m very frustrated as is my wife because her sleep is greatly compromised at night because of my thrashing around. Can you please help me?

Paul B.

A Medical Reply

The low doses of oxycodone might be effective but only once you get off the pramipexole. As long as you stay on the pramipexole, it is likely that your RLS will get worse with time and you will need even more opioids.

However, as you already know, decreasing pramipexole and getting off them is very difficult and you will need more opioids during that time but ultimately, you will need less in the long run (often after a few weeks).

Methadone does work better but often oxycodone will do the job. You can also the longer acting form of oxycodone, OxyContin.

Attached is the article that was published by several of us RLS specialists that discusses how to treat augmentation with opioids that you can share with your doctor. However, most doctors are very reluctant to learn about RLS and to treat it with opioids.

Sent: Sunday, May 12, 2019 7:20 AM
Subject: Gabapentin and Pregabalin

I am an elderly lady in my late seventies and have been suffering with RLS for about thirty five years (Severely for the last fifteen years). The Neupro patch worked very well for me for several years until I suffered from augmentation. I have been prescribed Gabapentin for the past three or four years.

 I am suffering with very troublesome side effects and would like to try Pregabalin capsules. I am taking 400mg of Gabapentin per day and would like to discontinue the Gabapentin and replace with the Pregabalin. Would you kindly advise me what strength of Pregabalin I should take?

Diane S.

A Medical Reply

It is not always easy to find the exact equivalent dose of pregabalin (Lyrica) to replace gabapentin. This is because gabapentin has variable absorption (especially as the dose is increased) while pregabalin has predictable absorption. Typically, 400 mg of gabapentin might be somewhat similar to about 75-150 mg of pregabalin (however, only trial and error can determine your exact equivalent dose).

However, the more important issue here is that the side effects (typically sedation, dizziness, etc.) may occur even worse with pregabalin as it gets better absorbed and may be more effective (for both RLS and side effects).

Sent: Thursday, May 16, 2019 2:36 PM
Subject: RLS and Mirapex or Requip

I have had RLS for 40 years. This has been my experience.

It gets worse with age.
It involves arms and hands as well as .legs and feet. Can involve my back.
Ice and or heat can be helpful.
It never quite goes away but is definitely much worse at night.

NEVER TAKE MIRAPEX

I was prescribed Mirapex...it gave me rebound. And it made me OCD..read the labels...please. I stopped the Mirapex and the OCD went away. SSRI's and SNRI's make it worse.

The only things that help me are
Narcotics and/or benzos

Please as a patient use the web to research RLS

I used to walk 4miles midnight till 3am...I am now in a wheelchair for additional health issues so that is no longer possible for me.

Carol M.

A Medical Reply

We are trying to get doctors to not prescribe Mirapex or Requip for RLS patients as they cause both impulse control disorders and augmentation. However, they are the most prescribed RLS medications as of now.

Opioids can be very effective for RLS and very safe if used at low doses.

Sent: Tuesday, May 21, 2019 10:53 PM
Subject: Switch from oxycodone to methadone

I have written to you several times in the past about dealing with my RLS, and you have been gracious enough to reply, so I am hoping I can impose on you one more time for your help. I live in upstate NY and have had a difficult time finding any RLS specialists to help me deal with my disease. Fortunately , my doctor has been exceptionally receptive to any information that I have gathered over the years from online papers and specialists like yourself.

I have gone thru all the normal approaches, ie Requip, Mirapex , which lead to augmentation, and am currently using oxycodone to relieve my symptoms. I am 71 years old , and have been very active my entire life, so dealing with my rls, especially after Requip, has only been necessary in the evening and overnight. I have no plans to change this ,refusing to take anymore of the opiate than is necessary to reduce my symptoms, but because I have become a bit more sedentary earlier in the evening, my symptoms generally appear around 5 or 6 pm , and continue if not treated thru the night.

Currently I take 5 mg at 5pm or so, an additional 5 mg at 9 pm, then on and off an additional 2.5 before retiring between 11 and 12 as needed, and take a hot bath. This has been fairly effective, at least until just recently , when I had my knee replaced 4 weeks ago. I have had a difficult time controlling symptoms since the surgery, which I hope will settle back down as the knee heals further. I know from reading many of the research papers, and from all the patient letters, that methadone is considered a bit more effective than oxycodone , so I thought it would be a good time to meet with my doctor again, to see if he would be receptive to switching to the methadone , at least on a trial basis to see if it can control my symptoms better. I am not aware if prescribing methadone is more difficult than that of oxycodone, but based on what I am currently taking, could you give me an equivalent amount of methadone and time to take it to substitute for the Oxycodone. This will at least give me the opportunity to discuss it with my doctor.

Again I am truly grateful for your willingness to answer the patient letters. Living with this affliction is truly a life altering experience, and I do not know what I would do if the opiates were not available to give me some relief.

John E.

A Medical Reply

For most RLS patients, methadone is the most effective opioid to relieve symptoms (although a small percentage of patients get better relief with other opioids). My suggestion (to discuss with your doctor) is to just take methadone 5 mg around 5pm and another 5 mg at about 9-10 pm. Although this is a little higher opioid equivalent dose than what you are currently taking, it should work quite well. If you have absolutely no RLS symptoms with this regimen, you can cut the earlier pill in ½ and see if that works. You can also try that with the later dose if you still have good RLS relief after reducing the earlier dose.

Methadone should be no harder to get than oxycodone except that it may not be stocked as well as the oxycodone so some pharmacies may have to order it in (usually takes only a few days and once they know you pick it up every 4 weeks, they should have it on hand for you).

A Reply from John

Sent: Monday, October 7, 2019 7:32 AM
Subject: Re: Switch from oxycodone to methadone

Just a quick update as I realize your time is valuable. Just wanted to confirm the results I am still getting from the switch from oxycodone to methadone.

I am still living the dream ,taking a total of 5 milligrams at night, 2.5 at 6 o’clock and 2.5 at 9:30. Sleep has been remarkably better, feeling more rested than on any previous treatment other than Requip till augmentation set in. Sensations can come on occasionally at night if sitting for long periods of time ,but they can then go away on their own. I can lay in bed and fall asleep without sensations disturbing me , and frequently can sleep thru the night that was previously unheard of on oxycodone.

Daytime occurrences of RLS are also dramatically reduced, where sitting and doing activities such as reading would bring on sensations, this has been eliminated or at least reduced considerably.

The reason for this letter is to give you any information as to continuing results of methadone treatment ,should this help in any ongoing research you might be doing on the treatment of RLS. Barring a cure for this ailment, this is as good as I could hope for in dealing with my RLS.

Thank you so much for all your help
John E.

Sent: Wednesday, May 22, 2019 10:53 AM
Subject: OK to take Motegrity?

I have very severe & chronic constipation; just screamed my way through a proctological exam & might need an anoplasty if a new med doesn't work.

The doc prescribed Motegrity, a brand new medication (in addition to the Linzess and Amatiza I already take). It seems to have something to do with serotonin. Any chance it might make my RLS worse?

He also prescribed Valium, apparently to relax the rectum & anus; is that OK for RLS, too?

My constipation originated with methadone, which I've taken ~5 years after trying everything else available at the time. Without it, my entire body (mostly legs, but also arms and trunk) jerks every 8 seconds or so. Has any new medication appeared I might be able to switch to? I'm now 72 years old. I love methadone, but the constipation is a horror show.

Sharon S.

A Medical Reply

I am not that familiar with Motegrity but it does act upon the serotonin receptors (although quite specifically) and drugs that increase natural serotonin (like most antidepressant medications) worsen RLS. I cannot say whether this variation of a serotonin drug will worsen RLS so only trial and error may determine this issue.

There is a new option of opioid for treating RLS that I have been using called Belbuca (buprenorphine). It is a different type of opioid that at high doses (way above RLS doses) acts as a dopamine antagonist (like naloxone) to reverse the opioid effects (you could not overdose with this drug). It is schedule III so refills can be included in the prescription. So far, in my experience, constipation has not been an issue with this new drug (but anything is possible) The major downside is that it is only available in brand name so coverage and cost may be an issue.

Converting from methadone to Belbuca may require some expertise.

A Reply from Sharon

Sent: Wednesday, June 5, 2019 12:05 PM
Subject: Belbuca vs codeine...

Just heard back from my sleep doc. He said he cannot switch me from methadone to Belbuca because 1) it can be used only for patients being treated for opioid dependence and thus insurance would not pay for it; and 2) there is "no evidence" that it is effective for RLS.

Could you possibly send me citations of research articles that provide evidence that it is effective for RLS?

Our insurance is Martin's Point/US Family Health, not Medicare. I just checked their website, and it looks like they'd cover a 90-day supply of any strength of Belbuca for a $53 co-pay, which we could easily afford. The prescribing doc would need to fill out a medical necessity form explaining why I couldn't take any of these instead: "tramadol IR (Ultram, generics), buprenorphine transdermal (Butrans), buprenorphine sublingual (Subutex), butorphanol intranasal (Stadol), pentazocine/naloxone (Talwin NX), tramadol ODT(Rybix)."

But I'm very concerned that my sleep doc might put me through a transition from methadone to some other medication just as brutally as he switched me from dopamine agonists to methadone (weeks of 24/7 jerking, my pleas for help ignored).

My sleep doc did say he might be willing to switch me from methadone to codeine. In your experience, has codeine been effective for severe RLS in elderly people (I'm 72), without causing constipation? Though I currently take Linzess, Amitiza, Motegrity, Senna, and a suppository every day, severe and chronic constipation--to the point of a possible angioplasty for internal scars and fissures--is driving my desire to switch from methadone, which in other respects has been working very well. (A few years ago I developed an intestinal blockage so severe that trauma memories still linger.) It frightens me that my sleep doc could so casually suggest codeine, which I suspect would have the same constipating effect.

Do you ever consult in person with patients who travel to your office from out of state? I live in Maine, and cannot fly even when heavily medicated due to jerking, but my husband and I could take a train to LA and rent a car and get to Downey (I grew up in Santa Monica). We could manage this once a year, if that would be acceptable to you.

Getting to the end of my rope and hoping to grow some more rope...

Sharon S.

A Medical Reply

Your doctor is incorrect about Belbuca being indicated only for opioid dependence. It does contain buprenorphine and is approved to treat pain (which includes RLS pain). Your doctor is confusing the drug with Suboxone (which contains buprenorphine and naloxone) which is approved only to treat opioid dependence. Despite this indication (and likely insurance issue), Dr. Chris Earley at Johns Hopkins uses Suboxone to treat RLS (he is the only one in the world who does this).

I chose to use the pure buprenorphine (Belbuca) instead of Suboxone due to insurance and FDA indication issues and it is quite likely that I am the only one anywhere who is using this drug to treat RLS., There is currently no articles in the literature to support the use of Belbuca until I publish my experience with the drug. I have many successful cases already and as soon as I get sufficient time, I will publish my results.

So far, I have found Belbuca to be quite effective for treating RLS but it causes much fewer side effects (including constipation). This of course may vary from patient to patient but so far it has been very promising in patients who could not tolerate other opioids. In addition, it is a schedule 3 drug which means that it is safer and we can write it with several refills.

Codeine is much less potent for treating RLS and may cause less constipation due to the decreased potency (but may not relieve your RLS symptoms adequately just as taking a lot less methadone may not cause as much constipation but may also not help your RLS). I do use codeine but only in very mild RLS cases. The issue with your sleep doctor recommending this treatment is most probably due to lack of familiarity with severe RLS patients.

I see many out of state patients from coast to coast but I do require a once a year in person visit to keep prescribing opioids.

Sent: Friday, May 24, 2019 4:45 AM
Subject: Pregabalin Question

Good Morning from the UK,

I have a question regarding Pregabalin, which I have been taking for RLS since July 2014,

I have been taking 75MG just before bed time since July 2014, I had RLS 24/7 which prompted me to get a diagnosis, This helped reduce my symptoms by about 80-90%, allowing me to sleep great and work during the day,

A few times I have had a blip with the medication were it stopped being effective for a month here and there, only reducing my symptoms by about 60% in these instances, I would add a morning 75MG dose in times like these for 7-10 days until I seen gradual improvement, before going back to the one at night again until my symptoms were reduced by 80-90% again,

However, over a month ago my symptoms have became very prominent, as the Pregabalin only now works to reduce the symptoms by about 20% at best, interrupting sleep, on a good night I sleep for about 2-3 hours, and on a bad night maybe one hour or not at all,

My GP prescribed me a higher dose of 150MG of pregabalin to take at night and to continue to take the 75MG dose in the morning, which I have done,

I have been on this regime since Tuesday May 7th, so just shy of three weeks, but cant say I've noticed an improvement in my symptoms yet,

How long should this increased dose in Pregabalin take to take effect?

Is there a chance it may not work at all?

Cahir M.

A Medical Reply

What you have done with altering your treatment is quite reasonable. I usually don’t recommend treating with pregabalin in the morning since RLS symptoms should be at their least at that time. I typically suggest treating only in the evening to prevent the RLS from getting worse and daytime pregabalin often causes daytime sleepiness/drowsiness. The exception is when the maximum dose (of 300 mg or so) is reached for the evening dose and RLS symptoms persist in the morning, then additional lower morning doses may be added.

Therefore, my general suggestion for your type of situation would be to slowly increase the evening dose to at least 300 mg. If that is well tolerated and symptoms persist, going up to 450 mg may be reasonable (as long as side effects are not limiting this increased dose).

The other concern is to rule out other factors that may worsen RLS. This includes low iron levels (get a serum ferritin and iron saturation levels), new drugs that worsen RLS (we have a long list on our website), stress, decreased sleep, etc. Often one or more of these issues can be addressed and improve the RLS treatment.

Sent: Thursday, May 30, 2019 6:07 AM
Subject: Your Advice Urgently Needed

I have had refractory RLS my whole life and I was successfully treated with methadone 10 mg for years but with the opioid crisis I have had that taken away.

My current sleep specialist originally was open to my getting back to methadone but wanted to do a sleep study first. It was found I have mild sleep apnea (normal 5, me at 8). My doctor wants me to use a CPAP, however, I am having trouble due to feeling claustrophobic and feeling like I’m suffocating.

I am currently taking Requip XL 4 mg and immediate release Requip 3 mg, which I am aware is very inappropriate. I have, as you can imagine, developed severe augmentation, so we are attempting to taper on clonidine 0.1 mg twice a day and tramadol 50 mg once at bedtime only. However, I’m not tolerating the clonidine and the tramadol is not helping.

This is as far as I’ve gotten in three months. My questions to you are: Would it be safe to take methadone with very mild sleep apnea?
Would it be appropriate and safe to take a higher dose of methadone temporarily to taper off of the Requip? If it would be helpful, I could provide a current list of medications. I do take alprazolam but as it too is a respiratory depressant am weaning off.

I am struggling right now and appreciate any advice you can give me.

Susan K.

A Medical Reply

You are correct about the improper therapy when trying to transition you off methadone and back onto dopamine agonists (Requip, even long acting) which will predictably reproduce severe augmentation. Tramadol adds only a little help in this situation and clonidine adds nothing (and of course, caused side effects without any possibility of helping you).

Methadone typically does not worsen obstructive sleep apnea (and with 8 apneas per hour, you have trivial sleep apnea which generally would not be treated by CPAP therapy). It may sometimes cause/worsen central sleep apnea but that would only need to be investigated by another sleep study (but only if you develop increased daytime sleepiness).

Your previous methadone at 10 mg is a very reasonable dose and unless I had a compelling reason (like troublesome side effects), I would have recommended that you stay on that therapy. If you do transition off your current medication, you will likely need a higher than previous dose of methadone for about 1-3 weeks (until the augmentation process calms down) at which point it is expected that you should be back on your previous methadone 10 mg.

Sent: Sunday, May 5, 2019 5:55 PM
Subject: Help for severe RLS

I am at my wits end. My RLS and PLMD have made my life miserable. I get very little sleep at night and fall asleep with almost no notice during the day.

I am a 76 year old male who has suffered with these ailments for about 30 years and I began treatment with dopamine agonists in 2004, eventually reaching over 2 mg. per day of pramipexole. I was experiencing augmentation and have since reduced this drug to between .375 and .75 mg. but my suffering with the RLS has increased dramatically. I am currently with Kaiser Permanente in Washington State and my doctor started out with 5 mg.

of oxycodone and has recently increased it to 10 mg. but even though it works wonderfully while it lasts, it doesn’t provide enough all day relief to prevent further daily occurrences of RLS. When I asked my current doctor about using methadone, he said I would have to get it from a clinic. I sense some reluctance on his part to increasing the dosage of opioids or using anything but oxycodone.

I’m very frustrated as is my wife because her sleep is greatly compromised at night because of my thrashing around. Can you please help me?

Paul B.

A Medical Reply

The low doses of oxycodone might be effective but only once you get off the pramipexole. As long as you stay on the pramipexole, it is likely that your RLS will get worse with time and you will need even more opioids.

However, as you already know, decreasing pramipexole and getting off them is very difficult and you will need more opioids during that time but ultimately, you will need less in the long run (often after a few weeks).

Methadone does work better but often oxycodone will do the job. You can also the longer acting form of oxycodone, OxyContin.

A Reply from Paul

Sent: Monday, June 3, 2019 5:10 PM
Subject: Methadone vs. MS Contin

Thirty days ago today I stopped pramipexole for RLS after having been on it for 14 years and increasing the dosage over time up to over 2 mg. and during the last 30 days my doctor prescribed for me oxycodone 5mg. 3 times per day, early afternoon, 7:30 PM and 2 AM. It got me through the rough withdrawal period and worked very well, except I woke up in the early morning hours because the previous dose of oxycodone had worn off. I went back to see him hoping to have him prescribe for me two 5mg. a day doses of methadone for the nighttime so I would sleep through the night and eliminate the two 5 mg.

oxycodone doses and keeping the afternoon dose. This would then have eliminated waking up at 2AM just to take a pill.

He explained to me that his current medical license didn’t allow him to prescribe methadone and that it required a further training regimen, so he offered to write a script for 15 mg. of MS Contin instead. I’m worried that the 15 mg. MS Contin coupled with the 5mg. of oxycodone in the early afternoon draws me closer to the critical precipice of to many opioids in a short period and could result in personal tolerance or addiction, not to mention that methadone even at a reduced dose would provide a better alternative to MS Contin for so many reasons. Am I right to be worried about this?

I am a 76 year old male.

Paul B.

A Medical Reply

First of all, any medical license that permits the prescribing of oxycodone, MS Contin etc. would permit the prescribing of methadone since they are all Schedule II drugs. There are no special or additional rules or requirements to prescribe methadone.

However, it is possible that a combination of MS Contin and oxycodone might work as well as lower doses of methadone but using 2 drugs does make it considerably more complicated and difficult to figure out problems if side effects or other issues occur.

Sent: Wednesday, June 26, 2019 8:33 AM
Subject: Re: Struggling with RLS

Will taking Mucuna Pruriens make it any harder to get off the Pramipexole? Is Mucuna Pruriens same as all the other drugs that leave us with augmentation? I have read extensively about Mucuna Pruriens and the fact that L-Dopa meds are created using Mucuna itself, which happens to raise the dopamine levels.

Since its almost equal to a natural supplement, I was wondering if it would be a good idea to take Mucuna whilst weaning off of Pramipexole ? Also, do you think there would be an element of augmentation if Mucuna is taken in the long term.

Pranjal S.

A Medical Reply

Mucuna Pruriens is an over the counter herbal preparation that has been promoted for treating many different medical conditions. However, there is no good medical/scientific proof that Mucuna Pruriens can treat any medical disorder including RLS. Since it has not been properly studied, we cannot say that it is safe or effective for any medical condition.

I would recommend that it should not be taken and have no idea if it has any effect (good or bad) on RLS or RLS augmentation. There is no credible evidence that Mucuna Pruriens has any effect on dopamine.

Sent: Sunday, June 23, 2019 8:12 PM
Subject: Need advice

I am a 60 year old female. I had a sleep study done in March 2018 due to choking episodes I had been having within the first 2 hours of sleep. These episodes occur about 2-3x per week. I have always been very healthy, athletic, on no medications and at a healthy weight. I have always loved to sleep and slept great except for having the choking episodes soon after I fall asleep. I am able to get right back to sleep after the episode, but they are frightening. I had never complained of any issues with my legs. My husband says he has never noticed my legs moving in the night.

My sleep study showed my AHI was 5.4 per hour. Snoring was noted. My PLM index was 46 per hour with an arousal index of 7 per hour. I was started on a CPAP in July 2018. I felt like I was sleeping well and no longer snoring with the CPAP, but still having the choking episodes within the first 2 hours of sleep.

At the end of July my sleep medicine doctor started me on Mirapex at .25 per night. He had said my choking episodes were related to my PLMD. I was not keen about taking it since I had read your articles about augmentation. He also prescribed 100 mg of Gabapentin - up to 3 per night. I started taking the Gabapentin initially, due to my hesitancy about taking the Mirapex. In August I began taking the .25 Mirapex. I immediately began having tingling in my feet, then my legs, hands and arms. Could the Mirapex have caused this? I took it for 8 nights at .25 mg/night as prescribed. I stopped taking it when I realized that the Mirapex is likely what caused the tingling symptoms. I am still having the daily tingling 11 months later, often worse in the evenings. I had never had any of these symptoms before I took Mirapex. Could it be related? I only took 8 tablets of .25 mg Mirapex. I have not taken any since.

I am not sure what to do. I continue having the choking arousals and now with jerking of my legs and arms in the first 2 hours of sleep. My sleep medicine doctor started me on Klonopin for the PLM’s. I’m taking .25 mg per night. I’m still having the tingling which started July/August 2018. I need another opinion. My sleep medicine doctor told me to go back on .25 Mirapex and take up 4 per night to help with the choking and jerking in sleep. After reading this website I have decided not to take the Mirapex and especially not at such a high dosage. I don’t think I have RLS based on the criteria for diagnosis. I’m fearful of what this tingling might be. I’d appreciate any advice you can give me. Could the 8 Mirapex tablets I took last summer have caused this tingling which persists daily?

Lisa I.

A Medical Reply

It would be very unusual for 8 days of taking one Mirapex .25 mg should cause your problem with tingling in your extremities. To trigger RLS (which you don’t seem to have based on your review of RLS symptoms) would generally require weeks, months or more often years to occur. I have never heard of your particular problem (especially if there is no associated urge to move the affected limbs) occurring with the use of Mirapex (either short term of very long term) and I have used a lot of Mirapex (especially in the past).

My general advice is that PLM should not be treated and especially not with Mirapex. It is quite unlikely that the PLM (and yours is fairly mild as we give more weight to the PLM with arousals) would be responsible for your choking episodes. There are likely other explanation for your choking episodes (for example, post nasal drip causing some spasm of your vocal cords or one of your few apnea episodes are just a couple of many other possibilities). Furthermore, the maximum recommended FDA approved dose of Mirapex is .5 mg per day (and my suggested maximum is .25 mg) so 4 of these tablets would be an excessive dose.

I also recommend (in my several books and articles) against the use of Klonopin for treating RLS or PLM. This drug has over a 40 hour half-life and tends to cause next day sedation (and can be very addictive). As noted above, I rarely recommend any treatment for PLM but if I feel treatment is necessary, I would use gabapentin (or Lyrica which is better absorbed).

A Reply from Lisa

Sent: Monday, June 24, 2019 8:48 PM
Subject: Re: Need advice

I do have one more question. Is my PLM arousal index of 7 fairly low? Is it not something I should be concerned about?

Lisa I.

A Medical Reply

Our thoughts on PLM have changed over the past decade. Even when they were considered possibly more troublesome, the severity was rated as such:

Mild: 5-25/hour
Moderate: 25-50/hour
Severe: greater than 50/hour

This classification does not exist any longer as the clinical significance of PLM is not well understood and there does not seem to be a correlation between more PLM and next day symptoms. Despite all this, your PLM arousal rate of 7/hour is very mild and I personally would rarely if ever treat it based upon your symptoms.

Sent: Monday, June 24, 2019 1:20 PM
Subject: Restless Legs

I am 28 years old. I have struggled with Restless Leg Syndrome for around 14 years. I was in a car accident in 2008 crushing my right leg and after that the restless legs was nonstop so I began treatment. Being prescribed Mirapex. After a few years on that it stopped working so I just gave up on all medications until the year of 2016. I then started back on Mirapex only to find no relief.

Then my doctor prescribed me Gabapentin only to find myself extremely dizzy and tried the following day so then we moved to Requip, starting at 0.5 mg. It is now 2019 and over the years my dosage has moved up to 3mg, working for around 4 months and now it’s back to full symptoms are back plus some.

I also have been physically sick, vomiting when taking the 3mg. I called my doctor he then referred me to the Neurologist, until the appointment he told me there’s nothing that can be done. I stopped all Requip for two weeks and then picked back up with 1mg so see if I could find relief, with no luck. Still waiting on neurologist appointment.

Any advice? Is there anything left to try? I haven’t slept in weeks, my legs are constantly going, I’ve tried everything recommended that I can do.

HHC

A Medical Reply

The problem that you are experiencing is unfortunately very common and called RLS augmentation. This is a worsening of RLS due to taking dopamine drugs like Mirapex and Requip. These drugs often work very well initially then worsen the RLS requiring higher and higher doses that eventually will also not help. Most doctors are not familiar with augmentation and do not know how to prevent it or treat it.

Since you cannot take gabapentin due to dizziness (very common side effect), the major choice now would be to transition to a low dose of an opioid. Once you are completely off the Requip (which is known to cause nausea), your RLS will be much easier to control (but that could take 1-4 weeks). The opioids make this transition much easier but you may need to stay on a low dose of an opioid indefinitely to control your RLS symptoms. Most patients do very well with this treatment.

Sent: Friday, July 5, 2019 12:34 PM
Subject: Help with medication for Restless Legs Syndrome

I am a 75 year old female living in the U.K. I have had restless legs for about 25 years. I have recently augmented on Ropinirole after using it for over 10 years, together with Tramadol. For the past four months I have been taking Pregabalin, gradually increasing the dose to 300mg, which is still not controlling my symptoms. I take 100mg Tramadol, 50mg at 5.00pm and 50mg with the Pregabalin before bed.

I have requested OxyContin from my GP here, instead of Tramadol, but she will not allow this as she thinks this should be prescribed by a Consultant in pain management. I sleep very little most nights and the doctor has given me some Zopiclone
sleeping tablets to take intermittently to help with this. Also she has prescribed 20mg Prozac (Fluoxetine) to help me feel better.

My questions are:
1. Regarding the Prozac, am I correct in thinking this is contraindicated whilst taking Pregabalin, and that Trazodone would be a good alternative.
2. Would OxyContin be a good alternative to Tramadol and work with the Pregabalin to relieve my symptoms.

Gloria DS

A Medical Reply

The issue with the Prozac has nothing to do with an interaction with pregabalin (there is no interaction) but rather that Prozac tends to make RLS worse. Trazodone is not a great antidepressant but does not worsen RLS.

OxyContin is a better choice than tramadol when tramadol is not effective. Oxycodone is a better option since you may only need 5 mg while the lowest dose of the slow release Oxycodone is 10 mg. However, most doctors do not like prescribing opioids and this seems to be worse in the UK.

Sent: Tuesday, July 9, 2019 7:08 AM
Subject: Help/Advice Needed on next treatment steps.

I've been taking Pregabalin 300mg in total built up to this does over last 2 years. I still can't sleep through at night and now been to a neurologist who wants me to go back to Ropinirole ( I started with bad RLS 4 years ago and this was my first drug I took 0.5mg building up to 1mg but symptoms got worse early morning again moving to my arm) and work on a rotation basis around the drugs available as she said they stop working for RLS after a period of time so need to change on a regular basis, every year or so.
 

Could I ask your thoughts on this please as I’m concerned about coming off the Pregabalin going onto Ropinirole again and then maybe another drug as it was difficult coming off the Ropinirole the first time and I’m not sure how I’ll manage coming of the Pregabalin?

Thank you any advice would be great, my Neurologist is sending a treatment plan including the rotation situation to my GP and doesn’t need to see me again.

Val J.

A Medical Reply

I typically caution against the use of ropinirole (or its cousin drug, pramipexole) since these drugs do help RLS initially but then make the RLS much worse (called augmentation as you have already noted).

My recommendation would be to add a low dose of an opioid (like methadone or oxycodone) in addition to the pregabalin) and you should do well with that therapy. If you can’t get any local physician to prescribe an opioid, an alternative would be to add (not replace) the Neupro patch to the pregabalin. Although the Neupro patch is also a dopamine agonist, augmentation occurs much less frequently (especially if the dose is kept low and does not exceed 3 mg).

Sent: Thursday, July 18, 2019 2:53 PM
Subject: Desperate for help with RLS

I am a 59 year old female who has been suffering with RLS for 2.5 years with resulting insomnia. I have tried many different medications including;

Requip 1mg -I augmented after 6 months and had to wean off
Gabapentin 600 mg at bedtime
Lunesta and Ambien-Both of which made the RLS much worse
Analgesics such as Tylenol with Codeine, Vicodin, Tramadol and Ibuprofen-None of which relieved the RLS
Various natural herbs and supplements and I am presently supplementing with Ferrous Biglycinate Chelate 36 mg-3 capsules daily, due to a Ferritin level of 53 two months ago.

Out of desperation I even flew to Fort Collins, CO to see a podiatrist, who performed bilateral Lower extremity nerve decompression surgery in April of 2018. I was told that there was a 90% chance that this would help the RLS. It did not make any difference.

The only thing I have found that has helped and allows me to get some sleep, as well as travel any distances by car or plane, is Kratom. This is a powder from a tropical evergreen tree in Southeast Asia. The powder is mixed with water and taken orally, and within 1 hour my legs calm down and I can relax. Unfortunately the relief only lasts 3 hours which means I am up several time in the night to take more. I have been using Kratom for the last year and a half (after I weaned off of Requip), but have noticed over the last year increasing anxiety and depression upon awakening in the morning.

This has made it extremely difficult for me to function, and combined with my lack of sleep, I feel miserable most days. I would like to find something to get off the Kratom, but need to find something to replace it that will be as effective. My doctor has tried various SSRI and SNRI antidepressants and Benzodiazepine sedatives to try to help relieve the depression and anxiety with minimal relief.

Would you be able to suggest any other medications to use instead of the Kratom? I am feeling very desperate for help. I saw a Pulmonologist yesterday who didn’t have any other suggestion other than to see a Neurologist. I have an appointment with one but can’t get in to see her for 4 months.

Cindy P.

A Medical Reply

There was no chance that the nerve surgery would have helped your RLS. There is absolutely no valid evidence to support that therapy.

There are several possible options for treating your RLS. Once you have augmented on a dopamine agonist drug like Requip, your RLS becomes more difficult to treat. Lyrica or Horizant may work better than gabapentin but may not be able to relieve your current RLS symptoms by themselves

Kratom is simply an opioid that is more potent than the ones that you have already tried. You may need a more potent opioid like methadone or oxycodone (slow release to last longer) in order to treat your RLS.

You will likely find that most neurologists do not know that much about treating severe RLS and will be reluctant to prescribe potent opioids.

A Reply from Cindy

Sent: Saturday, August 3, 2019 11:54 AM
Subject: Methadone

Thank you for responding to my email of 7/18/19. I gave a copy of the email and your article about the use of Opioids for RLS to my doctor who greatly appreciates your expertise and who is considering using them in my treatment. Since I am also having a terrible time with insomnia, I wondered if the Methadone would have a negative effect on my sleep?

Do other patients use anything else in conjunction with the Methadone or would Oxycodone be a better choice for sleep?

Cindy P.

A Medical Reply

The more common side effect of opioids is sedation/sleepiness which in a small percentage of patients may hang over the next day (in which case we change to a shorter acting opioid). Insomnia can occur with opioids but is a less common side effect than sleepiness.

Sometimes the sleep related side effects (insomnia or increased
sleepiness)
may occur some opioids but not others. There is usually no rhyme or reason as to which one does which but this is more dependent upon the patient's reactions to the drugs.

There is a warning about using sedatives (like Xanax) with opioids, but with low doses of each, there is usually no problems. Ambien or Lunesta may be preferred when adding a sleeping pill to an opioid.

Sent: Friday, August 9, 2019 10:56 AM
Subject: RLS Help

I am not yet a patient of yours, but I am in need of advice about Mirapex/Mirapex ER. A little background: I am 75 yrs old...my RLS was diagnosed (rather “confirmed”) at the Stanford University Sleep Center 20 years ago.

Mirapex has been my RX since then...generic pramipexole doesn’t work as well for me.

Boehringer Ingelheim is no longer producing Mirapex...only Mirapex ER. I spoke to a nurse at the company, who assured me that the ER is only for Parkinson’s. She deferred me to my primary care physician for advice. My Internal Medicine doctor (Bozeman, Montana) has limited knowledge about RLS.

I met a patient of yours at an RLS meeting in Portland, OR last spring. He highly recommended you—actually said that you are his only salvation! On that note, I bought two of your books: Clinical Management f RLS, and Restless Leg Syndrome.

My intention is to see you and become a patient this year. I am embarrassed and apologize for taking your time, but I am rather desperate. (I have looked up the structural formula for both Mirapex and the ER version. I’m a retired Elementary teacher, not a chemist, but the two formulas look exactly the same to me!)

Karen H.
Bozeman, MT

A Medical Reply

There is no chemical difference between the immediate release Mirapex and the Mirapex ER. However, the Mirapex ER has been formulated to be slow release (which is due to the structure of the tablet which has a matrix that enables the slow release of the Mirapex). I actually do prescribe Mirapex ER occasionally for RLS. The issue with prescribing it for RLS (the nurse at the company likely did not explain this well enough to you) is that the Mirapex ER has only been FDA approved for treating Parkinson's Disease.

Therefore, many insurance companies may not approve (and therefore cover and pay for the drug) the use of Mirapex ER for RLS. I sometimes get away with prescribing and getting my patients covered but quite often, it becomes too expensive due to the lack of coverage. This is actually a common problem with many other drugs that I use to treat my RLS patients but often can't get covered and thus affordable.

However, in general, I do not like prescribing or keeping patients on dopamine agonist drugs like Mirapex due to the very high percentage of RLS augmentation.

Sent: Friday, July 26, 2019 2:23 PM
Subject: Help with Pramipexole withdrawal please

I have two questions which I hope you can help me with.
1) Can Gabapentin relieve my RLS symptoms even though I am taking Pramipexole, at the same time?
2) At what point in withdrawing from Pramipexole are withdrawal symptoms going to be at their worst?

Background:

From 2009 to 2018 I was taking 540 mcg Pramipexole and suffered augmentation.
In August 2018 I started Gabapentin and also had a two month course of Naproxen. This was for nerve pain caused by a compressed nerve in my spine. I have been taking Gabapentin ever since.
In October 2018 I started very slowly reducing my Pramipexole.
Between October 2018 and January 2019, I was sleeping about 2 – 3 hours a night.

Currently:
I am now sleeping 6 – 9 hours a night.
I am currently taking 600mg Gabapentin, 300mg in the morning and 300mg at night. ( I still have some nerve pain).
Any RLS symptoms I now experience are less than the symptoms I experienced when I was still taking 540 mcg
I have been taking 44mcg for the last week after reducing from 88mcg for the previous 4 weeks.
In 3 weeks time I intend to stop taking Pramipexole altogether. I have been told by many people that Gabapentin will not work for my RLS until my system is entirely free of Pramipexole. So I am wondering if I will start suffering withdrawal symptoms when I stop the Pramipexole.

Tim S.
United Kingdom

A Medical Reply

We often use combination therapy which can include gabapentin and a dopamine drug like pramipexole. The gabapentin should add significant RLS relief when the pramipexole does not fully control them. The concern about pramipexole is that it causes augmentation and getting off it is the best solution. Gabapentin may not always be sufficient to control RLS symptoms when stopping pramipexole.

A day after stopping a dopamine drug like pramipexole, RLS symptoms will dramatically worsen. This tends to last about 10-12 days until RLS symptoms calm down. However relief can occur in 1 -4 weeks (or even much longer in some cases). The only drug that almost guarantees and easy withdrawal from pramipexole without much if any RLS symptoms are the potent opioids.

Sent: Saturday, August 17, 2019 5:26 AM
Subject: RLS and tiredness

I suffer from severe (daily) refractory RLS. After treatment failure with ropinirole (including augmentation), tramadol, and gabapentin, my RLS symptoms are rather well controlled by oxycodone slow release. Initially by just one 5 mg dose in the evening, which I had to increase after 6 months to twice 5 mg, taken 1 hour apart. Taken in this way, I find the effectiveness lasts the required time and I avoid “withdrawal” effects in the morning. When initially on 5 mg normal oxycodone, I suffered from dizziness and headaches in the morning. The SR version dealt with that.

May I pick your brain regarding your experiences with side effects of RLS and/or oxycodone?

Even though I have slept rather well since about January this year, I find I am still tired all day. Not sleepy, but tired. My energy runs out very quickly and it is hard to remain focused, e.g. do concentrated reading, for more than about 20 min. To give you an idea, at the age of 57 I find I have almost less energy than my parents who are well into their 80s. I have lost my job and my life has become very ‘small’ due to this tiredness.

I see several potential ‘reasons’ for this continued tiredness:
• it is a side-effect of the oxycodone
• it is a kind of ‘withdrawal’ from the oxycodone, because I only take it in the evening (7PM and 8PM) – but see below
• it is part of the RLS, because the symptoms are not cured, but only suppressed by the oxycodone
• it is tiredness still remaining after 15+ years of bad sleep due to unrecognized RLS and a stressful life resulting from the bad sleep

I should let you know that I experimented by taking an extra 5 mg oxycodone in the morning during a week. It helped a little bit, allowing me to lay down in the afternoon to get some rest or sleep. Normally that proves impossible, especially if I have done too much, because the legs will start.

Do you recognize this ‘complaint’ from other people with RLS whose symptoms are controlled by effective medication?
What do you think are the most likely reasons?
And what could I do to lessen the tiredness? I do try not to overstep my boundaries, but that proves to be a challenge as the ‘costs’ only arrive about a day later.

I wonder about the option of switching to another opioid. My neurologist (I am in The Netherlands) may be willing to prescribe methadone. Does the methadone work differently from the oxycodone? Or may there be other reasons that it may be worth a try to see if methadone does not have this side effect of continued tiredness with me?

Charlotte D.
The Netherlands

A Medical Reply

Your dose of oxycodone is still quite low so it is much less likely that your fatigue should not be due to withdrawal of the drug in the am (furthermore, taking an additional dose did not really help very much). The most common reason for increased fatigue (but with increased sleepiness) from an opioid would be sleep apnea. However, you then should have increased sleepiness.

I have seen patients complain of fatigue with opioids (without sleep apnea) and these typically occur with the longer acting opioids like your SR (Slow Release) version of oxycodone. A quick way to see if this is correct would be to change to the immediate release (“regular”) oxycodone and see if this problem goes away. If that is the case, then switching permanently to a shorter acting opioid should resolve your problem.

I am not sure what was causing your problems of morning headaches and dizziness with the short acting oxycodone. That is somewhat of an unusual problem especially as it improved with the SR version of oxycodone. If the morning problems occur again with immediate release oxycodone, you may consider trying another short acting opioid like hydromorphone. Methadone works very well for RLS but is longer acting (closer to oxycodone SR) so may also cause next day fatigue.

Sent: Sunday, August 18, 2019 3:55 AM
Subject: opiate restrictions

I have very severe RLS in my legs, arms, and the left side of my face. I am 67 yrs. old. The RLS would go from about 5:00 on the evening till around 4 or 5 the next morning. It has been a non- issue for me the past 22 years because I was on first Ultram and then methadone.

Pennsylvania is going to enact some strict laws about opiate use so I will be faced once again with the torture this condition brings. I had already tried every other med listed but none of them work. What can you suggest I could use that will maybe bring me some level of relief?

I can't believe that I will once again go from having a normal life to no quality of life. Before this RLS was controlled, I was to the point of having a breakdown. I'm very afraid of what lies ahead.

Mary P.

A Medical Reply

Although the Pennsylvania opioid laws are getting much stricter, this mostly applies to acute pain (like after surgery) which will be limited to one week. However, there is an exception for treating chronic pain (like the chronic RLS pain). Certainly many doctors may become more fearful and refuse to prescribe chronic opioids but there should be enough specialists left in Pennsylvania who will be able/comfortable enough to prescribe opioids for chronic pain/RLS in the typically low doses that are used for RLS patients.

Sent: Sunday, August 18, 2019 11:55 PM
Subject: Restless Legs

My problem with restless legs have been going on for years and is beyond being moderate until I just couldn’t sleep anymore and was prescribed many different drugs but they didn’t help. Finally I was prescribed OxyContin and it worked immediately, I finally got relief and a life.

The problem was I was over prescribed and found out when I tried to wean down on the drug. I went from 60 mg a day to 25 mg and it wasn’t easy, actually brutal but I’m okay now and the restless legs didn’t come back except for two times and I just added 5 more mg and I got relief and went back to the 25 mg dose with no problem.

My question is, if I went on methadone could I then quit OxyContin totally without a problem with the methadone?

Charlie S.

A Medical Reply

You could change from OxyContin to methadone and there should not be a big problem except for the few days or so that it takes to figure out the dose that takes care of your RLS as well as the OxyContin. However, since you are doing well with the OxyContin, why go through the switch to another opioid?

Sent: Sunday, August 25, 2019 4:22 PM
Subject: eating disorder caused by Requip and what can be done

Hello,
I’ve been on meds., for restless leg for many years. The last couple of years I was diagnosed with an eating disorder caused by Requip. I’ve gained a great deal of weight which is causing other health issues. I’ve tried hypnotherapy which didn’t last and is expensive.

My doctor now wants me to take Phentermine. To me this doesn’t solve the issue because as soon as you go off the drug you are still left with Requip and the eating disorder. What are people doing? HELP.

Vicki H.

A Medical Reply

Requip and other dopamine agonist drugs are known to cause compulsive behaviors that are very difficult to control (including compulsive eating). As long as you stay on the Requip, you will continue to have great difficulty controlling your eating disorder. Furthermore, drugs like Requip cause worsening of RLS symptoms (called RLS augmentation) with time. For these reasons, the best recommendation would be to get off the Requip.

However, getting off Requip can be very difficult without proper treatment which most doctors do not know about. Most often it takes opioids to get off Requip which most doctors are very reluctant to prescribe. The opioids can be very safe for RLS as they are usually prescribed at very low dose. Attached is an article published by us experts on the safety and effectiveness of opioids for treating RLS.

Sent: Saturday, September 21, 2019 6:59 PM
Subject: Lyrica is not working- nor is anything else!

I have come back for some more advice if you would be so kind. I wrote earlier in the year whilst augmenting on dopamine agonists and successfully weaned off those. I also weaned off my SSRI which was paroxetine in case it was aggravating my restless legs, as well as gabapentin and baclofen. My legs, although still bad, weren't half as bad as I thought they should have been, had those medications been of any use at all. I suspect a lot of my problem was augmentation.

I am now only on tramadol, 100 mg twice daily, and Lyrica, 300 mg. I thought trying Lyrica once off the others would have some chance of success and had a month of sleep and NO restless leg symptoms. Now I am having symptoms in the daytime, early evening and during the night am often up all night except for an hour or so.

I had a sleep study on Thursday and over the whole night, slept for an hour. The rest I was standing by the bed, wired to it in fact, and doing all sorts of contortions and gymnastics and repetitive exercise to try to alleviate the agony. In terms of severity, it wasn't as bad as I've experienced but bad enough that I couldn't lay down. When I was able to get back into bed, my legs buzzed so horribly that I couldn't sleep anyway. At least I was able to lie down. Small mercies! The technician was able to say that I still have severe sleep apnoea when sleeping on my back. However, it never bothers me. If my legs are good, then I will sleep like a baby all night. In my opinion it's my legs that cause me to be awake and not the sleep apnoea.

I am going crazy trying to find out if any foods are causing or exacerbating my RLS and have difficulty assessing what may or may not as I never have a symptom free day/night to test. I suspect glutamate is a culprit eating foods high in glutamate but it could be sheer coincidence. I'm also on the FODMAP diet and have had some improvement in rates of absorption of iron when I was taking it. I am aware that IF food is an issue, when medicated properly and successfully which has happened for the short periods when Lyrica worked or on DAs until I augment, I don't suffer from symptoms or am aware of it causing or exacerbating RLS.

In desperation, I've used a 2mg Neupro patch twice a week to ensure I get some sleep and when using it, I can sleep for 12 hours! I hesitate to use it though as I augmented on it within two weeks when using it constantly. However, currently it is allowing me some relief.

I have tried pretty much everything that is suggested for RLS in terms of medications bar methadone and cannabinoids as they would be difficult to source though my Sleep Physician seems inclined to fight for it for me if I prove to need it/them. My neurologist is currently not seeing patients till January and I don't have any faith in his ability to treat my RLS anyway. He didn't even recognize or know about augmentation when I was clearly suffering from it for about 2 years. My GP is very helpful now and willing to read what I take in and try to prescribe what he's able. We're running out of options though.

I know you helped me before and gave what advise you could. I wonder if you have any more thoughts given what I've written. Should I increase Lyrica, stop it, decrease Tramadol, or try something else entirely. I do understand that without seeing me in person you are limited in what you can suggest but I would be grateful for any tips or suggestions.

Stephanie P.

A Medical Reply

There is not an easy answer except that opioids such as methadone or oxycodone would have an excellent chance of resolving your RLS symptoms.

Your tramadol also has the potential of causing augmentation so that might also an issue.

You are correct that the Neupro will bring you relief at the expense of developing augmentation. Lyrica is similar to gabapentin and might help but the most effective therapy would be low dose opioids.

Sent: Thursday, October 17, 2019 7:51 AM
Subject: Long-term Methadone effects?

I am a 75-year old woman living in Africa where RLS experts are few or absent. I have familial RLS, and the more disturbing symptoms started manifesting in my teenage years. I also have late-diagnosed ADD of the inattentive sort. I avoided medication until it was no longer possible to do so, and was put on pramipexole some 12 (?) years ago.

I augmented rapidly and suffered both disabling chronic insomnia and destructive compulsive shopping throughout my ‘Pramipexole Period’.
After informing myself of the perils of the drug I reduced my dose to 0.25mg, and was given methadone syrup as a backup for very frequent breakthroughs. Following a terrifying daytime RLS attack in all my limbs, on a busy afternoon, I switched over entirely to methadone from sheer panic. I took 15mg on the first day, then 10mg per day for a week or two, then titrated down to my present dose of 6mg. I cannot go lower than that - I have tried.

I have now taken methadone for one year precisely. (Previous to that I was given IV iron infusions after a ferritin test of 20). I am now able to sleep reasonably well, sometimes very well, for the first time in decades, and I am symptom-free. However, I now suffer almost-daily extreme fatigue and depression. Could this be a result of the methadone?

I am very small, 159cm tall and weight 47kg, so it occurred to me that 6mg may not be such a small dose for a woman of my stature. (I need not add that I am of Northern European descent). I also take 1mg lorazepam in the evening. I have become aware that the combination of benzodiazepine and opioid is a dangerous one, and looking back I see that I am at my worst in terms of fatigue and depression in the mornings and that the fog lifts in the evening. I awaken most days to a feeling of utter hopelessness. (This was not true in the early weeks of methadone use).

The one class of RLS drugs that I have not taken are the anti-convulsant medications. My doctor felt that, as I am extremely sensitive to drugs of many sorts, these drugs would not be appropriate for me. I do not know if this is true, but as I have reacted very badly to drugs as different as statins and valsartan this could well be true.

Apart from high blood pressure, which I feel sure is the result of unrelenting stress, I am in no other way unwell. (I have recently attempted Wellbutrin for the depression, but the RLS returned immediately. I stopped after one week.) At present my ADD is un-medicated.
 
My GP and I blunder along together, there being no present alternative, and I would very much appreciate the input of an expert.

Bronwen

A Medical Reply

It is difficult to give you real advice and your case is complicated and may be somewhat beyond the scope of simple email advice.

However, I do have a few simple observations and suggestions. Methadone can cause depression but it usually does this early on and with the higher doses. It is less likely (but still possible) that the low dose of methadone 6 mg is the cause of your depression. It is possible that the lorazepam (which is a reasonably long acting mediation with a half-life of about 10 hours) might be contributing to both your fatigue (especially if it lifts as the day progresses) and depression.

The low dose of methadone and a benzodiazepine is not too risky although they might combine to cause sedation and depression during the daytime in a small percentage of very sensitive patients. It may be better to change to a shorter acting sleeping pill like zolpidem or zopiclone instead of the lorazepam. You could also change to a shorter acting opioid like oxycodone.

Using the anticonvulsant gabapentin might help your RLS (if you decrease the dose of your other drugs) but may also add to daytime sleepiness and depression.

Sent: Wednesday, October 9, 2019 5:06 PM
Subject: Medications

My restless leg syndrome started a few weeks ago. I recently started taking 2mg of Requip and 300mg of Gabapentin. The first day I tried just Gabapentin (pharmacy was out of Requip) and it did not work. Second day I took both medications and got immediate relief. Should I continue both medications, or drop Gabapentin, or take some other combination? My symptoms before my medications were awful.

Jose M.

A Medical Reply

There are lots of issues with your treatment.

The starting dose of Requip is .25 mg (you are on almost 10 times that dose). This medication helps RLS initially but with time (months to many years), makes RLS markedly worse. Adding gabapentin is a good idea and increasing it so that you can decrease the Requip dose (to as low as possible) would be a very good idea.

I currently (and many other experts) do not like to start patients on short acting dopamine agonists like Requip. We start with drugs like gabapentin (and increase it to an effective dose) and may then add the long acting dopamine agonist drug, Neupro (which is more expensive since no generic is available but is a much safer drug than Requip).

Sent: Thursday, October 24, 2019 11:35 PM
Subject: My treatment for severe Restless Legs Syndrome.

I am 73 years old and I have had restless legs syndrome since I was about 10 years old. It became serious when I was about 55 years old.
Within a short period of time I was having symptoms 7 days a week and getting one or two hours sleep per night. I spent the rest of the night walking.

I couldn't keep up with my job because of the memory problem that went with the tiredness. I was finding it very hard to run a business and driving was dangerous. I had bad reactions to the couple of drugs I tried, Lyrica being one and I can't remember the other. I felt that there was a connection between the restless legs syndrome and digestion problems I had also experienced for a long time. I experimented with a gluten free diet and that was beneficial but not 100%

I expanded the diet to a FODMAP diet (for irritable bowel syndrome) and eliminated a few other foods and I now enjoy an excellent life.
Would you be interested in details. I have spread the idea through an online forum but not many people have taken it up. Among those who have I think there are about five who have advised me that it was successful. I think there might have been more but there was no reason for them to let me know. There are others who say they have tried it but with no success.

I think it would be almost impossible to arrange an adequate trial because you couldn't trust subjects to stick to the diet. I found it extremely sensitive for the first 6 months or so but after the years of strict adherence I can now depart from the diet for a few days without "punishment"
Monash University in Australia developed the FODMAP diet and they produce an app for a smart phone that is very detailed and updated frequently to include USA specific foods.

If you are interested I can give you more details. When I started the diet was very restrictive but there is a much wider range of foods included now. Of course the fact that these extra foods are acceptable for IBS patients doesn't prove that they will be acceptable to RLS patients. It may be that we have to restrict ourselves to some subset of the modern FODMAP diet.

I would happily nothing but rice bananas and steak if it keeps my RLS under control. It works for me and I can't believe that I am so lucky that I am the only one who can benefit from this. You are offering a marvelous pro bono advice service so I thought you might be able to spread the word if you think its feasible.

Graham R.
Australia

A Medical Reply

I have had several patients benefit from different diets. That includes avoiding gluten, refined carbohydrates and many other selective diets. Furthermore, there is some evidence that the intestines and their flora are involved in that treating SIBO is occasionally helpful. The problem is that for each diet, only a very few RLS patients seem to respond. It is therefore hard to recommend any one diet.

Hopefully, in the future, we will understand the relationship between diet, the bowels and RLS well enough to make recommendations that will apply to most RLS sufferers.

Sent: Saturday, October 26, 2019 5:52 AM
Subject: 80 days cold baths

I have suffered from Restless Leg Syndrome for 30 years and tried everything. I have tried all the dopamine agonists and had to come off them due to augmentation. At the moment all I take for relief is codeine phosphate. Throughout the night I wake every two hours from pain and leg movement and have to get up and walk around.

Recently a Hungarian recommended 80 days of cold water baths. Total submersion for 2 minutes every day. This is supposed to stimulate the hypothalamus to produce dopamine.

Can you tell me if this is a known help for those suffering with Restless leg syndrome.

Antonia H.

A Medical Reply

Not only is the cold water bath treatment not known, I have never heard of it before (and I have heard of almost everything that is credible or not credible for treating RLS).

I would not even consider trying it.

My suggestion would be to visit a Certified RLS Treatment Center (you can find them on the RLS Foundation's Website, www.rls.org ). Most patient can be successfully treated so that the RLS is controlled very well.

Sent: Saturday, October 26, 2019 5:27 PM
Subject: Advice

I am 57 years old and have suffered from RLS since I was in my teens although then it was quite mild and sporadic. My symptoms became worse during the last half of my first pregnancy but went back to normal after my son was born. They became worse again with the 2nd pregnancy and this time they did not return to how they were before. I had no idea the uncomfortable sensations that plagued me every evening and night were an actual condition. I had never spoken to anyone about them and could not really articulate how it felt.

When I was in my late 30s I was watching a documentary about a The sleep centre here in the UK, a patient was being treated for RLS and that was the first time I was aware other people had the same thing as me and that it had a name. I went straight to see my then GP and luckily she had seen the same documentary and had looked into the condition and she gave me Ropinirole which for me was a miracle pill. For 15 years I was almost symptom free, then 3 years ago I noticed it was not working any more and that my RLS was getting worse.

After researching on the internet I discovered EARLS and RLS-UK forum and I read about augmenting on drugs like Ropinirole. I had been intending to ask my GP to increase the dose from the 0.5 mg dose I had been taking but after reading about this I came straight off Ropinirole and began taking 100mg of Tramadol and 150mg of Lyrica. These two controlled 90% of the symptoms for the past 3 years but now these medications are not working anymore. I am not sure what to ask my current GP to prescribe, he does not know a great deal about RLS but so far has given me the meds I have asked to try although he was not too happy about prescribing Tramadol at first.

I have been thinking of going back on Ropinirole but it was exhausting coming off it last time but that may be because I just stopped taking it overnight. I have tried increasing the Tramadol to 150mg and Lyrica to 200mg but the Tramadol just makes me feel wide awake and unable to sleep and the increase of Lyrica makes me have an unpleasant jelly like feeling in my legs . People of the forum have suggested a Rotigotine patch and others Targinact I wondered what your thoughts are on where to go next in regards to medication, both short term and long? I am guessing I will be incredibly lucky to get another 15 years without symptoms.

So I guess I may need to keep swapping? Currently I am lucky if I get a total of 4 hours sleep a night and at least twice a week it is considerably less. I dread going to bed as I know what is to come. I often sleep on the sofa so not to disturb my husband and somehow pressing my feet against the inside of the arm of the sofa lessons the uncomfortable sensations in my legs. I would very much like to get back to 6+ hours sleep because at the moment I am not functioning properly and my head feels foggy. I am beginning to become desperate.

Mandy T.

A Medical Reply

The first advice would be not to go back on ropinirole (or its cousin drug, pramipexole) as the augmentation (worsening of RLS from a dopamine drug) you experienced is likely to come back very quickly.

It is quite possible that you are experiencing augmentation from tramadol (the only non-dopamine drug that causes augmentation). In that case a change to low dose oxycodone (5 – 10 mg) should work extremely well and last for decades or longer.

Targinact is simply a long acting (12 hours) form of oxycodone (with naloxone to prevent constipation) and the typically less expensive and lower dose plain oxycodone may work as well.

Sent: Monday, October 28, 2019 4:25 AM
Subject: RLS NIGHTMARE

I have suffered from childhood with RLS but have only needed medication in the last 20 years. It is now a nightly problem. I have tried all the medications mentioned on RLS sites but now feel like I have nowhere to turn and am always on a cocktail of drugs that either make me sick or leave me listless and exhausted all the time. I am retired but still want to live a good life. This latest mixture of drugs again leaves me exhausted and still I am up all night in pain.

My doctor does try to help but she is at a loss what to do next and asks me what I want to try next. Surely this is not right?
The medications I am on at the moment are:

Gabapentin 300 mg tablet. I have reduced down to this as it was not helping.
Clonazepam - 2 100 mg at night
Imipramine - 1 25 mg at night.

None of this works except for feeling listless and tired all the time. I am still up every night with pain. I do take hot baths, sometimes 3 a day/night. I use magnesium oil on my legs at night and organic body oil for sleep. My diet is good I think but when I have tried suggestions I do not t find a difference.

I was on Lyrica for years but the dosage got so high I felt completely out of it and could not function any longer. I have recently tried Pramipexole recently but they made me very nauseous, sore head and dizzy. I lived on toast for 2 weeks. I do find that if I take 2 co-codomol when the pain is bad this will help with pain and sleep. These are 30mg each tablet. Mostly I will get up and clean my house at night as it relieves the pain and I am too tired to do it during the day.

Please help with some advice. I am going to be a granny again and I would like to be of help to my daughter.

Pat M.

A Medical Reply

There are several issues with your treatment.

Imipramine worsens RLS rather than helping it.

Clonazepam is not an RLS drug. It is a sedative and just puts patients to sleep. However, if you do not get to sleep, it causes your RLS to be worse. Furthermore, the drug has over a 40 hour half-life which means it sticks around for a long time and worsens daytime sleepiness (and thus RLS).

The gabapentin is fine and is similar to Lyrica so higher doses may cause mental problems so I would not increase its dosage very much (if at all).

You have already noted the benefits of using an opioid like co-codomol and that is generally the advice you should discuss with your doctors. However, the doctors in the UK are typically very reluctant to prescribe opioids and especially for RLS. We usually prescribe more potent opioids like oxycodone (and opioids that do not contain other ingredients like acetaminophen as is the case with co-codomol).

To facilitate your ability to get opioids to treat your RLS, I am attaching our medical journal article published last year on the use of opioids to treat RLS.

Sent: Saturday, November 9, 2019 6:02 PM
Subject: Ketamine

"Does Ketamine infusion make RLS worse?"

This is the first mention of ketamine ever in the group, to my knowledge. There is a sentence in the Wikipedia article which states, "Ketamine has not been approved for use as an antidepressant, but its enantiomer, esketamine, has been."

Have you ever heard of this or do you know of a pertinent literature reference?

Charles H. B.

A Medical Reply

Ketamine is normally used as an anesthetic agent however recently it and its enantiomer, esketamine have been used for depression.

Ketamine does not worsen RLS and in fact there are 2 older articles that found that ketamine may help RLS.

Sent: Monday, November 18, 2019 2:05 AM
Subject: RLS question

I'm a 78 year-old female and have been on Requip for 15 years for RLS. I began experiencing augmentation with the Requip a couple years ago and, with the help of a neurologist, was able to cut down from 7mg/day to 3mg/day. I did this however by introducing low doses of Sinemet and Gabapentin into my daily regimen. It seems that while I do not have Parkinson’s, I do have Parkinsonian symptoms that this combination seems to address.

I write you because I recently had knee replacement surgery and have been taking tramadol for pain. In doing so, i find I don’t need as much Requip anymore. In fact I’ve gone down from 3mg to 2mg in only one week. My question to you is: once I taper off the tramadol, will I be able to stick to this lower dose of Requip, OR will I need to go back to the 3mg? I understand that opioids can help patients get off of RLS medication in a supervised setting, but I’m wondering if there’s any way to take advantage of the fact that I’m on tramadol now and use this opportunity to get off Requip entirely?

Sofia K.

A Medical Reply

The tramadol might help you get off the Requip although typically more potent opioids are necessary to accomplish that task. The other issue with augmentation is the use of daily Sinemet which causes augmentation even more readily (even at very low doses). We often do not see as much augmentation in patients with Parkinson's Disease who also suffer from RLS when taking dopamine related drugs.

However, even if you do get off Requip then try to stop the opioid (tramadol), it is most likely that the RLS will dramatically increase. Most patients needs to stay on the opioid indefinitely once it is used to get off dopamine drugs.

Sent: Wednesday, November 13, 2019 7:24 AM
Subject: RLS help/LDN

I found your support website yesterday after several hundred different searches for RLS help. My name is Erin, I'm 47 and have been fighting RLS most of my life. I started taking Mirapex/Pramipexole 18 years ago. My initial dose was .25 mg once daily. My most recent dose was 2.5 mg once daily. I have been asking for help and direction from doctors over the years trying to find alternatives to Pramipexole but have not had any luck. Most don't seem to understand the urgency of getting off of this drug at all.

Two weeks ago I started a low dose naltrexone protocol. I was told to work my way up to 10mg while decreasing the Pramipexole by .75 daily. I have been at the .5 dose now for 4 days and I have averaged an hour and a half of sleep almost every night since beginning the LDN protocol and only feel like the augmentation is getting worse.

I have tried Tramadol and Trazodone as an assist at night but those have only served to make me more miserable the next day and do nothing to soothe movement. At one point I could use Xanax to help with breakthrough symptoms but that isn't helping right now either.

Erin E.

A Medical Reply

It is quite predictable that your present treatment is not going to help you and cause extreme RLS misery. The LDN has no role in treating RLS (despite what you might read on the internet).

To transition off Mirapex (especially given your very high recent dose of this drug) would require a potent opioid like methadone or oxycodone. Most doctors are not aware of the issues with augmentation and the use of opioids to treat it. If done properly, there should be very little if any discomfort with this transition which should result in complete relief of your RLS symptoms. At this point, any other treatment will result in continued RLS suffering.

Sent: Tuesday, December 10, 2019 1:56 PM
Subject: Prescribing methadone

I have been on methadone for severe restless legs for many years. My dr. Is retiring & has no one that is taking over his practice. I will have to find a new dr. I am very worried about finding someone who will keep me on this med. I wonder how open a doctor would be to prescribing methadone. Have you any info about other doctors prescribing this.

Do you think methadone is becoming more acceptable as a treatment for this condition? It is the only med that works for me and I think I must have tried every other drug with no success. I'm really worried about how hard it will be to find someone.

Mary P.

A Medical Reply

Unfortunately, in this opioid epidemic climate, it has become even more difficult for doctors to prescribe opioids, including methadone. However, since you have been on a stable dose for many years, the new doctor may take that into consideration.

To help your case, you may want to take a copy of the article that we published last year on using opioids for RLS that should make many doctors feel a lot more comfortable prescribing methadone for RLS.

Sent: Friday, December 13, 2019 3:10 PM
Subject: Yesterday I had a seizure from gabapentin... I'm pretty sure.

I'm asking your advice because my sleep doc's office gave him the wrong phone # for us when we called for advice yesterday, so I only now got his multiple messages when we returned home & checked our landline. It's Friday evening and he won't be reachable until Monday.

I've got about 10 weeks to go on the 20-week transition my sleep doc decided to do between my 30-mg/day methadone dose and Belbuca. He prescribed gabapentin to keep my severe RLS jerks at bay and told me that by the time we're done I might well be taking 3600 mg of gabapentin per day (seems like a lot...).

Thus far, I've endured a big hive on my tongue (it gradually shrank), skin that shreds and bleeds very easily, and everything I eat having a horrid chemical taste. My current gabapentin dose is about 2400 mg/day. I have permission to increase it (as needed) every time the methadone dose decreases.

Yesterday, I was in the middle of a huge audience at a Christmas musical production when I began shivering. I buttoned my sweater and even put on my parka complete with hood, but kept "shivering." The skin on my back then felt electrified. Next, my entire body clenched tight, every muscle, while vibrating hard. I bit my tongue a little. My teeth jammed together so hard I worried that a tricky molar might break apart.

Then it went away for several seconds and I relaxed... but it happened again, dragging me sideways, curling me up in my seat, one arm out straight, while my whole body shook like someone was revving a chain saw inside me.

This process repeated for the entire first act, perhaps 20 minutes. My husband assumed I was cold. I felt foggy, but not unconscious. Very passive and bewildered.

Just before intermission, I excused myself and reached the Ladies' Room ahead of the crowd with no problems, though I felt weak, fatigued, bewildered, and unusually passive. The vibrations had stopped. My husband found me. Five minutes later I threw up everything I'd eaten that morning.

He called my sleep doc's office and left a message. We waited an hour but no one called back, so we returned to our hotel. I've felt fine since then (over 24 hours). If it happens again we'll call an ambulance (which is what the sleep doc advised in the messages we just now retrieved).

I'm wondering what other horrific gabapentin side effects might be waiting to pounce on me. My sleep doc wants me to get down to just 10 mg of methadone before withdrawing it altogether. That would mean ten more weeks of this!

My question: In the past 10 weeks I've inched down from 10 mg methadone am and 20 pm to only the evening dose. Could I suggest that he let me stop the methadone entirely IMMEDIATELY? He could give me something (what?) to keep withdrawal at bay; I could take gabapentin as needed for RLS, start Belbuca two (three?) days later, and then gradually reduce the gabapentin?

Sharon S.

A Medical Reply

We normally would transition from methadone at 10 mg to Belbuca by the next day. It is not clear what dose of Belbuca will match methadone 10 mg as this varies considerably from patient to patient.

Gabapentin will be very unlikely to take care of your RLS by itself. Doses of gabapentin higher than 600-900 mg are rarely absorbed so increasing the dose to very high levels is not recommended (even though many physicians continue to do this as they are not aware of this absorption limitation issue).

That is why Horizant was developed (it turns into gabapentin without any absorption issues). Another consideration would be Lyrica (generic pregabalin) that gets much better absorbed. However, this class of drug is not likely to replace an opioid by itself in your circumstanced.

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

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 120.
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