Restless Legs Syndrome (RLS) Discussion Board

I recently had to stop taking Mirapex due to augmentation, I was on it over 10 years at dosages up to 2.25mg/day. I was then prescribed two 325mg tablets at bedtime and it worked for a short time, then it quit working. Then, I was asked to try one tablet Carbodopa-Levodopa 10-100 at bedtime also. I got some relief and was sleeping up to 4 hours at a time. Now the symptoms of RLS in both the arms and legs are present any time I sit or lie down for a few minutes any time of day. My hot tub is getting a workout as I am in it 5-6 times a day to get some relief. I have had RLS for 40 years and in my old age it appears to be getting worse. Is this a reasonable pharmaceutical approach to this disease? Can I increase the Carbo? or the Hydro? My Phyician is a nice guy but this is not his field. Neurologists in my region of Oregon, I have learned, are not taking RLS patients. Help, I am at a loss to where to go from here.

Carbidopa/Levodopa is the same type of drug as Mirapex but is faster acting and is used for Parkinsons, not RLS. RLS experts do not use it to treat RLS and strongly recommend against its use on a regular basis because it rapidly causes augmentation. Augmentation is where the med stops helping and starts making your RLS worse.

The facts that you were on Mirapex for so long, were up to a massive dose (the FDA max for treating RLS is 0.5mg/day) and that you have symptoms in your arms any time of the day are all strong indicators that you have augmented on dopamine meds and need to get off of them and never take them again. However, since you are taking so much, you will need to slowly taper down to about 0.25mg before stopping. This will be incredibly difficult unless you are taking an opioid, such as the oxycodone or methadone. Whatever you do, DO NOT increase the Carbo. It is pouring gasoline onto a raging fire.

It isn't clear from your message which med you were taking two 325mg tablets at bedtime. Obviously it isn't Carbo or Mirapex.

My best suggestion for now is to read through this document, highlight a few sections and then give it to your doctor and ask him to read it and then get back to you.https://www.mayoclinicproceedings.org/a ... 0/fulltext

When you speak with your doctor after (s)he has had a chance to read the document, emphasize that you REALLY want to get an opioid prescription that will at least cover the first week of withdrawal. Some doctors try to use gabapentin or Lyrica and these drugs are not strong enough. Only one of the opioids (even a weak one like tramadol or codeine) will help. If your doctor resists, emphasize that you only need enough for a week, not to treat your RLS forever. With that said, many of us who have been where you are now have been on opioids for years, but you can fight that battle with your doctor after you have started to recover.

Also, read through the posts at the start of our forum on Augmentation to learn more about what you can expect as you go through withdrawal from the Mirapex. Mirapex is not addicting but it causes severe dependence and the withdrawal process can take several weeks with little to absolutely no sleep and horrible RLS.

Finally, if you are able to travel, there is an RLS Quality Care Clinic at Standord and there is also a doctor in LA who specializes in treating cases of augmentation. The name of the doctor in LA is Dr Mark Buchfuhrer and he is often available to consult by phone with doctors like yours who need guidance.

thank you for your quick response. Just slept for one hour and 45 minutes, feeling somewhat refreshed. the 325mg tablets were hydrocodone with acetaminophen. I will follow up with the local doctor and with Stanford. Thank you again.

The hydro plus acetaminophen mixture is intended for pain relief following surgery. Taking it for a short time to treat RLS is okay, but long term daily use of acetaminophen can eventually cause liver damage. For a long time, doctors almost automatically told people to take "Tylenol" for any kind of pain but then the doctors learned the damage that they had been causing with that advice. If you stick with hydrocodone, be sure that your doctor prescribes the form that does not include acetaminophen.

pexj I really feel for you. At 67 I've been suffering from RLS my whole life. For 1 year at 57 I got off Clonazepam and tried gabapentin, all the DAs up to 4 mg Requip extended release (nuts). I was put on Carbidopa/Levodopa near the beginning and hallucinated for 48 hours (bizarre). Finally with RLS 24-7 my GP put me back on Clonazepam but I believe the damage was done and my dopamine receptors were shot. My only saving grace is I don't get much daytime symptoms, but lay down and it starts. Clonazepam used to work well. In a few years RLS got painful and a neurologist added Lyrica. I'm not sure it did much but never have a good enough rest to try stopping it. He gives me Hydrocodone as a silver bullet for use at 2 or 3 am. I used it last night and it worked great. I try not to use it often because I believe it will quickly lose its effect at this dose.

My goal is to get sleep. I use the hot tub / hot bath once or twice a day and can't imagine 6 times. Luckily I only occasionally get it in my arms. My symptoms vary but right now the worst one is the muscle on the outside of my thighs gets banjo tight. Typically now the symptoms is primarily in my thighs which is very different that when I was 25.

I believe that neurologists are reluctant to take on severe RLS patients because the opioid crisis scared the hell out of them. I know mine is. If you can find one Buprenorphine might be effective but is hard on your teeth which can't chance. I finally called Mayo clinic in my home state of Florida and after filling out all their forms (identifying I was on medicare) they told me their sleep clinic would not schedule me now, next year or ever.

4 weeks ago my oncologist/haematologist gave an iron infusion because my iron dropped from over 100 to below 25. 2 years before I begged him to try an iron infusion for RLS and he said my iron was not anaemic and it was out of his knowledge base. Since then I had throat cancer, he became my oncologist and observed the drop in iron. 4 weeks post infusion nothing is different which was a big disappointment. Being so low I thought there would be some change. Now I am searching for why my iron dropped.

If you read this, tell me if your RLS is gone in the morning? That amazes me most. A specialist told me it was because you digest iron as you sleep. I'm not sure I buy that.

Sorry for going on about my condition as I have many times on this forum. I doubt I was of any help to pexj but just venting to fellow sufferers is therapeutic for me and lets you know you are not alone. My advise is listen to Rust, he knows what he's talking about.

Stainless, never apologise for going on about your condition, as you put it. You never know when something you say will help another sufferer. We are here to support each other in whatever way we can. And yes, Rust knows what he is talking about.

Stainless, one of the Foundation webinars that was presented either by Dr Earley or Allen included a graph of normal dopamine fluctuations throughout the day. The graph was being used to explain augmentation but I remember that it clearly showed how natural dopamine levels drop in the evening and then begin climbing just before you wake up. That means that they are naturally at their highest levels in the morning and then start dropping again at dinner time. Essentially, they track your normal energy levels throughout the day.

Thank you Stainless for your response, it helps to know there are others who suffer. Since getting off Mirapex, my symptoms are at any time 24 hours a day. All I need to do is lie down or sit for a while and watch TV. If I am active, it is there but tolerable. I am up to 3 hydrocodone now, two in the evening and one at around 3am. During the day, I suffer to hold off until about 6pm when I take the two. My prescription is for 2 a day and I am headed down a slippery slope. Oregon Health Sciences and the Mayo Clinic are both looking over my medical records and hope to hear something this week. Was out of town over the weekend and stayed in a motel one night. Got to know the desk clerk as we were the only ones up in the wee hours of the morning. He also suffers from RLS and that is why he works nights. I referred him to this forum.
There is a psychological component that I don't understand. If I am having symptoms but suddenly get distracted such as a physical project, the symptoms go away.. I can also bring them on sometimes if I think about it. Is this an issue with others? Should I seek perhaps a mental health interdiction?

I gave the article listed above to my primary care physician last week and plan to visit his office today. It is 3am, I am wide awake and my right leg is bad, God I hate this. Have a circular path from the kitchen to the dining room to the living room that I am walking and will be for a while.

pexj, mental distraction is something that has been recognized as a temporary form of treatment for quite some time. It is even mentioned on the RLS Foundation's website. They speak of doing something that you enjoy that requires concentration. Things that they mention are activities such us doing Sudoku, crosswords or reading a very good book that really draws you in to the story. Unfortunately, the effects are temporary and the RLS comes back as soon as your attention wanders elsewhere.

Did you ever think about writing a book on what you know about this disease? You are way ahead of any physician that I have encountered.

Thank you, but there were a group of experts that wrote a book in 2008 that was revised in 2013. The title is "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. The second edition is much better than the first. Both are still available on Amazon for around $30.

Prior to the publication of two papers about RLS on the Mayo Clinic journal by numerous RLS experts, the second edition was the go-to resource for the moderators of this board. If you do a search of the board for "little blue book", you would will get about 60 hits.

And yet I understand your point. Many of us with severe RLS are far more knowledgeable about the disease than most doctors, including many movement disorder neurologists. If there was a way to educate doctors about RLS, I would gladly do it. I have participated in two different forums before doctors seeking to educate them about the patient experience of sleep disorders like RLS. I will gladly volunteer to do more of them even if I have to spend my own money to fly to a medical conference for a 30 minute presentation. Unfortunately, most doctors don't believe that patients can teach them anything even though most people who suffer from neurological diseases know more about the latest research and treatment protocols for their condition than any doctor other than those who specialize in that specific condition.

Clinical Management is still the Bible to me. I think now the emphasis is on gabapentin and iron followed by opioids. Some doctors say they would never prescribe a DA while others have had patients on them for decades. I would have a hard time finding a doctor to prescribe clonazepam today but I have been on it 28 years. No magic pill for most of us.

Got into a physician yesterday. We took a shotgun approach as nothing was working. Keep taking the Hydrocodone, added three tab Carbodopa/levodopa, 10mg prednisone, Advil and Ibuprophen, 600, 650 repectively 3X daily and Magnesium Sulfate. Stopped the Prednasone tpday as it kept me up all night.
Only been one day but just hanging on. He talked about Clonazepam next. How large a dose is working?

I've been on Clonazepam for close to 30 years. First 15 years it worked great. Starting with .5 mg I went to bed early, slept through the night and got up and worked through the day. Never tired, never napped and no side effects besides a little dry mouth. Every three of four years I would tell my GP I was having a harder time sleeping and they would increase the dose .5 mg. I got married a few years after I started and she told me I was sleeping but my legs were not. I bought a wildlife camera and was amazed to see my legs flailing. I had more early evening RLS than now but I was used to it my whole life and just lived with it. Finally at 57 I was up to 2.5 mg and doing fine but a Canadian study linking Clonazepam to dementia convinced me to get off it. That year was a disaster trying gabapentin and the DAs and I finally GP told me to go back on it, but no more than 2 mg. ever because chance of respiratory issues while asleep.

You mentioned being in your old age. A Harvard RLS doctor did a talk for this forum (I'm sure it is in the archive) and actually answered a very condensed question I submitted. He was negative on Clonazepam and said at my age my body could not process it. I don't know about that but can guarantee you will become dependant on it and it is very difficult to stop. If you do try it, and it works, keep your dose low as long as you can before doing slow increases to maximise years of effectiveness and minimise difficulty stopping. The only experience I have using it in the daytime was for long plane rides. That was effective but at the time I got 30 pills a month by law, no more, so if I used extra I had to cut some in half. For last 10 years doc can prescribe 90 days and added Lyrica to the mix. I would like to experiment and see if I can get off or reduce any drugs but am afraid to upset the apple cart of my neurologist's shotgun approach.

My neurologist gives me Hydrocodone - Acetaminophen 325 mg. for a silver bulllet to use at 2 or 3 am if I can't sleep and am in pain. It works very well but makes me very constipated. This is good in a way because it keeps me from taking it too often. A few months ago I started using Metamucil daily and found it helps a lot with this. I still try to keep Hydrocodone down to once a week. Do you have to deal with this? I would like to use it on when traveling to sleep but constipation can really mess up sightseeing.

I would just add, to this already long post, my Neurologist would love to lose me as a patient. Always on me to seek out a specialist. I fear the day he retires. It is very difficult to find a specialist who knows what they are doing with RLS.

I will add some personal experience with clonazepam. I take a very low dose. I was first prescribed it as a sleep aid, but only stayed on it for about six weeks before stopping. Several years later, I developed another sleep disorder known as REM Sleep Behavior Disorder (RBD). An individual with RBD, acts out dreams. I saw an interview with Alan Alda, who has RBD. He said that he knew something was wrong when he dreamed that he was throwing a sack of potatoes and woke to find that he had just thrown his pillow across the room. RBD. I knew something was wrong when I started having nightmares where I was defending myself and found that I had launched the bedcovers across the room, but that is mild and the more severe side isn't relevant here. The important point is that a small dose of clonazepam is the first tier treatment for RBD and if something else is needed, it is supplemented by a minimal dose of melatonin. I take an opioid for my RLS and had to accept that I would be on that med for the rest of my life. That is the way that I view clonazepam now. My sleep neurologist isn't thrilled with the fact that I take an opioid, gabapentin and clonazepam in combination because they are all central nervous system depressants that can cause you to stop breathing during the night, so she also insists that I use a CPAP machine all of the time.