Sent: Saturday, December 05, 2015 8:05 AM
Subject: switching drugs
I'm a 54 year old women who lives in Washington State and suffers with what I classify as severe RLS. I found your name in the RLS Foundation's website. The reason for contacting you is I have been on ropinirole for approximately 9 years and my dosage has gone up considerably from 3 mg to 9 mg sometimes 12 mg depending on my discomfort. I have had no social life in the evening after 7 as my meds make me sleepy and ill if I don't go to bed by 8 or 9.
After finding the RLS foundation website I discovered that I was possibly augmenting and decided to get off of my ropinirole. My doctor has been great working with me to find a solution. This has been our game plan, I have been taking one 300 mg of gabapentin for 2 weeks along with 9 mg of ropinirole , increasing to 600 gm of gabapentin and decreasing to 6 mg of ropinirole. I'm currently at 900 mg of gabapentin and 1 1/2 mg or ropinirole.
The amount of gabapentin that I'm taking is one tablet over what she wanted me to take but my legs go crazy without it. I've been waking up at around 3 in the morning with my legs wanting to move but eventually I'll fall back to sleep or just get up. In 2 days I will not take anymore ropinirole , and taking 600 mg of gabapentin. I read that I need to be off all drugs for 10 days in order to reset my dopamine receptors. I was wanting your professional opinion on what I've been instructed to do and is there anything I should do different.
I've had RLS since childhood and its been life changing since diagnosis.
You are correct that augmentation will mostly reverse after about 10 days.
However, those 10-14 days (or more) may be very hard to get through just using
gabapentin. The gabapentin takes some of the edge of tapering ropinirole but
once down to a low dose (as you have already found) or especially when off the
ropinirole, gabapentin is typically not sufficient to take care of the marked
worsening of RLS symptoms. You may not be able to sleep at all during those
10-14 days. After the 10-14 days, your RLS might be controlled by gabapentin
alone but you may likely need opioids to help cover your RLS symptoms.
Increasing the dose of gabapentin above 600 mg (per dose) typically does not add
much as most patients can't absorb higher doses very well.
I typically perform the transition off ropinirole (or Mirapex) by using a potent opioid (typically methadone or oxycodone) which usually makes getting off ropinirole quite painless. It takes some expertise and experience to accomplish getting off dopamine agonists and unfortunately, most doctors do not have these skills.
For further information, check out this recent publication dealing with this topic that several of us experts have produced.
A Reply from Peggy
Sent: Monday, December 07, 2015 7:38 AM
Subject: Re: switching drugs
I read the article and have one more question. Is the recommendation 10 days off all RLS meds before staring just gabapentin ? And since I'm in recovery from addition, are there any alternatives to opioids ?
The 10 days off all RLS drugs is recommended by a few specialists but most of
us do not do that as it is extremely difficult for most patients. Gabapentin
should be no problem for that 10 day period.
Without opioids, you will have quite a bit of difficulty getting off ropinirole but we don't want to create other problems (especially if opioids were the drugs that you abused in the past).
Sent: Tuesday, December 08, 2015 11:01 AM
Subject: Requip and thyroid problems?
I'm wondering if you've found any correlation to the use of Requip and adverse effects on the thyroid? I was recently prescribed Requip, 1 mg at bedtime. It works wonders for my RLS! I recently finished Iron infusion therapy for IDA, which helped an exacerbation of RLS due to the iron deficiency. My concern is as follows: After taking the Requip for a few weeks, I began to feel a thickness in my throat, like a lump that wont swallow. Also mild shortness of breath, fluctuations in heart rate, agitation, extreme drowsiness (I yawn approx every 15-20 seconds. literally).
I was concerned that my thyroid was acting up as the throat issue feels very much like thyroid. I have Hypothyroidism. So, I went to the ER as it was driving me crazy with irritation and worry over the weekend. Labs were all excellent- no issues. I stopped taking the Requip because I didn't really need it.. RLS was fine, ALL of these symptoms faded after 4-5 days. Then the night before last I was struck with a round of RLS that was intolerable and relentless.
I took the Requip and woke up the next morning with all of the symptoms returned? Have you known of anyone who has experienced similar symptoms? Have you read anything that sounds similar?
Your symptoms do not sound like thyroid problems as some of the symptoms
occur with low thyroid while others occur with high thyroid levels (and besides,
if you had your thyroid tested, high or low thyroid problems would be picked up
immediately by blood tests). Furthermore, the only way thyroid problems cause a
sore throat is when you have a goiter (enlarged thyroid).
Requip can cause nasal stuffiness and drainage problems which might present as a throat problem (from the post nasal drip). Requip may also cause next day sedation. I canít explain the mild shortness of breath of heart rate issues.
It is likely that your iron infusion improved your RLS so that you donít need Requip. There are better reasons for not taking Requip which include the very common augmentation problems (worsening of RLS symptoms due to being on a dopamine drug like Requip) which occurs in the majority of RLS patients with time.
Sent: Saturday, December 26, 2015 9:28 AM
Subject: Ropinirole and Swallowing Issues
Iím a 53 year-old Caucasian male who has RLS. Iíve been taking 2mg of Ropinirole (2 1mg tablets) in the evening - one tablet at around 6:00 p.m. and the other tablet at bedtime (9:00- 10:00 p.m.). I have a family history of RLS; my father has a mild case and my uncle a moderate case. For the most part Ropinirole works well for me. I can sleep most nights, and the leg jerking (if present) generally lasts no more than 1-2 hours past bedtime, and sometimes I wake up in the morning with my leg jerking. My wife says I was bouncing off the bed last night (3:00 a.m.) and I slept right through it. I also tend to wake up around 3:00 a.m. and fall back to sleep around 4:00-5:00 a.m. So, perhaps I have a little insomnia. I addition, I get a little light headed when I make a trip to the bathroom at night. I tend to sit on the edge of the bed for 30 seconds before walking to the bathroom.
Lately, Iíve been diagnosed with a swallowing issue. Iíve had barium swallow followed by a video barium swallow with a speech pathologist. My epiglottis is not working properly. Food and liquid are moving past my epiglottis into the vestibule. The vestibule gets flushed with repeated swallowing. Flow of food in my esophagus is also slow. I cough often to dislodge the food and phlegm in my throat to re-swallow. I have not had pneumonia. Iíve had these symptoms for at least the past two years, maybe longer. Iím being scheduled next week for swallowing physical therapy, and will see the ENT doctor again in a couple of weeks. Iím otherwise in excellent health; Iím a very competitive road bike racer.
My primary question concerns the etiology of my swallowing malfunction. Could my swallowing issue be caused by Ropinirole? Are swallowing issues a side effect of Ropinirole? Also, since itís been ten years since Iíve done anything different regarding the treatment my RLS, should I see a RLS expert to adjust my meds? Iíve been very careful about taking Ropinirole consistently (taking one tablet at 6:00 p.m. greatly reduces my symptoms) for fear of augmentation, but Iím wondering if changes would reduce by symptoms.
A sleep study in 2005 showed severe Periodic Limb Movement disorder. Looking through my medical records I donít believe Iíve had a ferritin serum blood test.
Although we can never be 100% sure, it is quite unlikely that the ropinirole
has anything to do with your swallowing problem. That is not a usual side effect
of ropinirole and if it was related it should have occurred at the beginning of
starting the drug rather than many years after starting the drug.
Even though you have many PLM (Periodic Limb Movements) like most RLS patients, it is thought that the leg kicks really affect the bed partner rather than the patient.
There is a concern about augmentation but since you are not really having any such problems currently, it might be best to stay on your current dose of ropinirole until you start to experience augmentation symptoms. At that point, different treatment can be instituted.
Getting a serum ferritin level is helpful as if it is decreased (less than 50) then supplementing iron may help prevent worsening of the disease and may also prevent augmentation.
A Reply from Michael
Sent: Sunday, December 27, 2015 7:29 AM
Subject: Re: Ropinirole and Swallowing Issues
Itís informative to know that swallowing issues are not a common side effect of ropinirole. I donít really know if my swallowing issues have lasted 2+ years, 10+ years, or longer. I thought my swallowing issues were ďnormalĒ until my general practitioner noted concern when I said that I ďcough up food eaten an hour or two earlierĒ; I donít have a diverticulum, but barium studies indicate other esophageal abnormalities.
The PLM comment was something found in my medical records, so I thought it might be worth noting. Also, the next time I have a blood test, Iíll ask for a serum ferritin level.
Can you tell me a little more about augmentation. I see it mentioned a lot in the patient letters, and ropinirole seems susceptible to augmentation, but what is it and how does it manifest itself? If possible, how can it be prevented? Also, how is augmentation recognized; what are itís symptoms? Sadly, once augmentation happens, switching medication seems necessary.
Does RLS worsen with age?
Augmentation is a worsening of RLS caused by a dopamine drug that at first
helps the problem. The key symptoms include an earlier onset of symptoms, spread
of symptoms to other body parts like the arms, more intense symptoms that
require higher doses of the dopamine drug for relief. Increasing the dose
provides temporary relief but leads to more augmentation.
To get more info on the presentation and treatment of augmentation, read this white paper on augmentation written by several of us RLS experts.
RLS does tend to worsen with age but most often very slowly over decades.
Sent: Tuesday, December 29, 2015 12:20 PM
Subject: What to expect from drug holiday?
Iíve had RLS for several years. Initially, my personal care physician started me on ropinirole 1 or 2 mg (I donít remember). I began chasing my symptoms and eventually was taking a pill every 4-6 hrs.
Chasing symptoms was not good enough, so I started seeing an RLS/Parkinson's specialist. Eventually I was taking two 8mg ropinirole XL every evening, plus occasional 2 mg pills for break out symptoms.
Being aware that this was a huge dosage, and having read about augmentation, etc, I met with another specialist who felt that ropinirole is a terrible choice for treating RLS. He said that it may be fine for Parkinson's, but not for RLS, and that Parkinson specialists may recommend dosages too high for RLS treatment. He recommended completely stopping dopamine agonists, but carefully. His detox plan would be to stop the ropinirole and replace it with a 27 day taper of Mirapex, followed by 10 days taking no meds. Iím not sure what meds, if any, will be on the other side Ė maybe small dosage narcotics.
Iíve been told that the last 10 days are horrendous. Iím not sure what to expect from the 27 day taper Ė will it also be horrible? Does this sound like a reasonable plan, given my history with RLS and ropinirole?
At this point you have severe augmentation and should see a real RLS
specialist (check with the RLS Foundation at
www.rls.org to find one near you). RLS specialists do not typically
recommend using Mirapex to taper off Requip (ropinirole) as both drugs are
fairly equal for treating RLS.
There are ways of treating augmentation without having to endure the agony of withdrawing from dopamine agonist drug. Check out the augmentation treatment white paper (http://irlssg.org/augmentation/) that several of us experts have published describing how to treat this problem.
A Reply from Bruce
Sent: Thursday, December 31, 2015 10:28 AM
Subject: Re: What to expect from drug holiday?
I'm wondering if there is a "normal" for RLS folks. On my journey into augmentation, I was seeking a symptom-free life. Was that reasonable or deluded?
When I would start to get the symptoms, I would take an as needed 2 mg ropinirole. I've had lots of days with no symptoms, and some with. Was it reasonable for me to expect, and to chase a symptom-free life? Or should I anticipate living with inevitable sensations, and just try to wait for them to pass?
You are asking a complex question. The answers depend on several factors.
In general, we like to treat RLS so that that majority of symptoms are relieved. For example, if you have symptoms during the daytime when you can move and be active, it may be better to just walk around for a while until the symptoms are resolved (this lets us use less medication). However, if the symptoms are disruptive (such as if you have to do desk work for your job that is not possible with RLS symptoms or bedtime RLS symptoms that prevent sleep), then the symptoms should be treated with medication.
The issue with dopamine agonists and augmentation is that symptoms will get worse with time in most patients requiring a need for more medication. Without an increase in medication, RLS symptoms will increase and become disruptive. As you increase the medication, augmentation will worsen requiring even more dopamine drugs thus causing a viscous cycle.
It is for that reason, that several experts are recommending that dopamine agonists no longer should be considered as first line therapy. However, there are other treatments that donít cause augmentation and can treat RLS very well.
Typically, with the patients that I see (who are typically amongst the worst of the RLS patients), over 95-98% of patients achieve at least 95% control of their RLS symptoms. I may not treat the less than 5% of symptoms that occur in a non-disruptive fashion if the patient is agreeable. However, the majority of my patients have few if any RLS symptoms that are significant or bothersome.
A Reply from Bruce
Sent: Monday, January 04, 2016 6:43 AM
Subject: Re: What to expect from drug holiday?
Iíve been reading everything I can find about RLS and treatment options starting with my current medication Ė ropinirole. Iíve read that dopamine agonists mimic the action of naturally occurring dopamine. They stimulate dopamine receptors, increasing the capacity of those receptors to collect dopamine, effectively increasing dopamine activity.
But any assets they bring to RLS treatment are negated by their potential for augmentation.
If stimulating the dopamine receptors is so important, what about enlisting natural occurring dopamine through exercise, massage, meditation or pleasurable hobbies? Have there been any studies showing if any of those activities have an impact on RLS? What about massage directly on the calves? And what about acupuncture?
Have there been PET scans of people actively having RLS symptoms?
We have not found any natural way to enhance dopamine that would help RLS.
Activities that keep the mind active (like doing a crossword puzzle, playing
solitaire, etc.) does help RLS but it has nothing to do with dopamine.
Massage may help temporarily but the effects are not long lasting. There is a Relaxis vibration pad that helps will working (at 30 minute intervals) that is approved by the FDA for treating bedtime RLS. Acupuncture has not been shown to be effective.
Brain scans of several types have been performed but conflicting information has resulted.
Sent: Thursday, January 07, 2016 6:49 AM
Subject: Requip questions
I have had intermittent RLS for some time and it used to be controlled with Klonopin and avoiding medicine that aggravated it. Two months ago I detoxed from Fentanyl and Oxycodone. On day three the RLS began after no issues for several years. It was extreme and in my arms and legs. I began the Requip and now am on 2 mg. Some days for the last week it seemed like it was getting better but now it's back.
My ears scream since starting this as well as extreme nausea, prickly hands feet and arm and leg weakness. Will this ringing in my ears go away? It hasn't changed in intensity with dosage. It's just as bad as the first few days. Do people often have a remission of symptoms?
There are several issues with your treatment. Klonopin is not really an RLS
drug but rather a very long acting (half-life of over 40 hours) sleeping pill
(no RLS when you are asleep, of course). If a sleeping pill is necessary there
are many that are shorter acting and thus better for treating the insomnia
associated with RLS.
Opioids are amongst the most potent treatments for RLS so they were likely treating your RLS symptoms and stopping them (the Fentanyl and Oxycodone) has simply markedly decreased your RLS treatment. Requip may not be adequate at 2 mg to relieve your severe RLS symptoms. Requip is known to cause nausea which is often helped by taking the medication with food (although this may delay the onset of action by 1 hour). Taking it with food may or may not improve the other side effects.
The other issue with Requip (and Mirapex which is a similar short acting dopamine agonist) is that in the long run, it tends to cause a worsening of RLS symptoms called augmentation. This is dose related so higher doses put you at higher risk.
Although some patients do get spontaneous remissions of their RLS, most find that the disease worsens over several decades.
It may be very helpful to see a real RLS specialist to manage your complex RLS issues.
Sent: Thursday, January 07, 2016 10:08 PM
Subject: Question about Horizant and RLS
Recently, my neurologist started me on Horizant. In the past I was taking 1200mg of Gabapentin and 100mg of Tramadol at 8pm. This combination worked fairly well, but my symptoms slowly got worse. My symptoms got so bad I started losing sleep and experiencing restlessness earlier in the evening and extreme tiredness throughout the day.
When I saw my neurologist last month he switched the Gabapentin with Horizant 600mg and kept the Tramadol dose the same.
I am pleased to say this treatment works perfectly! I haven't had a single episode of RLS for a month and the side effects are hardly noticeable. I feel terrific when I wake up!
However, I read on the Horizant website that this medication has caused cancer in some patients. Do you think this is statistically significant? It seems to me patients with RLS tend to be older (and more likely to use Horizant) and cancer risk increases with age anyway. Is my analysis correct? Also, I don't drink at all or smoke with no cancer in my family so I am not really too concerned.
I've contacted you in the past about Gabapentin and Tramadol and you were not concerned, but what about Horizant?
There has never been a reported case of cancer being reported in patients with the use of gabapentin or Horizant (remember, Horizant turns into gabapentin after it enters the body). However, there are reports of pancreatic cancer in rats but only at extremely high doses not used in human patients. Therefore, your concerns about cancer are not really warranted.
Sent: Friday, January 08, 2016 7:24 PM
Subject: RLS & Lyrica
I am a 35 year old mother of two who has primary RLS. It has been very severe for the last 6 years. I have it in my arms and my chest as well as my legs. I have been taking methadone, 5mg at bedtime, for about 3 years. It has worked wonderfully. About 6 weeks ago, I started having symptoms breakthrough during the day. Now it is starting to interfere with my sleep. When it does, I cannot sit down. I must pace and move at all times. The only change that I has occurred is that I am tapering off of Lyrica.
My neurologist wanted to put me on it last year to see if it helped and it did not. I have had anxiety and depression issues if I taper off of it too quickly. So I have been going so slow. Could that be the cause of my increased symptoms? Could the dosage of methadone be inadequate? If it is the methadone, should I ask for a dosage increase or should I ask for something to be added or used to replace it.
My neurologist does not have any other patients that are healthy and have
primary RLS with my severity. She seems to have never been comfortable with
prescribing methadone. I was put on it by a neurologist that left the state. He
had me at a much higher dosage, which I decided that I didn't need, and was
given the okay to lower the dosage. Now I feel like I need more but how do you
ask for something like methadone from a doctor that is not comfortable
prescribing and only does so because she inherited your case from another
There is a very simple answer to your problem.
Lyrica is a very potent treatment for RLS. Tapering down on this medication (down slowly or otherwise) will surely cause an increase in RLS since you are now supplying less treatment for your RLS. Even though it may not seem that it helped initially (especially if you were on methadone which is the most potent RLS treatment), coming off Lyrica has an excellent chance of triggering increased RLS symptoms. If you go back up on your Lyrica dose, it is very likely that your RLS symptoms will improve.
You should discuss increasing the Lyrica back to your original dose and see if that helps. If not, there may be other solutions to your problem other than increasing the methadone dose.
A Reply from Melissa
Sent: Saturday, January 09, 2016 9:35 AM
Subject: RE: RLS & Lyrica & Horizant
Thank you for your prompt response. I had a feeling that the Lyrica may be the cause. I guess it puts me in a bind. I do not feel that Lyrica made enough of a difference and, I guess most importantly, it is around $800 per month. I don't want to keep taking something that doesn't work and is ridiculously expensive just because it is hard to get off of. But I also cannot continue to feel the way I am. I am not sure what I should do.
There are 2 possible options.
The first is to transition to Horizant. It is available only as a brand name product but it is FDA approved for RLS so that it may be covered by your insurance (there is also a $0 co-pay card that you can get from your doctor (or from the drug maker, Xenoport). As Horizant works on the same receptors as Lyrica, it should take care of your RLS.
Another option is to try generic gabapentin which is inexpensive so coverage is not an issue. However, gabapentin does not get absorbed very well (which is why Horizant was created as a better deliver system for gabapentin). A small percentage of patients may achieve RLS relief with gabapentin if doses appropriately (smaller doses that can get better absorbed more often).
A Reply from Melissa
Sent: Saturday, January 09, 2016 7:39 PM
Subject: RE: RLS & Lyrica & Horizant
I have tried gabapentin and had horrible side effects. I have not tried Horizant. If I had negative side effects would it even be worth trying Horizant? I have every dopaminergic drugs with either no luck or side effects. It's a class of drugs that I don't seem to do well with. Would I just swap the two or would I have to lower Lyrica and add the Horizant? I seem to be sensitive to side effects, and it took me a long time to get to the suggested dosage of Lyrica.
If I don't sound like a candidate for Horizant, would something like a drug holiday be a good idea? I have heard other RLS suffers talk about doing them.
If you had issues with gabapentin then Horizant may not work well for you. If
you were to try it, a simple switch (depending upon your current Lyrica dose)
may be feasible.
However, given your history, the simplest approach may be to just increase your methadone a little and get off the Lyrica.
Sent: Saturday, January 09, 2016 4:41 PM
Subject: Treating augmentation from Requip?
I am a 48 year old female who has suffered from RLS since childhood. About 10 years ago, I began taking 1 mg of Requip each evening, and I truly thought a miracle had occurred!
However, I have been suffering from augmentation symptoms for the past two years, so approximately one year ago, my doctor increased my dosage to 2 mg of Requipó1 mg in late afternoon, and 1 mg before bed. In general, this did nothing but make my symptoms worse. Specifically, the RLS begins earlier in the day, and I feel the restlessness in my arms and spine, as well as my legs. All of this seems unsurprising, based on what Iíve read.
Three months ago, my doctor switched me from 2 mg Requip to TWO .25 mg Mirapex tablets per day, suggesting I take one pill in the late afternoon and one before bed. The pharmacist suggested because of augmentation issues I try one pill first to see if that provided the relief I needed. The first 6 weeks or so were great! I took one .25 mg tablet of Mirapex early every evening, and all of my RLS symptoms were gone! Once again, I thought I was in heaven!
Alas, around week 8 or so, I started having problems with the Mirapex. Daytime symptoms of any kind were still held at bay, as were evening symptoms, but once I went to bed, my legs began their restless dance and would continue for several hours, if not all night. To try to counteract this nighttime discomfort, I tried taking a second .25 mg tablet before bed, but the symptoms have been very quickly getting worse. Iíve noticed some mild afternoon symptoms in my arms and spine, again, and nighttime has been absolutely miserable. This past week, for example, Iíve averaged only 3 hours of sleep per night, and one night I managed only 90 minutes of relaxed, non-restless sleep.
Oh, I have also taken .5 mg of Clonazepam periodically the past 10 years. Usually I refer to it as my ďvacation drugĒ because I tend to use it when Iím not sleeping at home. But I have been taking this more and more often, as well, hoping it will help when the RLS meds donít.
My family doctor doesnít seem to know what to do, so Iíve spent hours searching for information (when you can only sleep 3 hours per night, you have plenty of time to research!) I have a pretty good understanding of all of the options out there, but have no idea where to begin as far as suggesting new/additional treatments.
Based on what Iíve told you, what might you suggest as a possible next step for my RLS issues?
As you have already figured out, the problem that you are experiencing is
called augmentation which is a worsening of your RLS due to taking a dopamine
drug (like Mirapex or Requip). Although the drug helps initially and with each
increase in the dose, each further increase in the dosage adds fuel to the fire
causing the augmentation process to accelerate. Therefore, RLS experts strongly
advise that patients with augmentation should not keep increasing their dopamine
agonist dose as that will ultimately result in heightened problems with RLS. Due
to these concerns, I currently recommend that the dose of Requip should not
exceed 1 mg per day and Mirapex not exceed .25 mg per day.
Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms (Horizant, Lyrica or gabapentin will only help marginally in this situation).
It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.
An alternative treatment (which is still fairly new) is to change to a long-acting dopamine agonist. The Neupro patch is the only FDA approved long-acting dopamine agonist for treating RLS (up to 3 mg/day) and may work well for patients who are having augmentation on relatively lower doses of Requip (up to about 3 mg/ day) or Mirapex (up to about .5 mg/day). For higher doses of those drugs, a switch to long-acting Mirapex ER or Requip XL may be helpful (but these drugs are not approved for treating RLS so may not be covered by insurance plans). When transitioning from short-acting dopamine drugs to long-acting ones, the dose of the long-acting drug is started at the lowest dose and may be increased on a weekly basis as needed. The short-acting drug can be used to supplement the long-acting ones until the optimum dose of the long-acting dopamine drug is found.
Check out this link for up to date information on how to treat augmentation from a group of us experts that is available on the web:
Sent: Thursday, January 14, 2016 3:39 AM
Subject: Need suggestion-Only Mirapex helps but it's also hurting me!
I have and DO suffer from RLS & PLMD quite severely for over 15yrs. I had tried a few drugs to no avail and then found Mirapex - it's my life saver and also my life ruiner. My Neurologist had told me quite a while after I had been on Mirapex that it may cause Obsessive / Compulsive Gambling, at that time I had said.. oh no not me, I never gamble. I do have an addictive personality and have been in AA for 20+ years. In 2013 all of a sudden I found myself in Casinos and have been unable to resist going and it's bringing me financially, mentally, emotionally to the bottom.
I have also had a few drinks the past year and honestly do not have a desire to get drunk nor do I want to gamble, but I'm having such a huge terrible struggle. Mirapex also makes me crave sweets once it's taken effect and also makes me incredibly sleepy! I've been searching on the web for something that would do the same 'life saving' treatment without the OCD type side-effects that I could suggest to my Neurologist. Without the Mirapex I actually get suicidal thoughts and incredible aggressive feelings inside, with complete exhaustion from walking. So, overeating, gambling, alcohol or suicide? There has to be something better.
I have many illnesses (RA/OA/FM/GERDS, COPD, Asthma, APNEA, and chronic pain, CFS, Hypothyroid, CAD.. the list goes on) I'm on many medications, but anything besides Ciprolex or Gabepentin that sedates me makes my legs so much worse! I have been diagnosed with PLMD also and the RLS has become secondary, meaning the creepy crawly things I could care less about, it's the leg/limb involuntary movements that are horrible. Driving, sitting too long its a huge no-no, and not too good when it's my driving foot.
I've heard of new drugs out since 2010 approx when I started Mirapex. Do you have any suggestions? If I have to take a .5 mg or 1 mg Ativan I have to also take a Mirapex. I try to keep my dose down of Mirapex only due to his increased sedation as I do need to function.
HELP please, at the end of my rope in BC Canada
You do have a difficult case. With the compulsive gambling, the only
treatment is to stop the Mirapex. That will markedly worsen your RLS and PLMS.
Since gabapentin was not helpful, there are not a lot of choices left. We typically prescribe opioids for patients who have failed dopamine agonists and gabapentin but Canadian doctors are very reluctant to prescribe those medications.
A Reply from Cherie
Sent: Friday, January 15, 2016 5:03 AM
Subject: RE: Need suggestion.. Only Mirapex helps but it's also hurting me!
Thank you for answering. My Neurologist made me try clonazepam even though I had been in them a decade earlier & my condition went thru the roof! Anything sedative makes it worse. The only opiates I'm able to take is morphine. I learned it also reduced my condition however I can take 2mg (for pain) at a time otherwise it's side effect of drowsiness is too high & can't work etc.
What is your opinion on the leg muscles playing a part in these conditions?
At the times my RLS and PLMS are active, if I push on or try to massage certain
muscles in my legs (near the knee) it will actually create the same actions as
the PLMS with the jerking...And what about some type of block?
The leg muscles do cause RLS but may trigger or relieve RLS symptoms. Mild to
moderate exercise may help RLS but vigorous exercise may trigger it. Massage or
stretching the legs typically helps but it is not fully understood as to how or
why it helps.
Nerve blocks do not help.
Sent: Monday, January 18, 2016 3:08 PM
Subject: RLS in a 14 year old female
I reside in Brisbane, Australia. I have a background in nursing and public/environmental health with some experience in research.
I have a 14 year old daughter with restless leg syndrome/periodic limb movement disorder, anxiety, exhaustion, and depression. This was diagnosed after the sudden onset of exhaustion at the end of 2012. The initial thoughts were of an autism spectrum disorder without a focus on co-morbidities. Recent psychiatric assessment indicated that she is at risk of self harm. She has been conclusively diagnosed with inattentive ADHD and has at least some autistic features (e.g. cognitive rigidity). She has not responded to therapy until recently. There is consistent agreement that she is very bright and creative.
She was treated with an iron infusion in 2014 after severe nausea when different types of oral supplementation were tried. Her ferritin post infusion was 61 (14 June 2014). Her treating sleep/respiratory pediatrician was aiming for 50 Ė 75. A pre-infusion sleep study showed she had 65 periodic limb movements per hour whilst asleep. After the iron infusion, this dropped to 0/hour on follow up sleep study. Her current ferritin and hemoglobin levels are 29 and 24 respectively (19 December 2015). Her ferritin levels are challenging to maintain. I am now giving her Ďfefolí (270 mg ferrous sulfate) and folic acid 300 mcg three times a week, which she is tolerating at present.
Thankfully periods have not yet started. She has just had a further blood
test to check TSH levels, etc, but these have been normal in the past. She was
receiving iron supplementation prior to her most recent blood test, but
intermittently. She is a committed pisco vegetarian. Currently, I have observed
that she seems to be sleeping in a light and restless manner on some nights, and
not on others. She is awake during the night on occasion with restless legs and
continues to report daytime disturbance with this condition. I will take her
back to her sleep/respiratory pediatrician if we canít get her ferritin levels
up in a timely manner. Iím not optimistic about this without a further iron
She has taken 20 mg of compounded Ritalin on school days. This will be decreased to about 14 mg per day. Higher doses have affected her mood and caused severe appetite suppression. Strattera led to significant weight loss.
I will soon start her on magnesium supplementation after a discussion with a dietician to ensure that the iron/magnesium supplementation is appropriate.
My daughter is also taking fluoxetine 20 mg mane. This has been increased from 10 mg mane. Her overall mood and social functioning are better but the exhaustion/sleep are worse than when she was on 10 mg of fluoxetine. She can easily be in bed for 14 hours each night and wake up exhausted. She weighs about 36 kg and is just over 5í tall.
We will try the Ďrelaxisí product that you appear to endorse.
I have an article entitled ĎDepression and RLS: A guide to help you control and manage your RLS.í (Spring 2011) available at: www.rls.org. This article states that Wellbutrin has neutral to beneficial effects on RLS and PLMS, with nortriptyline, doxepin and trazodone having neutral effects.
I would be most grateful for your thoughts about the most appropriate anti-depressant/anxiolytic for her to take.
It is hard to give you specific advice without actually seeing your daughter.
I can add some general information that should be helpful. It is also not clear
how severe her RLS symptoms are and if they are actually disruptive. If they are
not disruptive, then no specific treatment is necessary. It is quite possible
that her current problems may have little to do with RLS.
The PLMS are interesting to observe but may actually have no impact on her medical issues. We generally do not treat PLMS as it has not been demonstrated yet that treating them is beneficial (although there are some exceptions). Furthermore, the PLMS may be dramatically increased due to taking fluoxetine.
Wellbutrin is RLS neutral (and sometimes beneficial) and works reasonably well for some patientís depression but it may cause an increase in anxiety levels. The SSRI and SNRI medications (like fluoxetine) are better for depression and anxiety but worsen RLS. Nortriptyline is sometimes helpful but it is an older medication that has increased side effects. The addition of doxepin may be an error as I have found that it worsens RLS very often (I was actually on the medical advisory board of the RLS Foundation at the time and may have missed that as we prepared that publication and have just sent an email to the Foundation to look into this issue).
Treating RLS with intravenous iron depends greatly on the preparation of iron used. Most of the sucrose based ones are not helpful. The goal is typically to increase the ferritin levels above 200 in adults and there are no guidelines at for adolescents. The lack of complete response in levels may also be due to an inadequate amount of iron in the infusion (but again, there are only rough guidelines for adults). Of interest, many RLS patients seem to lose iron at a much faster rate than expected and the source of this lose is not known.
The Relaxis pad has only been studied in adults but it might provide relief for an adolescent with RLS and provides no risk like taking drugs. However, it is still not clear whether her symptoms warrant an expensive device like the Relaxis pad.
Sent: Monday, January 18, 2016 4:26 PM
I would like your opinion about PLM during sleep. Would you consider violent thrashing about and jerking of the head a symptom of PLMD?. This happens alongside the usual leg kicking.
When PLM occur, they may be quite violent and also occur in both the legs and the arms. When that happens, the head may jerk/thrash around also. If the head movements occur without leg or arm movements, then that is most likely not due to PLMS.
A Reply from Kim
Sent: Tuesday, January 19, 2016 4:18 PM
In my support group we are noticing an increasing number of RLS sufferers reporting pain in the legs amongst their symptoms ,alongside the urge to move. I have not seen pain mentioned in the diagnostic criteria. I would describe my own symptoms as creepy crawly sensations but not pain. Is pain considered a RLS symptom if accompanied by the urge to move?
About 20% or more of RLS sufferers will call the symptoms in their legs
ďpainfulĒ. It is not clear if the actual symptoms are pain or if the experience
of having continuous discomfort is resulting in the term painful. It may be
similar to be tickled; a few seconds or so is not at all painful for most but
prolonged tickling may easily be perceived as painful and torture.
However, I have had many RLS patients describe their symptoms (with the urge to move) as actually pain. It is often hard for them to describe the pain but terms such as gnawing, deep, aching are often used. These ďpain RLS patientsĒ are a small minority of the RLS population.
Sent: Tuesday, January 26, 2016 11:23 AM
Subject: Re: Requip
My sleep clinic have moved me away from dopamine agonists as you recommended. They are now trying me on Oxycodone starting at 5mg with the possibility of going up to 20mg if required.
Initially it seemed to help. My PLMD was only causing me to wake two or three times a night.
Recently I moved to a new GP who prescribed me with 5mg of OxyContin and I
woke up around 7 to 8 times through the night. Is 5 mg of OxyContin the same
strength as 5mg of Oxycodone? Is there one which is specifically better at
reducing arousals from PLMS?
The opioids like oxycodone are not very good at treating PLM (although they
are really good for treating RLS symptoms otherwise). They have not really been
compared for treating PLM (especially since they donít work very well for that
purpose) so it is difficult to say if there are better ones to use for PLM. My
guess is that they will all be more or less equally poor and I would recommend
staying away from opioids for PLM. OxyContin is a slow release form of oxycodone
(it releases the oxycodone over 8-12 hours) and the lowest dose is 10 mg. Taking
OxyContin 10 mg might be somewhat similar to taking 2 oxycodone tablets 4-6
It is still not clear whether the PLM are really the source of your awakenings and if they should be treated at all. If treatment is really necessary, my choice would be to go back to Lyrica and find a reasonable dose that does not cause significant side effects but helps you sleep through the night.
Sent: Thursday, January 28, 2016 11:32 AM
Subject: RLS and Varicose Veins
Recently I have read some articles claiming that there is a correlation between varicose veins and RLS. One article stated that 98% of people treated for their varicose veins had complete relief from their RLS symptoms. I have both of these issues and have for most of my 46 years. What is your opinion on this? I was just curious to see if it is worth checking on it. Since RLS is a neurological disorder, I'm interested to know how having varicose veins could be related. .
Both RLS and varicose veins are common problems so it is expected that many
RLS patients will also have varicose veins. There are a few medical studies that
have found that there may be a relationship between RLS and varicose veins and
treating the varicose veins may help RLS symptoms. However, the studies that
were done were really preliminary type of studies that were not very
scientifically rigorous. None of them had a placebo control group and the issue
is that placebo treatments may help RLS for a while.
I have seen many patients who have had varicose vein surgery with no benefit for their RLS. I have also seen a few patients who have had temporary benefit from varicose vein surgery but all of those patients had been told that the surgery would help their RLS. I do not know of any patients (which does not mean that they do not exist) who had permanent improvement of the RLS after varicose vein surgery.
My personal opinion is that varicose veins have nothing to do with RLS and I would not recommend any of my patients to have varicose vein surgery to help their RLS symptoms.
Sent: Wednesday, January 20, 2016 11:58 AM
Subject: PLMS and sleep
I am a 47 year old female with a history of anxiety and insomnia, which I
have been addressing with supplements. Approximately 12 months ago, I started
taking .25mg of Xanax, once or twice a week, to help me get to sleep and stay
asleep. I have been taking levothyroxine and liothyronine, for hypothyroidism,
for 30 months.
About 9 months ago, I started developing classic RLS symptoms, which would onset before bedtime. Not knowing about RLS, I treated them with massage. Not surprisingly, I had difficulty falling asleep and was often awakened in the night by leg discomfort. I was pretty miserable. This went on for about four months, until my naturopath diagnosed me with Primary RLS and started me on iron and magnesium. Within a few days, the ďrestless legĒ part of RLS reduced to tolerable, 24-hour, bug-crawling sensations in my skin and a vibration sensation in my leg muscles; however, I started experiencing PLMS movements in my lower legs that would interfere with my sleep. The PLMS movements have since spread, and I experience involuntary movements/jerking steadily throughout the night in my legs, hips, fingers, shoulders, and occasionally my wrists, abdomen, back, and neck.
They make it difficult to fall asleep and wake me frequently throughout the
night. These movements are rarely accompanied by other RLS symptoms. I also,
rarely and only within the past month, have daytime involuntary movements in my
legs, hips, shoulders, and fingers. I rarely have difficulty sitting during the
day, or suffer classic restlessness, either in the day or night. I no longer
have the bug-crawling sensations, but do have popping/bubbling sensations and
stronger vibration sensations, both in my leg muscles; these also occur around
the clock, but only occasionally; they are noticeable but not bothersome.
Since the PLMS started, my sleep routine has been severely disrupted. Now, with the aid of .5 mg Xanax, I sleep well for 4-5 hours, then toss and turn, suffering from PLMS, often with several hours of insomnia, for another 3-4 hours. It is only on nights when I use Xanax that I waken moderately refreshed. I have tried every supplement I have seen mentioned at rls.org and other sites focused on RLS, including my first exposure to cannabis (via a medical dispensary), and nothing provides me with consistent sleep other than Xanax. However, I'm concerned about tolerance. I have not yet tried any other prescription medications for RLS, as I believe my ferritin is too low and I'm anxious about augmentation and the inevitable withdrawal.
Three weeks ago, I found my ferritin at only 42, and I have since increased my iron intake. (I now take 50 mg of Thorne Iron Bisglycinate with 250mg of vitamin C, twice daily, separated from food and thyroid medication.) I have an appointment with a local sleep specialist scheduled for next week. I have too much anxiety for an in-clinic sleep study.
Do you have any recommendations about what treatments might be good starting points for me, or any other feedback that might steer me toward relief?
Amy in Seattle
Xanax is not a treatment for RLS or PLMS but it does help patients with those
problems get to sleep (similar to treating patients with back pain or headaches
to help them get to sleep without addressing the real problem). You are correct
that tolerance may occur with the daily usage of benzodiazepines like Xanax.
My current best recommendation for patients with your problems would be to have your doctor prescribe Horizant. If that does not help (or is too expensive but there is a $0 co-pay card available), then gabapentin or Lyrica may be considered. These drugs should help the RLS/PLMS problem and also help you sleep without concerns of tolerance or dependence developing.
Although Mirapex or Requip may help your problems for the meantime, augmentation occurs quick readily with time so I would suggest you avoid those drugs unless the above treatment fails.
Sent: Friday, January 29, 2016 3:33 AM
Subject: Aspartame and RLS?
I had occasional issues with uncomfortable tingly legs at night that made me toss and turn. A friend sent a link to a youtube video which I watchedÖ ďSweet Misery: A Poisoned World.Ē I immediately dumped my diet dews down the sink and cut out all aspartame. Iíve had no further leg tingling at night. The problem disappeared on the first night after having no diet drinks.
I was not a huge diet drink user keeping intake to 1-3 a day because years back when I drank them constantly I had heart arrhythmiaís which stopped once I figured out it was due to the diet drinks. However, I love diet mountain dew so was drinking them again in moderation which wasnít causing any heart irregularity. No more! Not after watching that. Iím happy to say the uncomfortable tingly creepy crawly feeling in my legs has gone.
Although we have heard a few anecdotal reports of RLS patients linking their
symptoms to aspartame, the vast majority of RLS sufferers have not found
aspartame to worsen their RLS.
It is also very possible that the high levels of caffeine in Mountain Dew is what is responsible for your arrhythmias and RLS symptoms.
However, it sounds like you would be better off without those artificial drinks.
Sent: Saturday, January 30, 2016 10:59 AM
Subject: Re: Augmentation and RLS
I hope you won't mind my contacting you again. I have just returned from seeing yet another neurologist, this time l traveled to London as l had been informed that this consultant was an RLS specialist.
I explained my symptoms of augmentation and that l had stopped taking the Co-Careldopa (Sinemet), after two and a half years, on the 23rd November 2015 . Following MRI and Nerve Conduction tests which show no issues, my GP started me on Ropinirole on the 7th January. I started with a small dose and increased on a weekly basis, the result was very disappointing as l was not seeing any improvement. By the time l reached 3 pills per night l was experiencing severe nausea and vomiting, even when taking the medication with food. It seems that l cannot tolerate this medication.
The London consultant told me that augmentation is common and that it was the norm for the RLS to worsen and present in the arms and hands. However, he said he had never known it to present in the feet or torso, which mine does, and very occasionally in my head. He also said that it takes months not weeks for the augmentation to abate once the Co-Careldopa is stopped and that the Ropinirole ought to work if the Co-Careldopa did. He told me to come back in a couple of months when he was convinced all would have returned to normal.
I tried to tell him that l am now in constant pain and the RLS is 24/7. I still get temperature surges and sweats and I cannot sleep at night. I am exhausted and very low. He reluctantly agreed to prescribe me clonazepam, which is to help me sleep.
He wants to refer me to an endocrinologist, but l am unsure as to why. I am
really at my wits end, the RLS is severe and does not abate. It is extremely
painful now and painkillers do not help anymore.
I would prefer not to take another dopamine agonist, but do not know what other alternatives there are to help. Please if you are able could you advise what l should do next. I am so confused and fearful.
As stated in my previous email letter, the augmentation process resolves in
the majority of RLS patients in 10-14 days. If RLS levels donít get back to
baseline within that time frame, then there may be other factors that are
responsible for the persistence of your RLS symptoms. It is extremely unlikely
that your RLS symptoms will get better in the next few months (or ever) without
It is correct that changing from levodopa to a dopamine agonist like ropinirole or pramipexole usually relieves the augmentation (temporarily) and if you could tolerate a higher dose you may have gotten relief.
Clonazepam is simply a sleeping pill and only helps RLS by putting you to sleep. It is an addicting medication and also has a very long half-life of over 40 hours (which often results in next day sedation) and there are many better shorter acting sleeping pills to use for that purpose.
RLS symptoms (especially with augmentation) can occur anywhere in the body. In fact, I published some cases of RLS occurring even in the face (which is much less common) a few years ago.
For severe cases of RLS such as you are experiencing, typically only opioids will bring full relief. However, as I stated previously, it is very unlikely for doctors in the UK to prescribe opioids for RLS. Gabapentin or Lyrica may help somewhat (and may be the next best choice if opioids cannot be prescribed for you) but it is unlikely that they will provide full relief.
You can read (and bring a copy to your neurologist) of the recent article that several of us experts published on the Prevention and Treatment of Augmentation which will be published in the Journal Sleep very soon. It details the use of opioids for treating augmentation such as yours.
A Reply from Lesley
Sent: Tuesday, March 15, 2016 10:38 AM
Subject: Re: Augmentation and RLS
l was sincerely hoping that l would not need to contact you again, but unfortunately here l am. In my previous e-mail l told you that l had been prescribed Clonazepam for my RLS, after having been unable to tolerate ropinirole. The Neurologist that prescribed the Clonazepam only gave me one months supply at 0.5 mg per night, he was adamant that it was a short term fix to allow me some respite from my symptoms and some much needed sleep. The plan was to go back to my GP and discuss alternatives to the Ropinirole.
The Clonazepam worked well and l was sleeping through the night. The symptoms
abated, including the sweating/ flushing that had also been an issue for me.
Towards the end of the first month l had started to wake during the night with
some return of the RLS in my legs, so suspect a degree of tolerance was
happening. I returned to see my GP and explained this. My GP said he was happy
to prescribe more Clonazepam at 1mg per night. I pointed out that the
Neurologist had been clear that there were better options, although he did not
say what they were. My GP was of the opinion that if the Clonazepam was working
we should stick with it. I was not overly happy, as l wondered what would
happen, if say l went on a long haul flight and the RLS started up, the
Clonazepam would not be good during the day? But he said it had a long half life
and remained active in the system.
Shortly after this, I thought that l had caught a virus as l developed an upper respiratory infection, earache, sore throat and dry hacking cough. I could not shake it off. I then had episodes where l simply fell over, with no prior warning. This happen about once a day for a week and then after about ten days on the 1mg dose, it happened twice in one morning. I was not fainting or losing consciousness, there was no dizziness or nausea, just crumpling to the floor. I saw an emergency GP thinking it was my earache causing a balance problem. The GP sent me straight to A&E, the outcome was that they diagnosed me with Muscular Hypotonia, caused by the Clonazepam. I was advised to stop taking it immediately, it has been 6 days and l have had definite withdrawal symptoms which are slowly getting better. I have not had any further episodes of falling.
I am not currently on any medication and the RLS symptoms are back in my legs, arms, hands and torso, including the sweating/flushing. I have been unable to see my GP as he is on holiday. I feel really unwell and am now very wary of trying prescribed Meds to help treat my symptoms, but also realize that l cannot function with my RLS as it is long term.
Do you have any suggestions as to where l go next treatment wise, l do not really want dopamine drugs, because of the augmentation risk, Ropinirole makes me very sick and Clonazepam likewise does not suit me? As you suggested, no one thus far really seems to understand this condition and the treatments offered so far have only resulted in my feeling loads worse than l originally was, which cannot be right?
It is unfortunate that there is so little understanding about RLS in the UK
that they often resort to prescribing clonazepam for the disease. As you can
tell from my previous emails, this is not one of my favorite drugs. Tolerance
does occur frequently and if you did tolerate the 1 mg dose, it likely would not
take too long before you needed even higher doses.
At this point, you should discuss the options of trying gabapentin (starting at 300 mg and increasing by 300 mg if necessary every 3-7 days to a maximum dose of 9-1200 mg) or even better, Lyrica (starting at 75 mg and increasing by 75 mg every 3-7 days to a maximum of about 300-450 mg). These drugs are typically taken 1-3 hours before bedtime.
Another great option would be opioid therapy but those are often very hard to obtain in the UK. The odds are excellent that they would take care of your RLS at a very low (safe for the long-term) dose.
A Reply from Lesley
Sent: Saturday, March 19, 2016 9:45 AM
Subject: Re: Augmentation and RLS
l have been prescribed Gabapentin by my GP on the advice of the Neurologist. My prescription says to take 100mg three times per day. I took the first 100mg dose last night (Friday) at 10.00pm and had a strange night. The RLS in my legs seemed to calm, but not in the arms, hands or chest. I had no hot sweats. On Saturday morning l simply could not wake up, my eyelids would not stay open. I eventually managed to get up at 10.00 am.
I felt really groggy, like l was intoxicated and have had three hot flushes thus far, which is odd as l have not experienced them during the day for a long time. I should have taken another dose on rising this morning, but felt so out of it that l didn't want too. I have not taken the afternoon dose for the same reason. It is now 4.30 in the afternoon and l am only just feeling normal again. I realize that if l don't take my Meds, l cannot expect to get relief, but l felt so out of it even after one small dose, that l am questioning whether l am able to tolerate this type of medication.
You suggested taking 300mg before bed, would it a make a difference to take it all in one go? I want to feel well again, but really don't want to feel like a zombie in order to do so. If this is a normal first reaction and will abate, then fine, but l would rather not get started on this medication if this is what l can expect long term. Feeling as l have done today, l could not safely drive for example.
Other users have said it has helped them enormously and are taking much
higher doses without side effects, so l am puzzled that it has effected me quite
so profoundly this quickly.
Your thoughts would be greatly appreciated, as always, many thanks.
The commonest side effect of gabapentin is sedation. This can be used as a
benefit if it is taken 1-3 hours before bedtime as it will help you sleep. For
patients who get drowsiness with this medication, daytime use is not
recommended. RLS worsens in the evening/bedtime so for most patients, taking it
before bedtime is ideal.
Speak to your doctor about taking your gabapentin 1-3 hours before bedtime. You could start at 100 mg and increase the dose every few days by 100 mg until you find the effective dose (assuming that side effects do not limit its use).
Sent: Sunday, January 31, 2016 1:18 AM
Subject: New to ropinirole
Since getting Chronic Fatigue Syndrome over 10 years ago, and being unable to work, I have developed a delayed sleep disorder (my normal sleep range is 4 am to 2 pm, but at times I can't get to sleep as late as 6am). I've tried Zopiclone 7.5 mg but it does not reliably put me to sleep unless I double the dose which I do sparingly. I've tried a variety of melatonin routines, bright light upon waking, dim light at night but nothing reliably worked. I don't drink coffee or alcohol, or smoke.
For a few years, restless legs bothers me on average 1 or 2 nights a week when I get in bed. Those nights, I have to get up, ride a stationary bike or have a hot bath before trying to sleep again. Sometimes it takes 3 tries. There's a long family history of "restless legs" in bed but no one has been treated. My case is harder as I have foot neuropathy so can't walk much, and I get sclerotherapy for varicose veins as needed - maybe 7 times in the last 10 years
I just started ropinirole 1 mg 4 weeks ago, and it worked like a dream. Ropinirole allowed sleep onset within about 1 hour of taking it at 10 pm, even at the starting dose of 0.25 mg and I sleep all the way thru the night, and I wake up with more energy. I no longer take melatonin, or wear orange tinted glasses at night or need to keep hitting snooze when the alarm goes off in the morning - it's really great. (My doctor told me he used to prescribe 0.25 mg only, but a specialist told him that was too low and so the goal is to be on 1 mg, so I titrated up from 0.25, to 0.5, to 0.75 over 3 weeks, even though it appeared to be working at just 0.25)
I do notice that on 1 mg, within an hour my head feels squeezed which forces me into my bed where I fall asleep fast, so I thought I would taper down to 0.5 or 0.25 to see if I can still get the desired effect without feeling so bad. This led me to do some research and I found your site.
Now I realize that I should've avoided dopamine agonists. Given I don't have augmentation yet, and have been on it only a month, should I taper off on my own, or get a specialist referral to help me? Or can I just continue on 1 mg or less for a while so I can still enjoy being on same time schedule as the rest of the waking world while I figure out what else to try?
By the way, you warned that SSRIs can worsen restless legs, but I feel I can't experiment any more in that area - I tried maybe 8 different antidepressants that all gave side effects until I found one that was livable. I remember Wellbutrin and Effexor had bad side effects for me, and I recall I had taken Trazodone at some point too. For the past few years, I take Cymbalta 60 mg but don't remember the restless legs being as much of a problem as they are recently
Previously I took Celexa but the mood benefit seemed to wear off. During that time, I did a sleep study which found I had high periodic limb movements but it wasn't disturbing my sleep quality, and could've been from Celexa. I've tried Lyrica, &gabapentin in the past for pain and mood but both made me too tired the next day. Most other antidepressants caused my acid reflux to flare. I've had several depressions in the past so was told to stay on SNRI/SSRI for life, as I have a big family history of depression /anxiety too.
Unfortunately, the information about using higher doses of ropinirole is
completely incorrect. If dopamine drugs are to be used, then the lowest dose
that is effective is clearly the best dose and increasing the dose after an
effective dose has been achieved does not make any sense and can only increase
the risk of side effects and augmentation. It is very possible that you can
decrease your dose of ropinirole back to .25 mg and it still should work well
since you have only been on the medication for one month.
The alternative medications include gabapentin and Lyrica so you may not have other options at this point since you have had issues with those drugs in the past.
If you need your SSRI medication to treat your depression then you should stay on the medication and any increase in RLS symptoms should be treated around the use of your SSRI.
A Reply from Joan
Sent: Monday, February 01, 2016 3:01 PM
Subject: Re: New to ropinirole
Might you clarify a couple of things?
From reading the letters & answers on your site, I understood that even a low dose, 0.25 mg, of ropinirole will eventually give augmentation in most people. Is this incorrect?
I have no side effects from ropinirole right now, so can I assume that if I stay on the same dosage, I won't get any of the confusion, daytime sudden nap, that are warned side effects from this drug, or could those be developed over time?
And since Neurontin and Lyrica don't agree with me, and I do need to stay on my SSRI, I thought that my likely option for long term help would be a low dose opioid instead of a dopamine drug. Do you think opioids are less desirable than ropinirole?
Augmentation is definitely related to the dose of the dopamine drug. The
major and recent studies found that Mirapex at .25 mg will cause augmentation at
a rate of about 5%/year and .5 mg at about 8%/year. Since ropinirole at .25 mg
is about half to a quarter as potent as Mirapex .25 mg, we should expect a lower
rate of augmentation with low dose ropinirole. However, with long enough use of
ropinirole, I expect a significant percentage of patients will eventually
develop augmentation (but it may take quite a while). However, we need more data
(studies) to determine the exact amounts of augmentation with ropinirole. I have
seen many augmentation cases with ropinirole at .25 mg but they are much easier
to treat than patients on higher doses of dopamine agonists.
The only other long term issue (that wonít show up in the first few months) is ICD (Impulse Control Disorders) such as compulsive gambling. This problem can be very disruptive but may not present for months or years after starting a dopamine agonist drug.
Opioids are not first line therapy and currently should only be used after failure/intolerance of the other first line drugs (dopamine agonists and gabapentin/Lyrica). Furthermore, you will have great difficulty getting a prescription to treat RLS with opioids in Canada (although it also can be difficult to get opioids in the USA from many doctors).
Sent: Tuesday, February 02, 2016 9:27 AM
Subject: Rebound from pramipexole
I have severe restless legs. Iím currently taking one pramipexole 0.5 mg and two oxycodone 5 mg once a day in the evening. The medicine seems to help when I take it in the evening but it doesn't do anything for my symptoms during the day. If I take the medicine early in the day then I will have symptoms in the evening. At least during the day I can stay active. I know I have rebound from the medicine. I canít even sit in the car for a hour long drive without extreme discomfort.
I am going to my doctor who specializes in sleep medicine. She is somewhat
familiar with restless leg syndrome. I want to get off my medicine but am not
very confident that my doctor can help me. I have Kaiser Insurance now and no
one at Kaiser specializes in this disorder. What do I do and what can I tell my
doctor when I go in for my visit?
If your RLS symptoms have been occurring earlier in the day since you have
been started on pramipexole (and especially if you have had to increase your
pramipexole dose and add oxycodone in the evening to cover evening worsening
symptoms) then you are experiencing augmentation (not rebound) which is a
worsening of RLS due to taking a dopamine drug like pramipexole.
Most doctors have no idea how to treat this problem and will likely want to add pramipexole doses earlier in the day to cover your symptoms. That will work well temporarily but will add ďfuel to the fireĒ of augmentation and ultimately make the problem worse.
We normally try to get the patient off the short acting dopamine drugs like pramipexole using either long acting dopamine drugs like Neupro (not very Kaiser friendly as it is only available in brand name form) or using higher doses of opioids (oxycodone). The process can be difficult for inexperienced doctors but several of us experts have produced an article that goes over this process in detail. This should give you all the information that you need (the article will be published in the Journal Sleep in the next few months).
A Reply from Linda
Sent: Tuesday, February 02, 2016 10:58 PM
Subject: RE: Rebound from pramipexole
Thank you for answering my email. If I take more of the opioid and stop the pramipexole will I still go through withdrawals and If I take more of the opioid how much would I need to take? Won't I eventually have the same problem with Neupro as I do with the pramipexole?
Those are reasonable questions.
It typically takes a doctor who has some expertise to advise you how to take the opioids to prevent withdrawal issues (marked worsening of RLS symptoms for about 10 days). However, after the 10 day worsening period, the RLS calms down markedly and is much easier to treat requiring much smaller doses of opioids. Thus the dosage of opioids needed is a moving target and that needs some expert guidance by your doctor on an ongoing basis during the first few weeks.
Augmentation can occur with Neupro but is much less frequent. Keeping the dose at a maximum of 3 mg also reduces (but does not eliminate) the risk of augmentation. It is still not clear whether the long acting dopamine agonists like Neupro simply delay the onset of augmentation (or even mask it as the first symptoms of augmentation is earlier onset of symptoms which may obviously treated by a 24 hour drug) or really has a lower incidence of augmentation. That is why I often prefer the first choice of eliminating all dopamine drugs and using opioids.
Sent: Friday, February 05, 2016 8:13 AM
Subject: My RLS and Mirapex solution
Thanks to this West Coast RLS site, I have found Mirapex .125 mg (pramipexole) and the solution to my RLS problem. I have had RLS for over 35 years, in varying degrees. My RLS is inherited, and some of my siblings and children also suffer from it.
Needless to say I have literally tried dozens of prescriptions, supplements and coping mechanisms to no avail. This last year has been particularly bad, and my sleep has suffered greatly. About a year ago I discontinued taking Clonazepam .5 mg (after about 10 years), and really made my RLS worse. Itís a good thing I am retired.
Recently have tried Requip (again) and Lyrica, and both did not work and had very bad side effects. The Mirapex, even though in the same family as Requip (ropinirole) works completely differently for me. From the very first pill on the first day, I have not had ANY sign of the Ďnerve spasmsí of RLS that affected me. Itís now been 2 weeks and has been more than I could have hoped for. I still am taking a few supplements, but slowly cutting them out. I was taking as many as 10 or 12 aspirins a day, and have cut that to very little. Aspirin was the only thing that knocked out my RLS previously. I expect to continue cutting everything except the Mirapex in the next few weeks.
I totally sympathize with my fellow RLS sufferers and hope this information helps someone.
Mirapex can do wonders for RLS even when Requip had failed. However, try to
keep your dose nice and low where it currently is as higher doses (and sometimes
even the lowest dose) may result with time in a worsening of RLS called
augmentation. The augmentation can be very hard to treat so preventing it is
Check out this link for up to date information on how to prevent & treat augmentation from a group of us experts that is available on the web:
Sent: Tuesday, February 09, 2016 4:39 AM
Subject: Requip causing increased irritability, agitation and insomnia?
I believe the last time I sent you a letter I was in the last trimester of my pregnancy and up to 4 mg of ropinirole a day. I was lucky if I got 2 hours of sleep a day. I was so unbelievably depressed and didn't know how I was going to survive another day my RLS symptoms were so bad. It's been about 11 1/2 months since I gave birth to a beautiful, healthy and totally normal (knock on wood ) little girl. The only side effect I did have was I was unable to produce milk or breastfeed which was unfortunate. I am happy to report that I am down to. 5 mg of Requip now that I take one time at night. My goal is to finally get off it completely. I've been taking 1000 mg of magnesium a day and I exercise all the time now so I think these things have helped tremendously.
The one thing I did want to mention or ask about is if any of your patients have reported a general increase in irritability, anxiety, agitation or anger while on Requip? I've been on it for about a year and a half now and in general I am happy, content, full of energy etc. But I snap at my husband and my parents and basically anything that annoys me. I'm on edge a lot and I don't drink a lot of caffeine. I'm also on lamotrigine, sertraline and Trazodone which should be helping with the agitation.
I also want to mention experiencing insomnia while taking Requip especially
when on the higher dosages. The trazodone has been able to offset some of that
plus just being active all day. Just wanted to share my experiences with you.
Insomnia with Requip is not uncommon. However, irritability and mood changes
are a much less common side effect.
You might want to discuss with your doctor about a change over to Horizant and see if you can get off the Requip completely.
Sent: Thursday, February 11, 2016 3:48 AM
Subject: Toe and foot movements in an RLS patient on Mirapex (pramipexole).
I have had restless legs for over ten years now but it is well controlled with Pramipexole 13 months ago the second and third toes on my left foot started jumping of their own accord. This happens every time I sit down. A neurologist has diagnosed it as Myoclonic movements connected with my restless legs and is going to give me some medication for it.
I also have Ankylosing Spondylitis and am not convinced of this diagnosis as EMG tests were done on my foot but nothing else. I have had a lower back MRI which did not show anything.
Is there anything else I should be doing to get rid of this awful sensation in my toes? It is hard to get any rest which becomes very stressful.
It is possible that your toe and foot movements are related to your RLS. However, treating with more pramipexole (which is the likely treatment) may initially help your symptoms but eventually will probably worsen them (called augmentation). In fact, it is quite possible that the toe and foot movements may be the first sign of the augmentation process starting to occur.
To read more about how to treat and deal with augmentation, read http://irlssg.org/augmentation/
Sent: Sunday, February 14, 2016 4:58 PM
It seems when I have a full bladder my RLS symptoms are worse. When I urinate symptoms ease up. My doctor blew me off.
That is a not uncommon symptom noted by RLS patients. However, it has no clinical concerns nor do we know why it happens.
Sent: Monday, February 15, 2016 3:03 AM
Subject: High ferritin level and RLS
I have found your advice so comforting over the last few years. I am male , 69 , not overweight. I live in Ireland where there seems to be no real medical understanding of RLS. Have had spinal reconstruction after accident three years ago. Have had RLS as long as I can remember. After the operation I experienced very severe RLS from opioid withdrawal , My doctor prescribed Quinine, and when that failed put me on Mirapex .18 mg. That has worked well for a year now.
During my extensive internet research I read about iron
levels affecting RLS - my blood iron has always been too low to donate blood. So
we are grand with the dopamine deficiency theory here! However, I then got a
serum ferritin test and now it gets interesting - it came back as 1183! I have
no overt iron overload symptoms but am getting tested for hemochromatosis.
I am now experiencing some augmentation the last few days and am beginning to panic.
Where do I go from here? If it is not a dopamine issue should I move to Gabapentin, if so what dosing schedule? Do I need to use OxyContin or other, to help withdrawal? I tolerate oxycodone ok. My doctor won't prescribe methadone (may not be licensed for this?).
What is the relationship between such high level of ferritin and RLS? It was 136 in 2010, and went up to over 3000 in 2013 in ICU after my accident. Now 1183. There seems to be no medical expert here on RLS.
It does sound like you have hemochromatosis and there
are several case reports of RLS patients with this disease. The problem with
hemochromatosis is that you canít utilize the iron so it is high in the blood
but still may not be getting sufficiently into the brain to help your RLS.
Oxycodone does work well for RLS and augmentation so no problem if methadone is not available. Here is a link for an article written by several of us experts on how to treat augmentation:
Sent: Thursday, February 18, 2016 12:51 PM
Subject: Magic for me
If you suffer from RLS, please try Kratom. Unreal how effective it works. It's a plant, part of the coffee family. Helps maintain your bodies alkalinity and works through Dopamine enhancement. Life saver. For real.
I have not gotten any reports yet of Kratom helping RLS and I have had access to thousands of RLS patients. I do get sporadic reports of many substances/drugs that seem to help only a very few (or even only one RLS sufferer). If the Kratom helps you, then continue to take it as long as you get relief from Kratom.
Sent: Monday, February 22, 2016 11:28 AM
Subject: Child with RLS
I swear I think my son came home from the hospital with RLS. He has never been a good sleeper. His doctor said it was gas at first, then colic, then nothingÖ..until one night when he was about 3 years old he woke up in the middle of the night screaming and kicking his legs. I thought he was having a seizure. To make a long story short, since that night he has seen Emergency room doctors, his pediatrician, neurologists, endocrinologist. They have done genetic testing, all types of blood work, sleep studies, etc all to find NOTHING.
At this point, he tosses and turns ALL night, he kicks his legs, bangs them on the bed and I believe it has now moved to his arms!! He complains that they ďfeel funnyĒ. In the last month it has also started to affect him in the day time. He cannot sit for long periods of time without discomfort in his legs and arms. He stretches them constantly and whines a lot because he cant get relief. It is starting to affect him in school because he is so tired all the time, can't concentrate, and is very irritable from lack of sleep.
He has been on Baclofen, Valium, Neurontin, OTC RLS
meds, and Tramadol without relief or minimal relief at best. He has finally been
referred to a sleep doctor next week. I'm scared because of all the doctors we
have seen, it seems like none of them want to diagnose a child (he is 5 now)
with RLS even though the symptoms are so obvious!!
RLS is not uncommon in children but it is very uncommon
for pediatric and sleep doctors to be able to diagnose RLS in children. Once
fairly recent study found a 2% incidence of RLS in children (although that study
looked at kids aged 8 and above).
It does sound like your son may have RLS and as such, you may need to bring him into a real RLS specialist (check the RLS Foundation website for sources). Children often respond very well to treatment and that can make a remarkable difference in their life.
Sent: Thursday, February 25, 2016 5:52 AM
Subject: Levodopa for RLS?
I have suffered with RLS for some 25 years now mostly in my legs but sometimes in my arms, my husband says I kick out an night which is what seems to wake me. I have tried most medications including Mirapex and ropinirole but these two medications seem to make my symptoms far worse including legs jerking almost upright whilst relaxing on the sofa and also full body jerks whilst trying to sleep including my neck. I have also tried Gabapentin, Lyrica etc etc before finally going back to Clonazepam because that at least gets me off to sleep for a couple of hours and relaxes my mind for the time I am then awake.
I was wondering if levodopa would help in any way although I know it is similar to the other two and I know I could only take it 203 times a week but that would be something if it works?
The odds are not very good that levodopa would help you.
Even if it did help for a while, most all the patients using the drug get
augmentation over time which is a gradual worsening of the RLS disease. You
would not get augmentation taking it 2-3 days per week, but the days off the
drug would be quite miserable.
The most likely treatment that would help your problem is low dose opioids. However, most doctors (even specialists) are not aware of opioid treatment for RLS and are typically reluctant to prescribe it. Seeing an RLS specialist would be very helpful.
Sent: Sunday, February 28, 2016 10:47 PM
Subject: Question about changing from Mirapex (pramipexole) to Requip (ropinirole)
I'm up at 1:30 AM because my doctor is switching my meds from Ropinirole, 2 mg - twice a day to Pramipexole .25 mg - once at night. She had me wean myself off of the Ropinirole, which caused several nights of horrible sleep (basically none). I asked her for a mild sleeping pill (because I knew what I was in for) but she refused, only suggesting Benadryl or melatonin (both of which I've tried and do nothing).
Now I'm trying the Pramipexole. I tried on the first night / nothing. I was so uncomfortable, I took a second (she told me that I could take two if need be). Still horrible. I got up and took a third - still nothing. The next day I felt ok. Symptoms, of course, were better because I was active. I took a nap later in the day and did fine. Bedtime came and I took my regular one dose and went to bed and slept fine. Now we come to tonight - can't sleep a wink. My arms and legs are driving me crazy. Is the pramipexole.25 mg dosage equivalent to the 2 mg of ropinirole? And if so, should I take them as I did ropinirole (one at noon and one before bed)?
I'm really not sure of my doc yet. We just moved here
(to Florida) and I miss the doctor I had in Illinois. Not sure what to do about
any of it.
I have several concerns with your questions and your
doctor's plan for treatment.
You have not stated why you are switching from ropinirole to pramipexole but I will assume that the problem is because the ropinirole is no longer fully effective (let me know if this is incorrect). If that is the case then you are experiencing augmentation (a worsening of RLS from taking a dopamine drug like ropinirole) especially since your twice a day of ropinirole already implies a worsening of RLS from ropinirole requiring an earlier dose of the drug.
With augmentation, the goal is generally to get completely off the dopamine drug. Changing to another dopamine drug (in your case switching from ropinirole to pramipexole) is not recommended. Even if you were to change to pramipexole, you would need .5 to 1 mg of pramipexole (and likely in divided doses) since ropinirole is 1/4 to 1/2 as potent as pramipexole. Your worsened RLS is a clear indication that you are not on an adequate dose of pramipexole if that is the purpose of switching (again, switching is not a recommended option in your case).
Furthermore, adding a mild sleeping pill would have been a reasonable option while taking Benadryl is contraindicated as it makes RLS worse (please see our Medical Alert card which you can download from our website which contains this information).
You should see a real RLS expert for your transition off ropinirole and/or check out this recent link for up to date information on how to treat augmentation from a group of us experts that is available on the web:
Sent: Tuesday, March 01, 2016 6:49 AM
Subject: Interesting nighttime footage of PLMD
I came across your website from browsing one of the RLS forum pages which said that this website had the most useful information on the Internet.
I'm 25 years old, male and from the UK. I've had anxiety and depression symptoms, very severely since 2011. Since then, I've always been tired no matter what antidepressant I tried and the health professionals always thought it was part and parcel of the mental health problems. Recently, in the last 6 months, the tiredness has gotten extremely severe, to the point where I have the biggest bags under my eyes and I am struggling to do anything. I have also started having suicidal thoughts because of it. As a last ditch attempt to try and find out if there was anything happening in my sleep, I set up my webcam to record whilst I slept. I discovered that I am twitching, moving, rubbing and jerking my legs every 30 seconds. I've also got hand movements and sometimes my neck will jerk as well. In 8 hours of sleep, I change position about 16 times. I also wake up frequently during the night.
I've gone to my doctor who viewed to footage but said he wasn't an expert in sleep disorders and wasn't sure it was normal or not. He issued me a starting dose of 0.25 mg of ropinirole yesterday. I'm also having restless leg symptoms during the day that are agonizing and the tiredness is surreal.
I wanted to ask you a few questions as there isn't much information over here for me. I've read a lot that there's no cure for this and it gradually gets worse over time. I'm only 25 so does that mean I'm going to be disabled when I'm older from it? Also, how effective is medication? Does it resolve the movements during the night even though I'm severe or am I always going to feel this severe tiredness during the day? What would be your recommendations for medications for anxiety and depression as I've come off all antidepressant medication now.
Sorry if I sound desperate but I'm really scared that I'm going to be like this for life or that the side effects of the dopamine medications will permanently ruin me. I don't know much about restless legs syndrome or periodic leg movement disorder and I read that it's very rare for this severity to be in someone as young as me. Could it be anything else?
It is difficult to answer your questions without seeing
you as a patient but I can give you some general information and guidelines.
The leg kicks are most likely PLM but we generally do not treat the PLM. The reason for this is that although the PLM cause a lot of jerking movements, they typically do not seem to be responsible for disturbing the true quality of sleep in most patients (even when they are quite severe).
If you have true RLS symptoms during the daytime (an extreme urge to move when at rest and awake) that are disruptive, then that should be treated. Ropinirole is currently one of the drugs of choice but many experts (me included) do not like using that drug as it tends to worsen RLS over time. Gabapentin, Lyrica or even Neupro are much preferred. All the above drugs will also help the PLM problem as does ropinirole (if it is taken close to sleep time as it only lasts 6-8 hours).
There are other drugs that can be used but are not available in the UK or very difficult to get prescribed in the UK.
A Reply from Graham
Sent: Thursday, March 03, 2016 3:12 AM
Subject: RE: Interesting nighttime footage of PLMD
I've struggled with anxiety and depression really bad for the past 5 years and for about 3 of those, I've been chronically tired. I did always chalk it up to those problems but I've tried about 5 SSRI's with no improvement over the years. The tiredness would sometimes deepen a bit on days, but always lingered.
I've also always had a feeling of not liking to keep my legs still even when I was little. I thought it was normal that you had to change position if your legs felt uncomfortable or that you couldn't sit still. I seem to get the restless legs worse in the morning than at night which I've read is very unusual. My doctor has changed me from Ropinirole to Rotigotine after I read your treatment options. I start on that later today. What is the average duration that Rotigotine seems to work for as I read that the dopamine agonists stop working after a while.
Also, one last thing, I have a really hard time telling
whether at times I have idiopathic restless legs syndrome, or whether it's due
to my anxiety causing it. Do you get many patients who have severe anxiety and
restless legs syndrome?
Dopamine agonists like ropinirole and rotigotine stop
working due to augmentation occurring. The augmentation process is a worsening
of the RLS symptoms due to being on a dopamine drug (it is not fully understood
why this happens but it may be due to down regulation of the dopamine receptor).
The augmentation may occur within months but may even occur after a decade. It
is related to the dose of the drug and perhaps other factors such as low iron
levels. However, we cannot truly predict when and if a patient will get
augmentation. It does seem to occur much less frequently with longer acting
dopamine drugs like rotigotine.
Anxiety and depression are very common in RLS patients so it is quite often that they occur together. As such, it is difficult to separate them especially as anxiety makes RLS worse and RLS makes anxiety issues worse. The SSRI drugs used to treat anxiety and depression also make RLS worse.
A Reply from Graham
Sent: Saturday, March 05, 2016 10:30 AM
Subject: RE: Interesting nighttime footage of PLMD
How quickly can I expect rotigotine to work? I've been on 1mg for 2 days now and noticed nothing, even feel like my arms and incredibly restless.
I'm in absolute torture with this and don't know what to do. I can sleep for 8 hours and wake up more exhausted than I did before I went to bed and it's getting worse and worse over the years. I'm now so exhausted, I feel like I'm going to collapse and I'm only 25 years old. This has all happened so quickly and I don't know why.
The rotigotine patch works within a few days. However, we do not increase the dose for 1 week which gives your body a chance to adapt to the increasing doses.
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