Patient letters on RLS symptoms and remedies- Page 114

 

Kicking RLS/PLMD Patient



Sent: Tuesday, March 01, 2016 8:03 AM
Subject: Question about Ropinirole

I've suffered from RLS since I was a teenager, and I will turn 60 this year. For about the past 5 or 6 years, I've been taking Ropinirole at what I consider a very low dose Ė 1mg/day. The actual prescription is to take it three times per day, but since the single tablet works (after I wait about 2 hours), why take more? As an aside Ė the single tablet stated working for me within ten minutes when I originally started taking it, so I assume I've built up a tolerance. I imagine at some point I will need to take more than one tablet per day.

Ever since taking the Ropinirole, I've found that I have a case of violent vomiting about every 2 or 3 months, usually within an hour or two after I've taken the pill for the evening. I had never experienced this in my life until taking the Ropinirole. (It took me a while to make the probable connection.) Is it possible that the drug "builds up" until your body takes command and forces it out? I've noticed that vomiting is one of the side effects, but seems to be an uncommon one, and haven't (easily) found other people mentioning this. I can't imagine my life without Ropinirole, though, so will put up with the occasional bout of sickness.

Parkinson's Disease runs in my family (paternal grandmother and my father). Does having RLS, and family history of Parkinson's, pretty much guarantee that I'll eventually suffer from Parkinson's? The two conditions seem so closely related.

Peggy

Medical Reply

Ropinirole does not build up in your body as it has a half-life of about 6 hours (which means it gets metabolized fairly quickly and will not accumulate unless you have liver problems). Although 1 mg/day is a relatively low dose (it is approved up to a maximum of 4 mg/day), I currently recommend not to exceed that 1 mg/day as augmentation (a worsening of RLS due to taking a dopamine drug like ropinirole) very often occurs with time and is dose related.

Nausea is a side effect of ropinirole and taking it with food will reduce this problem but will delay the onset of action of the drug by about 1 hour. Since this happens quite infrequently, it is somewhat difficult to be sure that ropinirole is actually the culprit as it should then happen almost daily (which is what I see with my patients who have nausea with ropinirole). Rather than increasing the drug in the future (which is what most doctors who are not expert in RLS would do), it might be better to add another drug like Horizant, gabapentin or Lyrica.

Having RLS does not increase your risk for developing Parkinsonís Disease in any way.

A Reply from Peggy

Sent: Wednesday, March 02, 2016 9:00 AM
Subject: RE: Question about Ropinirole

The idea of taking the Ropinirole with food is interesting, because in my case, if I take it too close to eating, I am way more likely to get sick. As for the dosage, do I understand correctly that even rather than (if necessary) increasing the Ropinirole up to the prescribed total of 3 mg/day, it would be better to add one of the drugs mentioned to my current 1mg/day? I will delay this as long as possible, to be sure, but just want to confirm this is your suggestion, for a future discussion with my doctor.

Thanks, too, for the statement about Parkinson's. I am so happy to hear the RLS won't be the lead in to PD. I hope to dig deeper on your website very soon.

Peggy

Medical Reply

I currently do not like to even start my patients on short-acting dopamine drugs like ropinirole and pramipexole. However, if you are already on the ropinirole, you should try not to go over 1 mg/day. That should significantly reduce the risk of developing augmentation from the drug.

Therefore, adding another drug would be a very good idea rather than increasing the dose of ropinirole.


Sent: Thursday, March 03, 2016 5:21 PM
Subject: RLS treatment?

I have severe RLS which is bad during the day as well as at night. Nucynta along with Neurontin (gabapentin), an anti-seizure medication, are extremely effective, although I hate the stigma of taking a narcotic long-term. My Dr is wonderful and sees me monthly due to state laws. I now seldom have break-through symptoms, and find Ambien helps on those nights. Exercise or stretching is helpful. My grandmother & 4 of her 5 daughters have/had RLS, including my mother.

A supportive spouse is essential for me. We are in this together. Now my 36-year-old has symptoms but is so active he doesn't require medication....yet.

Is quinine really helpful? Are the side effects dangerous?

Phil

Medical Reply

Sounds like you are doing well with your current treatment.

Quinine is not helpful at all for RLS. It may help prevent leg cramps but has not role for treating RLS.


Sent: Friday, March 04, 2016 12:35 PM
Subject: RLS and getting off Ropinirole

I am a 72-year old woman who has had RLS off and on for several years and it gets progressively worse! It started to worsen and be more frequent about 4 years ago and about 3 years ago I sought help from my Primary Care Dr. who gave me 2 mg. of Ropinirole at bedtime...this was HEAVEN for one month and then it was just like I was not even taking anything! The Dr. then sent me to a Neurologist as well as a Vascular specialist to see if there might be other problems. The Vascular specialist did all kinds of tests and said my circulation was great and that I did not need him!

The Neurologist just said I probably just needed a higher dose of Ropinirole and increased it to 3 mg. at bedtime...that did not help at all...the RLS was more intense and the Neurologist just said I was not giving the medication time enough! So I waited a period of a few weeks and returns to my Primary Dr. who then suggested I might want to try a different Neurologist...which I did and he did nerve conduction tests, MRI, etc. and said I needed to increase my dose to 3 mg. twice a day as well as take Naproxen twice a day and Lyrica twice a day! I tried that for a few days and WOW...I was a zombie...I could not function taking that much medication and did not have RLS but felt AWFUL!

When I returned and told the Neurologist he just shook his head and said I might want to try exercises and he demonstrated by throwing himself down on the floor and doing about 20 modified push-ups! I then shook my head at him and reminded him that I am a 72-year old woman with a bad back, knees and legs and IF I could get down on the floor like that I would not be able to get back up without calling for help! He felt I was being unwilling to follow his suggestions...so I did not return to see him again! He had also had me try Baclofen which did nothing for me! I have also tried Gabapentin and Lyrica which do not stop the RLS and they make me feel drugged!

The Ropinirole eventually stops the RLS...but it almost always gets worse for about 1-2 hours before it stops! My evenings are miserable and now it is spreading into the daytime hours as well! Sometimes when it is really bad during the daytime I take 1/2 of the 3 mg Ropinirole and it usually gives me relief within about 1 hour...but it makes me really sleepy and I have to sleep for at least 30 minutes to one hour for relief!

After extensive reading I feel that I REALLY NEED to get off of the Ropinirole but so far I have not found a Dr. who is willing to help me with that...they maintain that I need to continue with the Ropinirole! Do you have any suggestions as to how I can get myself off...can I do it by just cutting down on the dosage? If not, do you have any suggestions of how I might find a Dr. who is knowledgeable enough to help me get off this medication?

I feel that it is harming me in all sorts of ways....I just feel terrible most of the time and have gained MANY pounds since taking it and I am very forgetful where I was not just a few years ago! I am told that is my age...and yes, maybe it is just a result of my age...but I truly feel it is the medication and I really want off it! Thanks in advance for any help you can offer.

Linda

Medical Reply

You have a clear case of augmentation (a worsening of RLS from taking a dopamine agonist like Requip/ropinirole) and getting off the drug is the correct solution. It is too bad that most doctors, even specialists have no clue how to treat difficult RLS cases and especially augmentation.

Although it is possible to get off the ropinirole on your own, it would be extremely difficult and your RLS will get dramatically worse for about 2 weeks (you may not be able to sleep at all). This processed can be made markedly easier with proper treatment (see http://irlssg.org/augmentation/).

As far as finding an RLS specialist who can help you, try the RLS Foundation (www.rls.org) or look on the various RLS forums where other RLS sufferers may help guide you to one near you. With proper treatment, you have an excellent chance to get back to normal with minimal if any RLS issues.

A Reply from Linda

THANK YOU so much for your quick response!  I knew in my heart that I am suffering from augmentation and have been for quite awhile...but the Drs. made me question my own gut feeling and I (nor them) even used the word augmentation...but I had repeatedly told them that my RLS was 100% worse than when I started taking the Ropinirole.  They nearly had me convinced it was just the progression of the disease...I am so glad that I found you and the RLS Foundation site!  I will pursue this with my Primary care Dr. and try for a referral to someone who can help me get off this Ropinirole and find some peace! 

Linda


Sent: Friday, March 04, 2016 12:55 PM
Subject: symptoms and treatments?

My name is Marcus and Iím 42. RLS has been with me since í99 and has developed in my arms now. I cannot take OTC sleep medication as they have a reverse affect on me as well as cold medicines and cough syrups. This has been a debilitating disease causing lack of sleep, frustration, anxiety (fear of my bed), and trouble with work and my relationship. My signals last 3-5 seconds and the frequency is between 20 and 25 seconds apart.

I have been prescribed muscle relaxers that donít work. In your opinion, is there a problem with considering the possibility that a drug used as a sedative may surpass the level of consciousness that is active in sending the signals to my arms and legs giving me both a level of sleep the disease denies me and may decrease the signals by achieving a deep sleep. The drugs Iím listing are: Xanax, Seroquel, and even a 10mg valium. It may also help in mentioning, I cannot take OTC medicines for sleep as they work in reverse.

This ďtickle reactionĒ to contract all the muscles in the affecting limbs should not in my opinion be considered a ďmuscle relaxerĒ treatment. It clearly originates as a neurological disorder and needs to be addressed accordingly. Please give me your opinion, and if the wordage is a bit harsh I apologize as you can guess I havenít rested much in the last few weeks. I do value your opinion and would love to attend any sleep study as a test subject in helping end this.

Cheryl

Medical Reply

The issue with OTC sleeping pills and cold medications is that they typically contain sedating antihistamines that are well known to worsen RLS. Please check on our website for the RLS Medical Alert Card that contains a list of these medications and alternative that are safe for RLS patients.

Muscle relaxing medications do not help RLS. Sedatives only help if they put you to sleep (since you canít feel RLS, headaches or other discomforting sensations while asleep). In fact, if you try to stay awake after taking a sedating drug, RLS symptoms are typically worse.

There are lots of good treatments available for RLS so please see a doctor who is fairly expert in this disorder. Some of the older medications (like Mirapex and Requip) tend to make RLS better in the short run while worsening it in the future. You can check on the RLS Foundationís website (www.rls.org) for doctors who specialize in RLS and have an excellent chance to treat you correctly so that your RLS will not be an issue in the future. Sleep studies are typically not helpful to diagnose or treat RLS.


Sent: Tuesday, March 08, 2016 6:51 AM
Subject: RLS and the flu

I have had all day RLS for over twenty years now. I am 40 now. It has always been kept in check with 1mg of Klonopin once a day. I can go through my life since I work standing up and, at night, when I am home, my body almost subconsciously flexes my calves constantly when laying down or going to sleep.

I started getting a bad case of the flu on Wednesday and I am still home recovering from it and out of work. My question is can the flu worsen symptoms of my RLS or change it in some way or is the flu so severe that my RLS is terrible right now while my body tries to heal the damage from the flu from the past six days? Will my RLS go back to my pre-flu level?

Jaime P.

Medical Reply

Typically the flu should not worsen RLS unless it makes you very sleepy (RLS is worse when sleepy/fatigued) or if it keeps you up at night.

If you are taking cold remedies for the flu (that contain sedating antihistamines like Benadryl), they can worsen RLS also.

Either way, you should get back to pre-flu levels of RLS once you are better.


Sent: Wednesday, March 09, 2016 11:30 AM
Subject: RLS & opioids?

I am a 43 yr male and have suffered rather severally for almost 30 yrs. I was able to control if for awhile with the use of Ambien. As I got older it became less effective so I stopped taking and began a search for something new. Fast forward to now and I can tell you I have literally tried everything! About two years ago I started taking Mirapex and thought I had finally found the one. About six months ago it started to work less effectively so my doc increased the dose, it helped for a bit but then out of nowhere I started to feel the horrible restlessness throughout my body.
The back of my neck, shoulders, and down my arms. It was a nightmare that has severely affected my life.

I have had two serious back injuries and for the last two years I have managed that pain rather well the 7.5 mg oxycodone. There have been days when I felt I didn't need the pain meds so I didn't take any. On those days, I felt my full body restlessness. I started to notice that when I take the pain meds my RLS vanishes. So one night I took pain meds with Ambien and got the best night of sleep I had had in years! I went to my doc with this thought, to see if maybe I could get extra pain meds to now take care of the night and not break in to what I needed to get through work. He suggested gabapentin, which I have tried before and it didn't help.

He wondered if the pain meds were making it worse when I actually believe I was getting augmentation from Mirapex! He the said try Lyrica, and I did last night with big reluctance. 75 mg dose and I didn't sleep a wink, due to severe RLS. I am scared of what I read about Lyrica at higher doses. I need help and don't know what to do. I fully understand what oxycodone is and feel it's a little unfair to hold back from people who truly benefit from it. I even took a drug test for the original script and would do so again.

Zach S.
Indiana

Medical Reply

Opioids are reasonable for treating RLS when used in low doses (up to 20-30 mg/day). We tend not to see tolerance or dependence in patients without a history of drug abuse.

Since you have not done well with gabapentin and Lyrica (Horizant is another choice), opioids are the next choice. As you have found out, they working extremely well to control RLS symptoms.

Since you are suffering from augmentation, it may be reasonable to try to wean off Mirapex and just use oxycodone by itself. After a week or 2, you will probably need less oxycodone to control your symptoms.

However, since most doctors do not know much about the use of opioids for RLS, you may have problems getting your local doctors to prescribe these drugs as needed to control your RLS.

A Reply from Zach

Sent: Thursday, March 10, 2016 7:26 AM
Subject: Re: RLS & opioids

Until yesterday I have felt somewhat alone in this battle. It is very encouraging to know that it really may be the Mirapex and that after a couple of weeks possibly needing less of the other meds.

Zach S.


Sent: Friday, March 18, 2016 9:37 PM
Subject: Fentanyl and Restless Leg Syndrome

My 91-year old mother has had severe back problems for years and has been prescribed and using Fentanyl patches throughout that time in varying strengths. She had a stroke several years ago that affected her left side (left leg and left arm/hand are somewhat immobilized) so she is now living in an assisted living facility near me (I'm her daughter/guardian).

When she first began the Fentanyl patches, years ago, she was on the higher dose because of severe back pain. Over the years that dosage was decreased gradually so that up until recently she was at the 25 mcg/72 hour patch. She had told me that she felt good with no back pain and no Restless Leg Syndrome that had been a bit of a problem in the past. So, I suggested recently at her last yearly physical with her doctor, that might we try reducing the Fentanyl patch strength even further to 12.5 mcg/72 hour and if any problems arose, we could go back to the 25 mcg/72 hour patch as this was to be a 'trial run' on the lower dose? She takes so many medications that I thought reducing the strength of the Fentanyl patch might be a good thing.

Well, the new, lower dose 12.5 mcg/72 patch was applied and the next day she began to experience the Restless Leg Syndrome characteristics which disrupted her sleep that night and has continued into the daytime hours. Not only is it affecting her legs but she had the characteristic sensations in her arms, also. So, I called her doctor today and he prescribed a 30-day supply of Ropinirole (0.25 mg/one at bedtime) while she stays on the 12.5 mcg/72 hour Fentanyl patch. His nurse said he wanted to wait and see how this works for her.

However, as I am reading the letters and your answers on this website, I am wondering if I should ask that she go back to just the Fentanyl 25 mcg/72 hour patch as I see that Fentanyl can not only continue to be a great help for her back issues but also for this Restless Leg Syndrome. I just fear that the Ropinirole (over time) will begin to worsen the Restless Leg Syndrome (augmentation) and she'll be caught up in a vicious cycle.

Medications she presently takes are: Metoprolol, Pravastatin, Amlodipine, Paroxetine, Levothyroxin, Dicyclomine, Potassium, Pantoprazole, Furosamide, Clopidogrel, Nitrofurantoin, Ropinirole, and for her macular degeneration, Lumigan and Timolol eye drops.

Barbara F.

Medical Reply

As you already know, opioids are extremely effective for treating RLS. However, we always have extra concern when using opioids in senior patients as it may decrease mental function, alertness and possibly even predispose to falls.

Another issue is that RLS is typically worse in the evening so often we can get by with lower doses of opioids targeted at the later parts of the day when needed.

I agree that the ropinirole may eventually cause worsening of RLS symptoms (called augmentation) but this can take months to often years which may be less of an issue in your 91 year old mother.

An alternative therapy would be to add Horizant, Lyrica or gabapentin which are often very effective when added to opioid therapy to help reduce the dose of opioid needed to treat RLS.

Ferritin and iron levels should be monitored as if they are low, supplemental iron may be quite helpful.


Sent: Tuesday, March 22, 2016 6:52 PM
Subject: Amazing response with Contrave (Naltrexone + Bupropion)

Last year I struggled for 5 months to get off Mirapex and was having a very difficult time finding a replacement drug. You advised that I might need to go on an opioid, but my neurologist was not wanting to go there. So I settled into using 0.75 mg of Mirapex with 50 mg of Lorazepam and 300 mg of Gabapentin for 5 times a week and 1 mg of Mirapex and 300 m of Gabapentin for the other 2 nights. I didn't like it because it was too close to my dose of 1 mg of Mirapex that caused my sexual impulse control issue for 12 years. And I wasn't sleeping that well and I still had augmentation during the daytime.

Then something totally unexpected happened. I was diagnosed with arthritis in one knee in November and my internist put me on Contrave to loose weight. First I noticed that my impulse control issue went way down; perhaps is gone. I was thrilled and attributed that to the naltrexone, which addicts use to keep off alcohol or drugs. And then I discovered that I didn't need to use as much Mirapex. I started decreasing the dose and am now well treated on 0.5 mg of Mirapex and 300 mg of gabapentin. I sleep well and have no augmentation during the daytime. I even experimented with a dose of 0.25 mg of Mirapex and 300 mg of Gabapentin and while I did not experience the RLS sensations in my lower legs and arms, I didn't sleep that well; my mind was too alert. I even tried no Mirapex one night and this time I experienced the RLS sensations.

I don't know why this has happened. Neither my neurologist, my psychiatrist/neurologist, my therapist, my internist or my pharmacist can explain why this happened. It is not the Bupropion alone because I was already taking that antidepressant when I went on Contrave. So it has to be the Naltrexone. Or perhaps there is an interaction between Bupropion and Naltrexone that explains it.

Perhaps you can explain this. I think that this would be a very good avenue for RLS research. First it could be good for patients like me that experience impulse control issues on Mirapex. Second, it could be good for patients who are augmenting on Mirapex. I urge you to look into this. It has been a godsend for me and I hope that will work for others.

Richard B.
Haiku, Hawaii

Medical Reply

It is very hard to explain why the naltrexone is helping your RLS since it is an opioid antagonist and thus does the exact opposite of what opioids do to help RLS. We have some reports of Suboxone (buprenorphine/naloxone) helping RLS patients and it has naloxone which is quite similar to naltrexone. However, Suboxone also contain buprenorphine which has partial opioid actions.

But even with Suboxone, several patients have noted no benefit for their RLS so your improvement is quite difficult to explain.

Patients who have impulse control problems with Mirapex should not continue the Mirapex (even if there is medication that will treat it) but rather go off the medication (especially since there are many other reasons for not using dopamine agonists such as augmentation) and use alternative medication to treat their RLS.

A Reply from Richard


Sent: Wednesday, March 23, 2016 2:28 PM
Subject: Re: Amazing response with Contrave (Naltrexone + Bupropion)

I tried most alternative medicines and did not get acceptable results. And my neurologist does not want to prescribe an opiate. So I see no choice but to keep on with what I am doing. When I get to my target weight I will experiment with naltrexone without the bupropion and with lower dosage of naltrexone. As long as this keeps working as it now is, I am very content to keep on with the lower dose of Mirapex, because I currently experience no impulse control issue and no augmentation.

Richard B.


Sent: Saturday, March 26, 2016 2:20 PM
Subject: RLS & Tramadol?

I have had RLS for at least 15 years and am now 63. I noticed in the last two years that my RLS is getting worse. Now I have RLS almost 24 hrs. a day. I have been taking Tramadol 50 mg (2 pills) to help alleviate the symptoms but noticed that it has not been working. One problem I have is that the doctors are so ill informed on RLS. I have to fight with my doctor to get the medicine I need for my condition. What can be done to educate the medical community to this life changing disease? Any ideas would help.

I have tried gabapentin drugs but they donít work for me. This is a real strange disease.

William T.

Medical Reply

Unfortunately, you are correct in that most physicians (even specialists) do not know much about RLS and especially treating difficult cases.

There are two possibilities as to why the tramadol is not helping your RLS.

The first is that after 15 years, your RLS might be getting worse. You need to check serum ferritin levels and make sure that you are not taking any medication that might worsen RLS.

The second is that you might be suffering from augmentation which is a worsening of RLS that typically occurs due to taking dopamine drugs like Mirapex or Requip. However, tramadol can also cause this problem and the treatment would then be to get off the tramadol.

Since regular gabapentin did not help, then you might consider Horizant or Lyrica. If those drugs don't help then you may need opioids such as oxycodone or methadone.


Sent: Friday, April 01, 2016 10:38 PM
Subject: Rotigotine for RLS

You have very kindly helped me in the past. My neurologist has put me on Neupro patches. I did think my urge to get up reduced but leg pain continued. I wanted to believe the patch was working and rang the neurologist to ask her whether, if it was, the leg pain should have reduced. She did not want me to go up to 2 mg patches because of augmentation fears. She suggested I try Gabapentin to support the Neupro. I am now on 900mg. She said if the Neupro did not work I should wholly use Gabapentin titration get upwards.

My puzzle and question is what benefit should I get if the Neupro is working. Should it control or lessen pain. The 900mg Gabapentin wipes me out and I cannot keep my eyes open after 10 but I was awake at 4.30. I imagine more than 900 would make the somnolence worse. The neurologist says that if the Gabapentin either doesn't work or can't be tolerated then it is levodopa with all the augmentation possibilities. I do want to stick with Neupro if I can but I realize it is a bit pointless if it is not really doing anything.

Martin C.

Medical Reply

There are a few issues in your current treatment. Although it is quite reasonable to strive for the lowest dose of Neupro to prevent augmentation, it is also reasonable to go up to 3 mg/day if needed to control RLS symptoms. However, you should not use Sinemet (levodopa) on a daily basis since the risk of augmentation is incredibly high (over 90% will get augmentation).

You may do better with a higher dose of Neupro and a lower dose of gabapentin taken in the evening only so that daytime sedation does not become an issue.

If further treatment is necessary, opioids may be added for further relief (and should be extremely successful and safe if monitored correctly).

A Reply from Martin

Sent: Wednesday, July 20, 2016 2:41 AM
Subject: Ongoing treatment

I saw my Neurologist who is a Professor of Movement Disorders yesterday. When I saw him in August last year he alluded to the possibility that the RLS symptoms I had were the result of stress accumulated over time. Yesterday he reaffirmed this view. He said that my brain scan and MRI were clear. Also the fact that I still had considerable pain despite 1800mg of Gabapentin and 200 mg of Tramadol made him think that stress was the cause.

He suggested that whilst my body showed the symptoms of RLS the fact of the severe pain made him think that accumulated stress was the cause. He said that of 500 patients he had on his books none complained of severe pain! Is that your experience? He has arranged for me to have a nerve conduction test and EMG and I will see him again in 4 months. I find it interesting that Dr Susanne OíSullivan who wrote ďItís all in the headĒ is at the same hospital.

 If we extend the hypothesis that if it canít be clinically proven then it must all be in the head then many (all?) of the RLS sufferers do not have RLS at all but have functional movement disorders caused by emotional disturbance. By coincidence last Thursday I had my worst night with RLS. My legs would not stop moving in bed and I could only stop the agitation by walking around. Most nights I sleep well aided by 1mg of clonazepam when I go to bed. I hope this slightly disjointed rambling makes sense!

Martin C.

Medical Reply

The difficulty is that RLS is a diagnosis that is completely based upon the history (the patientís description of what he or she feels) and thus is completely subjective without objective findings to support the diagnosis. This makes it difficult for many physicians to establish the diagnosis. Your doctor is looking for ďhardĒ evidence of a disease but for RLS, none of your scheduled tests will be helpful in any way.

Certainly, emotional stress/anxiety can heighten RLS symptoms but anxiety cannot cause RLS symptoms (just like anxiety may worsen back pain but does not cause it). If the RLS were treated effectively, the stress/anxiety would not be an issue. Furthermore, a lot of your anxiety may be stemming from untreated RLS!

Pain is a significant symptom in at least 20% of RLS patients (several studies confirm this) and a majority of patients describe their RLS symptoms as painful. Your doctor may have seen a lot of RLS patients but he may not be asking the right questions. In addition, you are likely not absorbing the high doses of gabapentin so the tramadol may not be able to provide relief for your severe RLS symptoms.


Sent: Monday, April 04, 2016 7:20 PM
Subject: How do I know if I have restless leg syndrome?

I am 70 years old and have been treated by two different neurologists for restless leg syndrome. My first Doctor started me on 100 mg of gabapentin 3 times a day. Eventually he increased the dosage to 5400 mg a day but I still did not get relief. I switched to a second neurologist seeking a better solution. My second doctor started me on .5 mg ropinerole but didn't help at all. I am now on 4 mg a day along with 2 tablets of carbidopa/levodopa and .5 mg of Clonazepam at bedtime. My symptoms still have not improved, in fact, they are probably worse, especially during the day. I am not convinced the diagnosis is even right.

My symptoms are very atypical for RLS. I have never had the urge to move my legs or feet. I feel continuous movement inside my left foot. However the feelings often move up my ankle and into the calf. It feels as if someone is pulling and pushing my foot. Sometimes I experience sharp stabbing pains. I also have some of the same feelings in my right foot, also constant. I experience these sensations non-stop, day and night, whether I'm sitting, standing or lying down. The only times they don't bother me is when I am walking or dancing.

Recently i have begun to experience pain in my left arm, however it is not constant. I find it extremely difficult to concentrate when reading, attending concerts, church services or just about anything. The medicines do not make me drowsy so I have a difficult time getting to sleep at night. When I finally get to sleep but then wake up to go to the bathroom I have to start all over again. I am going crazy!

Without the urge to move my legs, is it possible that it is not RLS? What could it be? I need help.

Yvonne L.

Medical Reply

It is typically very difficult to diagnose RLS without the urge to move your legs when at rest. If there is a separate discomfort in your legs caused by RLS (which usually would be in addition to the urge to move your legs), then you would feel some urge to move your legs in order to relieve the discomfort. The positive part of your symptoms that are similar to RLS is that your symptoms occur at rest and seem to improve with movement.

Furthermore, over 90% of RLS patients get initial relief (for a few weeks or months) with dopamine drugs like carbidopa/levodopa or ropinirole (especially at a quite high dose of 4 mg).

The lack of response to gabapentin (even at a high dose) or clonazepam does not add very much.

To give you further confirmation about whether you have RLS would require a face to face consultation.


Date: March 28, 2016 at 11:50:18 PM PDT
Subject: Weight gain.

I developed RLS approximately 30 years ago. My doctor started me on clonazepam, but after many years, it wasn't working well, and I was weaned off of it. Now, at age 60, I am taking 1mg ropinirole and 600 mg gabapentin at bedtime, and .5mg Ropinirole as needed during the evening. Unfortunately, since I've been on the gabapentin, my weight has been steadily climbing, even though I have not changed my diet or exercise routines.

Is there something else that would work as well on my medium to severe RLS without causing weight gain?

Sandy W.

Medical Reply

Gabapentin is known to cause weight gain. Typically, the weight gain is modest (5 pounds for most) but some patients can experience a significant weight gain (for some reason, women more than men).

Increasing your ropinirole also increases the risk of augmentation (a worsening of RLS from taking a dopamine drug like ropinirole) so that would not be a good idea. The other medications in the gabapentin class (Lyrica, Horizant) also have similar weight gain issues) so you would have to consider a different class of medication. The next choice is to add an opioid. Typically, we try to start with the least potent opioids like tramadol and change to higher potency ones (like oxycodone or methadone) if needed.


Sent: Monday, April 25, 2016 1:12 PM
Subject: RLS & Parkinson's Disease (PD)

I'm a 75 year-old female and have been on Requip for 12 years for RLS. I have been experiencing augmentation with the Requip for some time now, and am currently taking 7mg a day to control the RLS (a very high dose for RLS from what I've been told). To complicate matters, I was also recently diagnosed with Parkinson's disease.

Last week, my neurologist prescribed Levodopa to take along with the Requip. I, however, am nervous that this combination will make me become even more reliant on medication than I already am. Do you suggest that I get off the Requip, under supervision, and allow the Levodopa to take care of both the Parkinson's and the RLS, or do you think I should taper down the Requip and take it in conjunction with the Levodopa? And how about the Requip augmentation? Does it really matter if I am experiencing augmentation when I already have Parkinson's, or am I setting myself up for disaster down the line?

Elissar R.

Medical Reply

For RLS without PD, taking high doses of Requip (over 1-4 mg/day) and adding Sinemet (levodopa) would lead to augmentation very quickly.

However, this does not seem to be the case for most PD patients in that they can take high doses of both Requip and Sinemet on a daily basis and do not get issues with augmentation. Part of the reason may be that the doses of dopamine drugs to treat PD are so high (and given around the clock) that they might mask augmentation.

However, since you may need the dopamine drugs to treat your PD, you may have to take additional medication (like Horizant) to help control your RLS if needed.


Sent: Tuesday, April 26, 2016 12:57 PM
Subject: Levodopa (Sinemet) for RLS?

I was wondering why levodopa isn't used to treat RLS.

Corey G.

Medical Reply

When taken on a daily basis, Sinemet causes augmentation (a worsening of RLS from taking a dopamine drug) in almost all the RLS patients who take it. However, this drug can be used intermittently (up to 3 times per week) very safely and effectively.


Sent: Wednesday, April 27, 2016 5:14 AM
Subject: Questions about treating my RLS

I am searching for the RLS medicine that is right for me. Over a period of time, including augmentation with Requip and Mirapex, my doctor and I have tried Requip, Neurontin, Lyrica, Mirapex, Norco (to get through augmentation), Clonazepam, Serax, Tramadol, Horizant, and Codeine. Right now I am on Horizant 600 mg and Codeine 30 mg. About half of the time this works very well, and other times I wake up with leg movements sometime in the night. My biggest problem is the side effects of Horizant: dull thinking and memory, poor mental stamina, or what I call "brain fog". I had the same problem with Neurontin and Lyrica. Sedatives made me sleepy in the daytime. Norco at higher doses caused wakefulness.

I really want to get off of Horizant because it is affecting my ability to function well in the evening and daytime. Can you explain the "brain fog" that I am experiencing?

Do opioids commonly cause wakefulness? My pharmacist said this has happened to her as well. Do you think all the drugs in this family would have the same effect, or is it worth trying different ones to see if they all cause wakefulness?

What should I expect as a "normal" night of sleep? Is it possible to find a drug that will get me through the night without the daytime side effects? Sometimes I wake up, not because my legs woke me up, but just the awareness that my legs are not restful. So it seems that my brain is "talking" to my legs, although the drug is possibly keeping my legs at rest. This is just as bad as if my legs were moving.

Jeanne W.

Medical Reply

Although most patients who have a sleep related side effect from opioids complain of increased sleepiness/sedation, a significant percentage of patients are similar to you and find that it causes insomnia. This will likely be common for many of the opioids but most patients can find a few that will not cause this problem. If your current codeine does not cause insomnia (that may be at least one that will work for you), then you can increase the dose to 60 mg as this drug is not as potent as the other opioids. If the codeine is not sufficient, then there is a good chance that another opioid may not cause insomnia while helping your RLS.

ďBrain fogĒ or sedation is not too uncommon with Horizant and gabapentin/Lyrica like drugs. You might consider going to the lower dose of 300 mg (donít cut your current slow release in half) and see if that works better.

You should sleep much better once your RLS is more fully controlled.


Sent: Friday, April 29, 2016 4:05 AM
Subject: RLS and low-normal ferritin level

I need your support. I'm a 50 year old female that's been suffering from RLS since 1998 when I was pregnant with our first child. I've taken all of the typical "line of first defense" medications and am now using Neupro patches. They've been effective but my dosage over the last few years has increased from 1mg/24 hrs to 4mg/24 hrs.

My neurologist tested my iron level a few years ago (not ferritin just "regular" iron level) and it was normal. In spite of the patches I still suffer from mild to moderate symptoms around the time of my period which leads me to the conclusion that my iron level is somehow involved. I asked my GP to test my ferritin level at my recent check-up. The results state my ferritin level is at 46 which is in the normal range...for a non-RLS patient. I've seen on various websites (including John's Hopkins) that taking 200mg/day of ferrous sulfate along with vitamin C has been beneficial for many RLS patients, but want to make sure that's still the case.

However I also take .15 mg of levothyroxine each day for hypothyroidism. This medication is also to be taken on an empty stomach and cannot be taken at the same time as an iron supplement. What do you suggest I do in this case?

Sue T.

Medical Reply

There are several issues with your treatment.

As far as iron therapy, there is a possibility that taking iron orally may be helpful. We typically recommend taking up to 65 mg of elemental iron (usually 325 mg of total iron compound) up the 3 times per day (on an empty stomach with Vitamin C as you have mentioned). However, the lower the initial ferritin (especially below 15-25), the better the chances that oral iron will be helpful. Most people absorb less and less iron as the serum ferritin level increases (it may go below 2% for serum ferritin levels of greater than 50-60). In those cases, intravenous infusions of iron can be very helpful. You could take your thyroid medication just before going to bed which should be long enough from taking your iron tablets.

The worsening of your RLS corresponding to your menstrual cycle likely has more to do with hormones than iron (there is little changes in iron levels/stores with menstruation as level do not get better very quickly after dropping).

Your dose of Neupro is now outside the FDA approved range and the range that I suggest (which is a maximum of 3 mg/day). Increasing the dose above 3 mg/day causes a very increased risk of getting augmentation (which you may already be experiencing).

You may need to see a real RLS specialist since you are not fully controlled on the Neupro. There are a few options which include adding Horizant and trying to decrease the Neupro (which may be very hard to do). You may also want to discuss getting completely off the Neupro and changing to opioid therapy.


Sent: Saturday, April 30, 2016 10:07 AM
Subject: So frustrated with my doctor

I stumbled across your website awhile ago in search of answers to my leg and foot pain and found it so informative. I actually am in southern California so its potentially possible for me to attend a meeting. But I am so frustrated with my consult with the Neurologist to have my symptoms diagnosed as RLS. He quickly dismissed me and told me that I do not have RLS because I do not have problems falling asleep, rather I fall asleep fine without leg pain and later wake up in the middle of the night with leg pain. That combined with the fact I do not walk around in the middle of the night was enough to claim I do not have RLS. Are those 2 reasons alone enough to discount RLS? I already have had x-rays and an MRI as well as a full blood draw to rule out all the other possibilities. I even went to physical therapy for a month for stretching.

My main issues are waking up in the middle of the night for whatever reasons and then staying awake for 3 hours with my legs and feet throbbing. I also have recently started having daytime pain, mostly when at rest. I don't notice it as much when I am active. No amount of anti-inflammatory medications help with the pain (including prescription strength). I do have a small dose of tramadol prescribed and that does help. To be honest, the daytime pain is negatively effecting my life more than anything and is the reason I sought medical help.

I guess I am curious if you think it would be worth it for a 2nd opinion? I have Kaiser so it should be relatively easy to request a different specialist. I am just so frustrated that he so quickly dismissed the possibility. I am 38 years old and a female. Oh and my sister also experiences leg pain.

Lyssa M.

Medical Reply

Unfortunately, most neurologists do not know the fine points of RLS diagnosis and treatment. There are no real RLS experts in the Kaiser system that I know of (and that includes outside California). RLS does occur most typically at bedtime and prevents patients from falling asleep but I have many patients who experience RLS a few hours falling asleep at bedtime. It is also common to have daytime symptoms but they must only occur when at rest (and be relieved by movement such as walking) which seems to be what is occurring with you.

However, to diagnose RLS, you must have an almost irresistible urge to move your legs (or at least massage them) to get relief. Without this urge to move your legs (and get at least some relief with the movement), RLS cannot be diagnosed. If you donít have the urge to move your legs with the pain/discomfort, then you might have a neuropathy (also hard to diagnose).


Sent: Friday, May 13, 2016 9:18 AM
Subject: Quick question on Treatment information

First, Iíd like to thank you for your website. Iíve been suffering with a severe case of RLS which was diagnosed in 2003, and have gleaned a wealth of information from your site.

I was on there today searching out alternatives to my current medication, which is Norco. My doctor has referred me to a sleep specialist, and I suspect she wants someone else to tell me that I can no longer continue taking Norco, since the government is cracking down on opioid prescription-writing. Iím looking for an alternative before Iím cut off.

I did note that your chart, APPROXIMATE EQUIANALGESIC ORAL DOSE, has Vicodin and Norco listed at 30 mg. every 3-4 hours. Is this correct? Regular strength is 5 mg per tablet; that would be 6 pills!

Jayne M.
Canton, Michigan

Medical Reply

You are misunderstanding the purpose of the chart. The chart just allows you to compare different types of opioids so that if you need to change from one to another one, you can figure out equivalent doses.

The doses on the chart are clearly not recommended doses for treating RLS since they are derived from doses needed to treat chronic pain problems. For RLS, we always try to find the lowest dose that takes care of your RLS symptoms.

Furthermore, it is best not to use combination opioid products like Norco (as it has Tylenol in it) that contain products that do not help RLS and may cause side effects if taken long term without any benefit.

 

Sent: Friday, May 13, 2016 10:44 AM
Subject: RE: Quick question on Treatment information

Do you have a recommendation for an opioid product that is not a combination product? Iíve tried a number of different treatments over the years, and this seems to be the only one that quiets my legs.

Medical Marijuana is legal in Michigan. Is this an avenue I may want to pursue? The information on your page on this was encouraging, but sketchy.

The things that have not worked for me are: Klonopin, Sinemet, Requip, & Neurontin. Iíve also been prescribed Ambien and Lunesta, which did help me to sleep but did not stop my leg movements, causing my husband many, many sleepless nights. Iím not a candidate for Mirapex.

Jayne

Medical Reply

We typically use methadone or oxycodone. However, Dilaudid, Opana, Nucynta, MS Contin, levorphanol work equally well in given patients. You may find it very hard to get your physicians to prescribe these potent opioids even at low doses especially with the recent CDC recommendations against prescribing opioids (which do not apply to the majority of RLS patients who use opioids at low dose).

Marijuana is helpful for bedtime RLS as it works very quickly but does not last very long (a few hours at best). It must be inhaled (obviously not great for your lungs) or taken in a liquid under your tongue as these preparations get in quickly and result in high peak levels of the drug. Ingesting marijuana (edibles) may make you high but rarely provides RLS relief.


Sent: Saturday, May 14, 2016 7:07 AM
Subject: Quercetin for an  RLS patient?

I was prescribed some quercetin for allergy symptoms and I have tried it a few times and I seem to get much worse RLS from this natural antihistamine in the same way I get it from Benadryl and other OTC antihistamines. I am still checking by taking it for a day and then not taking it for a few days but it does seem to be the culprit. Have you ever heard of that? I looked online and didnít see anything like that

Kathy B.

Medical Reply

Quercetin belongs to a group of plant pigments called flavonoids that give many fruits, flowers, and vegetables their colors. It also has antihistamine properties but it does not block the histamine receptors as does Benadryl. Therefore, it is not clear why it would worsen your RLS. I have yet to hear of another RLS patient affected similarly by Quercetin.


Sent: Sunday, May 15, 2016 11:11 AM
Subject: Time to find an RLS treatment

I'm a 62 year old woman who has had RLS since I was a child, long before it had a name. I've only taken Ropinirole a couple of times when I needed to endure transatlantic flights. Recently I'm seeing more sleep disturbances than normal and feel it is time to address my RLS. However, every time I read the side effects, specifically augmentation, I get nervous about starting drug treatment. What is your recommended starting point? I'm in California, so if you recommend a cannabis tincture, what strain? I've read that is effective.

Kristen T.

Medical Reply

Actually, the name RLS predates your birth as the name was established in 1945 by Dr. Karl Ekbom.

I do agree that you want to stay away from Requip (ropinirole) and Mirapex (pramipexole) due to concerns with augmentation and other concerns. However, Horizant (or even gabapentin or Lyrica) is a very good alternative approach.

It is not clear which tincture of cannabis is best for RLS but it must be inhaled or taken under the tongue to provide relief.


Sent: Monday, May 16, 2016 5:41 PM
Subject: Question on Ropinirole Withdrawal

Due to all the side effects and no help from my doctor (who just kept telling me to increase the dosage) I decided to quit taking the medication. I had been taking 1 mg for a few years and then increased to 2 mg, in total I've been on the drug for 5 years now. Before the drug my RLS was manageable without any medication and I hope to get back to that again but I'm not sure if I'm still withdrawing or if these are my baseline symptoms.

I've tried to see sleep specialists and none of them have any answers or knowledge of this really. Some even tell me there's no such thing as withdrawal from Ropinirole. I tapered down from 2 mg to 1 mg for 3 days, then .5 mg and then stopped completely on May 4. Since then (it's been about 12 days) I have not been able to sleep at all. My doctor finally gave me Tramadol (50mg) and that let's me sleep in 20 minute increments but I still can't get much rest. Even 2 of the Tramadol doesn't allow me to sleep any longer than for 20 minutes at a time before my legs wake me up. I got so desperate that I took 3 of the pills last night and finally got some sleep. Is this normal?

Am I still withdrawing? How do I know when my symptoms are getting better or if this is my new baseline? So far when I stopped taking Ropinirole the daytime symptoms were gone within a few days, but since then nothing else has changed or improved. I haven't been able to find much information on the withdrawal process and I'm getting desperate and hopeless that this will never end for me.

JA

Medical Reply

You are correct that very few doctors (even the specialists who treat RLS) know very little about the augmentation (worsening of RLS from taking a dopamine drug like ropinirole) problems, how to treat it and what happens when you stop the dopamine agonist drug.

You have already noticed one of the first benefits of stopping ropinirole which is the decrease/disappearance of earlier onset/daytime RLS symptoms. Most typically, in 10-14 days, RLS symptoms tend to decrease back down to baseline (before you started on ropinirole). It can take longer and of course, in the past 5 years, other events can occur that may worsen your RLS (like decreased iron levels, new drugs that worsen RLS, increased stress/anxiety, etc.). If your evening symptoms are not much better by 3-4 week, they will likely not improve much after then.

Tramadol is usually not sufficient to treat the marked worsening of RLS symptoms (which typically prevents sleep) when withdrawing from dopamine drugs like ropinirole. We typically prescribe opioids like oxycodone or methadone (most non-RLS specialists will be quite unwilling to prescribe these drugs). Several of us experts have created a guide for physicians on how to treat augmentation which can be found below:

http://irlssg.org/augmentation/


Sent: Thursday, May 19, 2016 5:35 AM
Subject: RLS help

I have had RLS for the past 6-7 years but didn't know what it was until about 5 years ago. I have been on Requip, Sinemet, gabapentin, carbamazapine, and many others meds with no success. My symptoms are very severe and begin about 4 to 6pm each day. I was on Mirapex with great success however I maxed out on my dose and then had a very terrible side effect of compulsive gambling and uncontrolled sexual urges. I almost lost my marriage and encountered legal troubles as well. I never had a history of gambling and certainly no urges to be unfaithful prior to this medication. And am devastated by its effects.

I was weaned off of Mirapex and am now on Neupro patches from my neurologist. I use a 6mg patch that was titrated as it did not work at lower doses. I am still struggling with symptoms and have a terrible skin irritation from the patch which sometimes comes off and my symptoms get worse. My wife and I are at our wits end. I need to sleep and work but the terrible creepy crawly feeling is unbearable and I get no sleep. I live in Colorado where medical and recreational marijuana is legal and am wondering if I should just try it. Also I have never tried Lyrica and am curious about its side effects and efficacy for RLS.

I long for the cessation of my symptoms I had with Mirapex but cannot accept the consequences of taking it due to the side effects it produced in me. Do you have any suggestions on where to turn next? I'm not really comfortable with narcotics but would be open to Xanax or another related medication( Klonopin didn't seem to help). Should I be taking a combo of drugs as I have read many people in your blog do? I have always been on a solitary medication regimen. I would be very grateful for any insight you could provide.
 
Rob W.
Denver, CO

Medical Reply

You do not say how high a dose of Mirapex that you were taking, but I assume it was a relatively high dose since you currently need 6 mg of Neupro (we normally do not exceed the maximum FDA approved dose for RLS of 3 mg). As such, it may be very difficult to get off any dopamine agonist including Neupro.

Lyrica is a very reasonable drug but is typically not potent enough to treat the marked worsening of RLS when you stop the Neupro (which may last 10-14 days and you may not get any sleep). Lyrica may work better after 2 weeks but some patients are left with a more intense level of RLS which may require opioid therapy.

I understand your reluctance to take opioids but when prescribed properly, they are extremely safe and effective even in the very long term. Most patients in your situation can only get complete relief with the aid of opioids. To keep the dose of opioids as low as possible, they can be combined with drugs like Lyrica.

Xanax and other benzodiazepine (like Klonopin) do not help RLS symptoms but simply help patients get to sleep (as they would if you suffered from headaches or back pain). They should only be added if insomnia persists despite adequate treatment of RLS symptoms.


Sent: Tuesday, May 24, 2016 2:18 AM
Subject: Is this RLS or something else?

I am a 55 year old woman. I suffer from mild depression and Hashimoto's thyroiditis. For the past 20 years I've been taking SSRIs on and off (Zoloft, Prozac, and most recently generic Celexa -- only a small dose of 15 mg). Of course I also take Synthroid, but lately my thyroid is going a little crazy and I may possibly be swinging over to Graves disease. I've had to decrease my Synthroid by half in the past 6 months due to very "hyper" TSH! I am very sensitive to caffeine and stimulants, so I avoid them. I also cannot tolerate narcotics.

Over the past 5 years I have noticed that I get uncomfortable sensations in my lower legs late in the evening or when I'm lying in bed. Lately it has gotten much worse. It is an uncontrollable urge to move my legs. I feel it mostly in my calves, but sometimes I feel it in my entire body and need to wiggle around, pulse my muscles, or gently rock myself back and forth to ease the discomfort. It's as if there is a "build up of energy" that needs to be addressed. It's a very weird sensation. I know for a fact that I do have some periodic leg movements in my sleep (I have moderate sleep apnea and have used a CPAP for the past 6 years).

Does this sound like Restless Leg Syndrome to you? I have not seen a neurologist, but I'm thinking of seeking one out. Could either the Celexa or my thyroid problem cause this? I have read that Neurontin is often prescribed, but I really don't want to take any drug that may make my depression worse!

Also, could a deficiency or over-abundance of a vitamin or mineral cause this? For example, my B-12 is very high (it was deficient and then I started taking a B-12 supplement to correct it a few years ago).

Lynn in Northern California

Medical Reply

It does sound like you have RLS and most all the antidepressant drugs like Celexa, Prozac and Zoloft all tend to significantly worsen RLS.

Vitamins and minerals are not involved in RLS except for iron which is often low and in which case, iron supplementation can be quite beneficial.

There are many treatments available and the Neurontin/gabapentin class of drugs can cause depression but that occurs only in a small percentage of RLS patients.


Sent: Tuesday, May 24, 2016 12:30 PM
Subject: RLS symptoms worse after switching Mirapex to Requip?

I've had issues with RLS since I was a teenager, I'm 28 now, and my RLS is big time worsened by my antidepressant citalopram 30mg. I get the disturbing "my tendons are itchy, my muscles are hyper" sensations in my legs, arms, and my back.

I was just switched from Mirapex 0.5mg (which worked amazing with the exception of severe nausea) to Requip 0.5mg to see if the nausea side effects would be better. I tried it for the first time last night and it felt like I skipped medication all together.. is it typical for Requip to worsen RLS symptoms? or should I be on a different dosage?

I have not slept since last night and the little sleep I was able to get was from some relief I got from a hot bath.. I read on one of the threads of this forum that Requip is less potent than Mirapex, does that mean the dosage should have been adjusted by my doc accordingly?

Amanda D.

Medical Reply

You are correct in that Requip is much less potent than Mirapex. Typically, Mirapex is 2-4 times more potent so you would need 2-4 times the dose of Requip (1-2 mg) to equal your previous Mirapex dose. For nausea, you can take the medication with food but then you will need to take it earlier as taking it with food delays the onset of action by at least an hour.

There is really not need to change from Mirapex to Requip since they work quite similarly (at equally potent doses) and the issue was not that the Mirapex was not working but rather that the citalopram has worsened your RLS. I generally do not suggest increasing the Mirapex dose any further (I actually prefer to keep the Mirapex at a maximum of .25 mg due to the increased risk of augmentation with higher doses) so it might be better to consider adding another medication like Horizant.


Sent: Friday, May 27, 2016 5:06 PM
Subject: Advice requested for managing a 17 hour flight

I am currently taking one .25 Ropinirole tablet split in half at two hours and one hour before bed. I had augmented on .625 and worked back to the .25 dose about two years ago. I also take a 50mg Tramadol at bedtime and another upon my first waking up in the night. Each time I wake up I read (while standing and
stretching) for 1/2 to 1 hour and rub my legs vigorously. This allows me to get back to sleep.

If I sit too much in the evening I get symptoms. Every time I wake up naturally in the night I have symptoms that require staying up but if awakened by an alarm, phone call or loud thunder I don't have symptoms and can get back to sleep. Before taking Ropinirole I would get about three or four hours sleep each night with several long periods up pacing etc so I'm happy to get about seven hours now.

I also take 60mg of codeine before a long drive or a movie. This keeps my painful RLS symptoms away. My doctor prescribes 20 tablets every three months and I don't take all of them during the three months.

In September and October I will be taking a 17 hour 15 minute flight from Auckland to Dubai and return. I have a prescription for 7.5mg Zopiclone which I only use on long flights which prior to this have been a maximum of 13 hours. The Zopiclone seemed to work for about four hours.

Could you suggest a plan for taking the medications I have available for these long flights? How often could I take the codeine, when should I take the Ropinirole and should I take the Zopiclone or not?

Clare S.

Medical Reply

The best plan would be to take codeine or tramadol which tend to last about 4-6 hours. You could take only one of the drugs or even alternate if they work equally well (I suspect that it may take 2 tramadol tablets to equal one codeine 60 mg tablet for similar control of RLS). If you are traveling with some else, you could add the Zopiclone (you could get quite sleepy so it would be wise to have someone with you).

You could also take some ropinirole which last about 6-8 hours and may let you need less of the tramadol or codeine.


Sent: Saturday, June 04, 2016 2:19 PM
Subject: Gastric bypass and RLS

I am post surgical gastric bypass 6 years ago. About 4 months after my bypass I developed RLS. Its in my arms and hands too. I have been to my doctor and to endocrinology but I don't really get anywhere. Currently I take tramadol for back pain which does help with the symptoms but I have malabsorption issues. I have tried iron but upsets my stomach so bad.

My ferritin is currently 27. At this point I'm not sure if I am even absorbing the tramadol to the best extent. Have you heard of this after gastric bypass and any suggestions? My doctor doesn't seem to know what to do with me.

Tami R.
MN

Medical Reply

You will find that not many doctors know a lot about RLS.

Low iron levels can trigger/worsen RLS symptoms and your gastric bypass may be causing decreased iron absorption which leads to worsening RLS symptoms. Oral iron may be helpful but in cases such as yours, we strongly consider intravenous iron infusions which can dramatically increase the iron levels (we like to get the ferritin above 200) and improve RLS symptoms.

There are several medications available that can make RLS much better. You need to see a knowledgeable RLS doctor.


Sent: Monday, June 06, 2016 11:04 PM
Subject: Does Lyrica cause augmentation?

i have exacerbation of my RLS symptoms since six months ago after an abdominal surgery. The Neurontin I have been taking is no longer effective now. I just started Lyrica last week and like to know what is the right dosage for Lyrica and how long it takes to be effective.

I am also very concerned about the augmentation it might cause. I read somewhere that there is 1.7% rate of augmentation per 52 weeks. I would appreciate if you can enlighten me as how to avoid the augmentation caused by Lyrica. Do I have to take Lyrica holidays or start taking low dosage.

Chen H.

Medical Reply

There is no augmentation with Lyrica or Neurontin. The 1.7% augmentation is due to natural worsening of RLS and would be similar to a control group on no medication.

The correct dose of Lyrica is the lowest dose that relieves RLS symptoms. I typically start patients on Lyrica at 50 or 75 mg (taken about 1-2 hours before symptoms typically occur) and then increase that dose every 5-7 days until symptoms are controlled or side effects limit any further increases. The maximum dose is typically 300 mg although we sometimes go as high as 450 mg for a single evening dose.

There is no need for drug holidays with Lyrica.


Sent: Tuesday, June 07, 2016 7:08 PM
Subject: Restless Leg Syndrome in pregnancy

I have suffered with Restless Leg Syndrome on and off since being a teenager, I am now in my 40s. During my first pregnancy, 4 years ago, the Restless Leg Syndrome became much worse and after having my baby, I was put on Ropinirole as the Restless Leg Syndrome only continued to worsen. I have been taking 2 mg nightly which has 90% of time been effective.

I have recently discovered that I am pregnant again and have been told I MUST stop taking the Ropinirole. My doctor has been great and is trying to find an alternative because as it stands, there doesn't seem to be one. I have read that withdrawal form Dopamine agonists can result in initial, severe increase in symptoms for a short period of time but do not know if this is true.

Unfortunately, without the Ropinirole, I am unable to sleep at all and am now facing the prospect of little to no sleep for the duration of the pregnancy. To top it all, I suffer from Myalgic Encephalopathy which means that my body doesn't recognize sleep as being refreshing and fulfilling at the best of times. I am sitting here at 2:30 in the morning typing this because I can not sleep and I am petrified that there is nothing I can do.

I have tried all kinds of natural remedies and none work - I don't have pain with the Restless Leg Syndrome just the uncontrollable leg thrusts. I am really struggling and becoming more and more desperate as I can not continue like this for the remainder of the pregnancy.

Sarah VS.
UK

Medical Reply

There is help for pregnant RLS patients. You will have to stop the ropinirole and you are correct that it will cause a marked worsening of RLS for about 1-2 weeks (sometimes much longer).

The 2 drugs of choice are gabapentin and clonazepam. Opioids may be used if necessary and they do treat the withdrawal from dopamine agonists like ropinirole very well. However, you will have problems getting a prescription for any opioids in the UK.


Sent: Thursday, June 09, 2016 10:22 AM
Subject: Help with RLS

I have been taking Klonopin for over a decade for RLS, and it works great for me. However, my doctor has decided that I should not take Klonopin anymore because it increases the risk of dementia and can cause increased falls in the elderly (but I am only 46). I have been weaning myself off of the Klonopin for several weeks now. I don't mind giving up the Klonopin, but they can't seem to find ANYTHING to calm my RLS.

She gave me Clonidine, which made me feel like I'm in a haze all day and it also made me weak and dizzy--very dizzy. I almost fainted when I was at the optometrist two days ago, and I have lost my balance and fallen 3-4 times in the night when I get up to pee. Then she tells me that Clonidine affects low blood pressure--which I have--only she didn't bother to ask me about it, even though she take my blood pressure every time I go in!

Now she is giving me Trazodone, but it doesn't seem to be prescribed for RLS? I take Lyrica for Fibromyalgia, Ropinirole for RLS (but it's not effective enough to let me sleep), and 10 mg of Viibryd. I have already tried every natural thing I can do (Calcium, Magnesium, Valerian Root, etc.) so those things are out for me. Do you have ANY suggestions of what to take for a desperate severely RLS person?

Judy P.

Medical Reply

Klonopin is not an RLS drug. Its benefit for RLS is through its sedating effect (sleeping pill) which just helps RLS patients fall asleep (and would be similar to helping someone with back pain, headache or other unrelated discomforting problem fall asleep). Since it has a 40 hour half-life (and thus sticks around for over a day), sedation (which you may not appreciate) is very common so shorter sleeping medications would be much better if a sleeping pill is really needed.

Clonidine is a blood pressure pill that does not help RLS (one or two very old case reports of benefit in the literature but RLS experts do not use this drug).

You do not say what dose of ropinirole you are taking but the lack of effect may be due to an insufficient dose. However, ropinirole often causes augmentation (a worsening of RLS from taking that drug) that can make your RLS very severe.

Lyrica often is very helpful for RLS but may need to be taken at high doses (like 300 mg and you do not indicate your current dose). Viibryd tends to make RLS worse (there is an RLS Medical Alert card available on our website that you can download with information on drugs to avoid and alternatives).

If these drugs fail, then opioids are the next step that usually helps most RLS patient especially the severe ones. You may have to see an RLS expert (very good idea anyway although not too many of us around) to get opioids and have them prescribed properly.


Sent: Tuesday, June 14, 2016 11:09 PM
Subject: RLS genetic questions

Recently, in an attempt to research my ancestry, I submitted a DNA sample to 23andme. One of the reports from the sequencing stated that I received two variants of marker rs3923809 on gene BTBD9 from both of my parents. According to the report I am likely to have more than 10 night disturbances. This confirms my experience.

Does this information provide neurologists any additional information that can be used to diagnose the severity of RLS or for determining treatment options? (FYI I've been on Tramadol and Horizant for a while now and am quite satisfied with these meds).

My background is not in medicine or biology so lots of this does not make sense.

Nick A.

Medical Reply

The gene variant BTBD9 is one of the several genes that have been associated with RLS and PLMS. Having one of these genes simply puts you at higher genetic risk of having RLS/PLMS. Since you already have RLS, there is no relevant information from knowing you have this gene variant since you are already suffering from RLS due to this increased risk. Just as with genes associated with cancers such as breast cancer, not everyone with the gene variants get the disease. There is no correlation with the BTBD9 gene and the severity of RLS or its treatment.


Sent: Sunday, June 19, 2016 7:34 AM
Subject: Trazodone for insomnia?

For weeks know I have been taken tramadol & at night 1 trazodone prescribed by my GP because I was not sleeping. Well these last few days, four to be prťcised the usual dose has not worked for me, I take 50 mg tramadol and 50 mg of trazodone at night. I have done this for weeks know, but like I have said previously for some unknown reason this dose as stopped working. I have been waking up in the middle of the night with severe RLS.

Friday night I took an extra tramadol but all this did was the following day I was like a zombie., I experimented on the Saturday night I took an extra trazodone, (my usual dose at night 50mg tramadol + 50 mg trazodone). On the Sunday afternoon I had to go back to bed. I was so tired & I slept all afternoon (I'm sure it was the trazodone).

Can you please explain what the cause of this may be (I have just weaned myself of dopamine drugs)?

Susan T.

Medical Reply

Trazodone is a very sedating drug (which is why it is used to help patients sleep even though the sedation is an unwanted side effect). However, it also has a very long duration of action so if you take more, it will most likely hang around the next day. You are likely becoming somewhat tolerant to the sedative effects at bedtime and if you wake up in the middle of night, the increased sedation may help worsen the RLS. I typically donít like to prescribe trazodone due to these issues.


Sent: Tuesday, June 21, 2016 7:14 AM
Subject: Ongoing treatment

You have very kindly helped me a couple of times before. Having now been unable to tolerate pramipexole, ropinirole and also the rotigotine patches I am now on 1800mg of gabapentin and 200mg of tramulief. I also take 1 mg of clonazepam. These are not working very well as I still get sometimes awful and usually just present general leg pain. When the urge to get up becomes overwhelming, oddly about the same time each evening, 10 or 15 minutes on my exercise bike helps.

I find walking at the end of the day hard and also in the mornings. I am now getting myoclonic jerking (prolonged spasming unlike night twitches) as I try to sleep and now convulsions when I wake. My GP thinks the gabapentin is the cause and in a phone call she asked me to start reducing this at 300mg every three days. She hasnít suggested an alternative. Is Targinact a worthwhile possibility? I canít see much point in trying levodopa as I have mentioned before.

I have carefully read your ďClinical Management of RLS ď which in an ideal world should be required reading for General Practitioners and am thinking I am suffering from refractory RLS. I am seeing my neurologist on 19th July but I would very much value your comments

Martin C.

Medical Reply

The first issue is that most people do not absorb gabapentin very well. When individual doses exceed 300-600 mg, taking more typically gets very little extra gabapentin into the body. Therefore, you may think that you are on a high dose (as will your doctor) but you may have blood levels of the drug only slightly higher than lower doses (and thus not much greater of an effect). Lyrica is a much better choice and is well absorbed so that the more you take the more gets into the body (therefore better treatment of RLS symptoms with higher doses but also a greater chance of side effects).

Your jerks and convulsions may just be RLS/PLM not controlled with your current medications. I doubt that decreasing the gabapentin will be helpful.

Tramulief (tramadol extended release) works well for RLS but I usually prefer shorter acting forms of tramadol so that the dose can be adjusted more accurately to the severity of symptoms at different times of the day. Targinet (called Targin in the USA Ė oxycodone slow release with naloxone) has been studied for RLS in Europe and demonstrated some success. It is more potent than tramadol but just as with tramadol, I prefer the short acting version (oxycodone) which can be adjusted more readily. However, it may be very hard to get these potent opioids prescribed in the UK.

I also do not like the clonazepam with its 40 hour half-life. If sleeping pills are needed (it does not treat RLS in any way), then a shorter acting one such as zopiclone or alprazolam is generally preferred.


Sent: Wednesday, June 22, 2016 1:16 PM
Subject: Pramipexole withdrawal and sleep

I am withdrawing from pramipexole (.125 mg once daily) due to augmentation. My doctor has me taking 300 mg of gabapentin to make the withdrawal bearable. I can't take any more than that as it makes me unsteady and really doesn't help with the RLS. I am Thanks on day 6 of withdrawal and have had very little sleep. Can you recommend some way to to sleep?

Kathy C.

Medical Reply

Unfortunately, gabapentin is not completely up to the task of treating withdrawal from pramipexole RLS symptoms. You could speak to your doctor about increasing the dose of gabapentin up to 600 mg (or even 900 mg) although the higher the dose, the less of the increased dose gets absorbed. That might help reduce (but not even close to eliminate) the increased RLS symptoms from withdrawal of pramipexole.

The good news is that the RLS should improve after 10-14 days at which time the gabapentin may be sufficient to control your RLS symptoms. We often give opioids (oxycodone for example) which markedly helps the transition off pramipexole.

You could also add sleeping pills such as Ambien for temporary relief of your insomnia.


Sent: Wednesday, June 22, 2016 3:13 PM
Subject: Alternative to pramipexole

I hope you can offer me some advice. My 78 year old mother has been taking pramipexole for restless leg which she has suffered from for a number of years now and suffers terrible hallucinations side effects.

They are extremely vivid and almost nightly and now include sleepwalking. I know she finds these frightening and disturbing but her doctor has said any other medications are likely to have the same side effects. We live in England and I have tried researching but find it all very confusing. The medication does not even seem to help the restless legs that much. Can you of any advice? I know she takes other medications for blood pressure I wonder if these could be the problem? She has agreed to go back to the doctors but I don't hold out a lot of faith and she does not like to make a fuss but this is effecting her greatly.

Becky P.

Medical Reply

Unfortunately, pramipexole is known to cause hallucinations. It is possible that her blood pressure medications may be involved but the odds very strongly favor pramipexole as the culprit.

With time, pramipexole tends to worsen RLS (called augmentation) which is why many experts (me included) no longer like to prescribe the drug nor consider it one of the drugs of choice for treating RLS. However, stopping pramipexole is quite difficult as it results in a marked increase in RLS symptoms for at least 10-14 days.

The problem with hallucinations may be somewhat dose related. A solution might be to add gabapentin (start with 100 mg and increase slowly to 300 or 600 mg as tolerated or necessary) while trying to reduce the dose of pramipexole. Sometimes, even a small decrease in the dose may improve the situation with those unwanted side effects. However, with any reduction of pramipexole there will be an very likely increase in RLS symptoms which hopefully may be covered by gabapentin.


Sent: Saturday, July 02, 2016 9:25 AM
Subject: Dairy!

I have found that if I stay away from dairy and all forms of artificial sweeteners, my RLS is much better! Also Zantac, Alka Seltzer, Benadryl and just so many drugs can cause my legs to go crazy! I have to research everything before I take it!

I also have found that sleeping on my stomach with my feet sticking out at the bottom of my mattress helps a lot!

Kathy L.

Medical Reply

Some other RLS patients have found similar experiences with regard to dairy and artificial sweeteners but most RLS sufferers do not have problems with these substances.


Sent: Tuesday, July 05, 2016 1:54 AM
Subject: Withdrawal from ropinirole

I am currently withdrawing from Ropinirole and thought I had been successful. I took my last tablet a week ago - 0.5 milligram and since then have been taking 2 tramadol tablets on an evening. I didn't realize how helpful they had been until I ran out last night.

How long before I notice a benefit from the withdrawal (last night it was worse than ever - it starts late afternoon and doesn't stop. Last night it was even in my arms. I couldn't lay down at all and have had no sleep).

Do I need to continue with the Tramadol and if so how long for? Will I ever revert back to how it was before I started the Ropinirole? I started feeling very positive about taking the steps to come off because of augmentation but now feel more desperate than ever.

Pam W.

Medical Reply

The augmentation process causes an extreme worsening of RLS for 10-14 days after stopping a dopamine agonist like ropinirole. Therefore, you have stopped the tramadol a little early. Most patients will find a marked improvement in their RLS after about 2 weeks off the ropinirole but you will still need medication to treat your RLS even if it goes totally back to pre-ropinirole levels (not everyone goes completely back to pre-ropinirole levels).

You will either have to continue tramadol or consider other drugs like Horizant, gabapentin or Lyrica.

A Reply from Pam

Sent: Wednesday, August 10, 2016 7:02 AM
Subject: Re: Withdrawal from ropinirole

I can now say I have successfully withdrawn from both the Ropinirole and the Tramadol (that I used to help me come off the Ropinirole). I actually stayed on the Tramadol for a month, perhaps too long, as withdrawing from that was equally bad. Although I found 100mg of Tramadol at night very helpful I read that it also causes augmentation and I donít want to go through that again. So I am now drug free and ready for my neurology appointment in the autumn.

However having spoken to a fellow sufferer on the RLS.UK website she has informed me that the specialist in Sheffield Neurology Department is ignorant of augmentation and current recommended treatment for this condition. She ended up with a prescription suggested by yourself that she has found successful for several years. So I would like to be prepared.

I have suffered from RLS all my life but it became much worse during and after my menopause. I have it every day, usually just in my legs and am up every night, often for hours at a time. I also suffer from insomnia. I do not get any pain. I have no other medical conditions and am otherwise in good health and active and average weight for my height and age.

Having suffered with augmentation on 1mg and then 2mg of Ropinirole I am not sure which drug I should try next or am I better with a combination? Do you have any advice? I have looked at all the ones you listed but donít really know where to start.

Pam W.

Medical Reply

My suggestions as to the next drugs to try would be Lyrica (pregabalin) or gabapentin. Lyrica is much preferred as it has much better and more predictable absorption (but could be more expensive). I typically start my patients at 50 or 75 mg, 1-3 hours before bedtime and increase by my starting dose every 5-7 days to a maximum of 300 mg. If necessary and if sedation does not occur, an additional (typically smaller dose) may be added earlier in the day.

You could still use tramadol when needed. This drug can cause augmentation but likely less commonly than ropinirole. However, if you take the tramadol intermittently (maximum of 3-4 days per week), augmentation canít happen.


Sent: Friday, July 08, 2016 9:59 AM
Subject: RLS Question

I've had RLS for 18 years. Started with Klonopin, when to Mirapex. Currently on Requip ER 4mg, Horizant 600mg, Temazepam 30mg.

I just switched to the Horizant from 2400mg of Gabapentin as my RLS symptoms were getting worse. I feel like the Horizant is less helpful as I have more night time awakenings.

Some of the online RLS groups are telling me that RLS experts say the current max recommended does for RLS for Requip is 2mg, even for the ER version. IS this true and is it documented somewhere online? Should I consider getting off Requip? My Neurologist has said that if the switch to Horizant didn't work that I could consider Codeine.

Paul M.

Medical Reply

The concerns with the dosing of Requip have to do with other issues. The problem with dopamine agonists like Mirapex and Requip is that they work very well initially then over time (months to years) worsen RLS in a process called augmentation. Since you are already on Requip ER at 4 mg and not doing well (despite the addition of other treatment (Horizant or gabapentin), it is quite likely that you are already experiencing the augmentation issue. I actually recommend going no higher than 1 mg of Requip (in the medical articles and books that I have authored) as augmentation increases with the dose of the dopamine drug (most regular specialists do not know this information).

Horizant is simply a better delivery system for gabapentin. However, Horizant at 600 mg only releases 300 mg of gabapentin so it would be difficult for it to match the 2400 mg of gabapentin (even though most people do not absorb gabapentin very well at higher doses, you are still taking a much higher dose).

Opioids are an option for treating RLS and augmentation problems from dopamine agonist drugs. However, you could consider increasing the dose of Horizant (even though it is only FDA approved for 600 mg per day) and combining it with an opioid. Often, a higher level of RLS expertise is necessary to achieve near complete RLS relief.


Sent: Thursday, July 14, 2016 3:12 PM
Subject: Crazy with RLS

A year and a half ago I was prescribed a generic Requip for my RLS. I never have any pain in my legs but just a feeling that I needed to move, stretch or kick. My RLS was not constant, occasionally I would have it when I was bored, taking a long car ride or at night when I was tired. After a hospital stay for pneumonia I was told I kicked the bed rails at night while sleeping. That's when I was prescribed the Requip.

I loved it at first because I was finally getting a good nights sleep after suffering with insomnia for many years. I began waking up every morning with a bad headache so I started taking half a Requip pill. The problem now is I feel like the Requip may be causing my RLS to get worse. If I'm sitting And even think about having RLS, I start having it. That Ames me think a lot of my symptoms are psychological. I can't go to a movie, take a long car ride, during the day or sit and watch TV in the evening or sit and read a book, or sit and do anything, even games on my iPad.

The feeling that I need to move my legs is unbearable and makes me feel like I am going crazy, every night before bedtime I have unbearable episodes. I have tried taking the Requip earlier in the evening but it makes me extremely groggy and find myself walking around in a sleepwalking state and eating anything sweet I can find. After I take the Requip it takes awhile before I can relax and fall asleep, I dread evening and bedtime coming on because of my problems. I sometimes listen to relaxation tapes but it's hard to be still and relax when I feel my legs have to kick.

I tell myself every night not to take the Requip but I start feeling so restless I feel I have to take it. I still have trouble falling asleep it's as if my body is fighting sleep even when I am exhausted. I start kicking every time I doze off. Once I fall asleep I sleep very sound for 4 to 5 hours, wake up for an hour then fall back asleep for another hour or so. Every sleeping pill I've ever tried causes me to walk in my sleep and have had a couple of bad falls.

After all this I wanted to know if Requip could be causing my symptoms to worsen?

Beverly L.

Medical Reply

Requip (and other dopamine agonist drugs) often cause augmentation which is a worsening of RLS from taking the medication (after an initial period of improvement). Once you are on the drug, you become somewhat dependent upon it as the RLS will get markedly worse when you cut down the dose (as you have done) or even more so if you completely stop the drug.

The solution may be to stop the drug completely. You will experience about 10-14 days of marked worsening of your RLS but after that, your RLS have a very good chance of reverting back to where they were prior to taking the Requip.

If you need treatment at that point, I would consider Horizant, gabapentin or Lyrica (which do not cause your current problems with Requip).

A Reply from Beverly

Sent: Friday, July 15, 2016 9:41 AM
Subject: Re: Crazy with RLS

I do have Xanax, could I take that at night while stopping the Requip, because the RLS, I'm afraid, will be unbearable if I don't take anything?

Beverly L.

Medical Reply

Any sedative medication will help somewhat. However, it would be like taking Xanax for a severe migraine, back pain or other sleep disruptive problem. The Xanax does not help the problem but it may help you sleep (if the symptoms are not so bothersome that no sedative may be helpful...which is quite possible). However, you should be careful not to take Xanax for the long term as one can easily develop dependence and tolerance.


Sent: Tuesday, July 19, 2016 3:18 AM
Subject: Augmentation

I have been taking Sinemet for over a year for Parkinson's disease and have developed augmentation of restless leg syndrome. The augmentation pain has been helped by taking gabapentin, but is gradually getting worse. I am slowly coming off of Sinemet, but my Parkinson's symptoms are now getting worse.

Are there any Parkinson's medications that are unlikely to lead to augmentation of restless leg syndrome?

Lain M.

Medical Reply

Only the dopamine related PD drugs (and tramadol) cause augmentation. The longer acting ones (such as Neupro, Mirapex ER and Requip XL) have less of a propensity to cause augmentation and may work quite well for your PD. There are also several non-dopamine drugs that can be prescribed for your PD.


Sent: Friday, July 22, 2016 8:37 PM
Subject: Is this RLS?

I'm confident I do have RLS but am wondering if some of my symptoms are actually another condition. I sometimes get RLS in the evening as I lounge before bed and the symptoms follow the classic definition of RLS. However, I'm unsure of the symptoms I have as I drift off to sleep: my muscles randomly jump, pop, or twitch anywhere from my feet to my head. And anywhere there's a joint I can get involuntary movement from my toes, ankles, to my hips, shoulders, fingers, wrists, and neck. And in the last few months I've now noticed involuntary facial movements like my lip jerking to the side, or a side of my nose squishing up, or my chin twitching, or both eyebrows arching. All the above are painless and completely involuntary.

I will sometimes wake to these movements or notice them as I'm falling back to sleep throughout the night. The movements take different directions like sideways, forward, upward. The movements in my hips and shoulders do not produce full movement of that limb, instead they are like forward moving spasms just in that area.

For sleep medication, I've been using Medical Marijuana, vitamins and supplements. I've not yet used traditionally prescribed medications. I usually sleep 4-5 hours, wake, go right back to sleep, then have 2-3 hours of sleep broken by the symptoms I described. Maybe 2-4 times a month I will use either 1mg Lunesta or .25mg Xanax and sleep 6 hours, but I am sparing with these two drugs because of tolerance issues.

Do all my symptoms sound like RLS/PLMS, or do I also have another condition?

Amy

Medical Reply

It is difficult to say whether your jerking problems are completely due to PLM or whether you have another problem. The PLM can occur at rest and can manifest in the arms and legs. We typically do not see PLM in other body parts but sometimes the jerks are aggressive enough that other body parts may move.

You might also have hypnic jerks which occur when just entering sleep (stage 1 sleep which is so light sleep that if you wake up from a jerk, you are not sure that you have even been sleeping).

However, I cannot say that some of the facial, lip, chin movements are not due to another neurological problem and you might want to see a neurologist to check them out.



Sent: Tuesday, July 26, 2016 1:30 AM
Subject: Anxiety & RLS?

You must get a lot of patients with anxiety and I was wondering how your normally treat these patients or what you recommend? I read that Wellbutrin and Trazodone are RLS friendly but are not supposed to be that great in the treatment of anxiety? I also read that Nortriptyline/Amitriptyline not as bad as SSRI/SNRI at exacerbating RLS but they are old fashioned and better in treating depression? I have tried two SSRI and one SNRI and all three made my RLS a lot worse.

I am already taking max dose of Pregabalin but still have some RLS breaking through. Narcotics are not available for me. I know I am in a difficult situation but i wanted your advice on how to tackle this?

My plan is to start Pramipexole or Ropinirole until RLS is well controlled and then start a SNRI/SSRI. Then increase Pramipexole or Ropinirole when needed bearing in mind my your recommended max dose to try and avoid augmentation.

Laura P.

Medical Reply

Trazodone is not a very good antidepressant or anxiety drug but at higher doses (like 150 mg or more), some patients may get significant benefit. Wellbutrin is fairly good for depression but may worsen anxiety.

Nortriptyline seems to be more RLS friendly but amitriptyline is not. They may work for anxiety but your mileage may vary.

If you want to start a dopamine agonist, Neupro patch would be a much better choice as it has less of a risk for causing augmentation.


Sent: Wednesday, July 27, 2016 10:43 AM
Subject: Hydrocodone-Ibuprofen 5-200

I have had RLS for 12 or 13 years. My symptoms occur day and night although they are worse at night.

As of a few weeks ago, I am taking one .25 mg Mirapex at supper time, and a 5 mg Hydrocodone "every 4 hours as needed". And this works better than anything I've used for a long time.

The problem is that I need to take the Hydrocodone every 4 hour, without exception. Otherwise the crawling in my legs gets bad. So I'm taking Hydrocodone 6 times per day. And I'm worried about the danger of doing this for an extended period of time.

Ed M.

Medical Reply

The greater issue here is that you may be experiencing augmentation (a worsening of RLS from taking a dopamine agonist drug) from your Mirapex.
Even though you are on a low dose of Mirapex, this augmentation problem can occur. Getting off the Mirapex may calm your RLS down (after 2 weeks of markedly increased RLS symptoms).

The problem with hydrocodone is that it only lasts about 4-6 hours so must be dosed frequently. The other issue is that it contains either acetaminophen or ibuprofen which do not help RLS but may cause side effects in the long run (kidney or liver).

In your case, I would suggest considering methadone (which does not contain another drug) and lasts about 8-10 hours.

The addition of drugs like Horizant, gabapentin or Lyrica may reduce your need for an opioid.

A Reply from Ed

Sent: Thursday, July 28, 2016 5:59 AM
Subject: Re: Hydrocodone-Ibuprofen 5-200

Before going on my current medication, I spent several weeks without any type of dopamine agonist. After a very rough couple of weeks, my RLS symptoms did settle down quite a bit. And since then the symptoms have stayed pretty much at the same level. So my neurologist and sleep specialist were both assuming that there was no current augmentation. I'll double-check with them about this. Unfortunately, I have tried Horizant, gabapentin, and Lyrica. And none were at all effective.

I doubt that either of my doctors would move me to methadone. If that is the case, then besides the ibuprofen risk, my other concern would be long term use of hydrocodone at 6 times per day. For example, possible dependence or addiction and perhaps the need to keep increasing the dosage.

Ed M.

Medical Reply

It sounds like you did experience augmentation in the past which puts you at higher risk of this happening again. I can't say that you do have augmentation currently, but it is still a significant concern.

You may not have tried high enough doses of Lyrica and Horizant (I often give more than the FDA approved dose of 600 mg per day).

Addiction is less likely with 30 mg of hydrocodone per day but still possible. Lower doses of methadone would probably work better.











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