Restless Legs Syndrome (RLS) Discussion Board

Hi, guys. Not the first time in the ongoing battle of dealing with RLS/WED, I am confused. I imagine that a lot of us have this in common. I thought I had found something that works. After experimenting with several opioids (always under doctor's care), I had settled on the following regimen: In the evening, at around 8 pm: 2.5 mg of methadone and 0.125 mg of pramipexole; in the mornings, at around 8 am: 1.25 mg of methadone. That worked well for about two weeks. Then, I started to have problems. My legs were okay for the most part; there were times when they gave me a bit of trouble, such early morning before I was really ready to get up, and during the day when I tried nap. But the real problem is the side effects of, presumably, the methodone. I starting having trouble sleeping, even though I also take a sleeping pill every night. I felt light-headed and a bit headachy, and generally just unwell. I can't tell if most of these symptoms are directly due to the methadone, or to the fact that I am not getting enough sleep. I noticed two things: (1) When I try to adjust the dose of the methadone up or down a little, it does not seem to make any difference. (2) no two days re exactly the same. I don't know what to do. Obviously, I will have to go back to see Dr Nuj, the neurologist who prescribes opioids at Bumrungrad Hospital in Bangkok. But she has no experience dealing with RLS. She thought that opioids were only ever used for pain control. Has anyone experienced what I have described here? Does anyone have any suggestions? I have already tried morphine, fenatyl and oxycontin, without success. I don't know whether buprenorphene is available here. Thanks.

David, the symptoms of unease that you describe fit what I felt when I initially followed my doctor's suggestion of starting out at 5mg and then increasing to 7.5 and finally to 10mg/day. I was to take this in the evening before bedtime. Things went well for the first week at 5 and for a few days at 7.5, then I started to have something like the symptoms you list. So, I backed it down to 5mg and have kept in there. I also moved my dose to mid-day because I would occasionally have some breakthrough symptoms ~3 to 5PM when I was taking the pill at dinnertime.

You need to give a bit of thought to the half life of methadone. It ranges from 8 to 59 hrs, depending upon the individual. This is much longer than the other opiods. So it might not be necessary to split the dose between AM and PM. Once a day might provide the cover that you need if you can also factor in the circadian rhythm of RLS.

Finally, your sleep issues are quite possibly the side effect of methadone that we often refer to as "alterting" and a sleeping pill is not going to be effective with this. The combination of the RLS and the methadone creates a situation that simply overwhelms the sleeping pill. I have addressed this by 1) moving the methadone to a bit earlier in the day so that the concentration has reduced just a bit by bedtime and 2) I take gabapentin to help me fall asleep. Gabapentin works differently to help you fall asleep and is the only thing that many of us can use to overcome insomnia. For me, the unfortunate part about gabapentin is that its half life is 4 hrs, so I tend to come to full wakefulness four hrs after I take it. The only thing that I have found that helps with this is edible marijuana, which does not kick in until about 2 hrs after I take it and helps me stay asleep for up to 6 hrs. I realize that probably doesn't work in Thailand, but it is the only thing that I have found so far that allows me to sleep for more than 4 hrs each night.

Steve, that is VERY interesting and helpful, thanks. Two questions: (1) What dose of gabapentin do you take? and (2) if the gabapentin only gets you through half the night, why not take more gabapentin halfway through the night? Does it take too long to kick in?

Oops. I made a mistake in my first post: I have been taking 5 mg methadone in the evening and 2.5 mg in the morning...

David, I too take gabapentin and marijuana for sleep. I am very sensitive to gabapentin, 300mg turns me into a zombie. I take 50mg 2 hours before bed and another 50 mg 4 hours after the first dose. I also take 10mg THC (via marijuana Brownie) with the first dose and 5mg 4 hours after the first dose.

David, I take 900mg at bedtime. Unlike others, I am not very sensitive to its effects. I also take it to help prevent migraine headaches, which might help explain why I have to take more than most other RLSrs. Yes, I could take a second dose at night since it only takes about 15-30 minutes to become effective, but that would put me very close to the maximum daily dose and would almost certainly cause side effects that I am not currently experiencing.

Gabpentin works well for me when I use methadone, too. Oddly, it doesn't help when I use pramipexole (which causes me to awaken frequently and get only 5-6 hours sleep). Go figure.

Another one here who takes gabapentin to aid sleep and counteract alerting on oxycontin. I find 50 to 75 mg works well and generally keeps me asleep all night. Any higher dose and I have unpleasant side effects during the following day.

Boy, I don't know what I'd do without you guys, I really don't. I asked my neurologist for advice based on the same information which I put in my first post above. Her response: Up the dose of methadone. That did not make any sense to me since my legs were controlled at my current dose of methadone, and it was the side effects that were creating the problems, and they had to be coming from the methadone. Can't blame her too much. She knows nothing of RLS. All she does at the hospital is prescribe opiates for pain relief. This was the first time she had ever prescribed an opiate for something other than pain relief. Anyway, I started taking the methadone once a day, at night, 5mg, plus 0.125mg pramipexole. I started taking 100mg of gabapentin. And I cut the dose of my sleeping pill in half. That was an improvement. But I am still having some insomnia problems and am still experimenting. A few days ago, I upped the dose of gabapentin to 200mg. Last night, I woke up and could not get back to sleep, so I took another 100mg of gabapenting. The result: It knocked me out. I slept soundly until 8 am. But I feel horrible today: dizzy and headachy. And I can't lie down for nap. My legs won't allow it. (I had only taken 2.5mg of methadone the night before; as I said, I am still experimenting.) I guess I now know what my maximum dose of gabapentin should be....

This is so much fun, isn't it?!

David, it took me many months of juggling different meds, different doses, and different times to hit on my current regimen, which provides tolerable relief, but is sooo much better than the doctor's prescription. By tolerable, I mean: still have jumpy legs starting in the afternoon (mild). Moderate jumpy legs from 5-8pm, no leg symptoms at all from 8pm until the next afternoon. Easily fall asleep at 9-9:30pm. Wake a couple of times to pee but easily fall back to sleep. Generally get 6-7 hours sleep. Feel mild to moderate sleep deprivation every day.

Yeah, so much fun (((

Yes; like Holland the breakthrough for me came when I started to experiment with combining meds that were prescribed as mono-therapies by my various medical professionals (PHP and sleep consultant). None of the drugs worked particularly successfully on their own but using feedback and suggestions from this website and after prolonged trial and error I have found a system that is working at present - so much so that at my last appointment my sleep consultant was taking notes from me with a view to trying my system on other patients! I am certain that if I had proposed the system to her before embarking on it, she would have attempted to disuade me from it as being too complicated and not in accordance with given medical wisdom as she understands it.
It does seem to be necessary in many instances to start treating official medical advice as a basic springboard and really take ownership of your treatment yourself - ideally after amassing a stock of various meds.

Also, don't forget to keep an eye on your ferritin levels. Getting them up helped me a lot. And marijuana also helps a lot with sleep if you can get it.

The trials and tribulations continue. Currently, I am taking 5mg methadone, 0.125mg pramipexole and 100mg gabapentin, all about an hour before going to sleep. I am also taking 2.5mg of Ambien (zolpidem), down from 5mg a week or two ago, and 10mg prior to that. As you can see, I am weaning myself off of the Ambien. I am getting 2-3 hours of sleep at the outset, after which I struggle to get an hour or two of sleep the rest of the night. I am hoping that shortly after getting off the Ambien completely, my sleep will improve (but by how much?). Up until two days ago, my legs were okay; it was the side effects that I was having trouble with. But for the last two nights, my legs have started bothering me halfway through the night. I don't know what to do about that. I don't want to increase the dose of either the methadone or the pramipexole. I will probably try going to 200mg of gabapentin. I don't remember how I have done at that dose; I wasn't at that dose for long. I know that I did not deal very well with 300mg. So, it is 4.23 am and I can't get back to sleep. Should I take another 100mg of gabapentin? Decisions, decisions!

David, Hmmm... you didn't say directly, but it sounds like your sleep is interrupted by legs jumping. If so, I suspect that you will need to increase the methadone or pramipexole. I probably would increase the methadone as keeping the pramipexole dose very low is really important. If your sleeping is interrupted by waking up and having trouble falling back to sleep, but without leg jumping, then increasing the gabapentin may help, either by increasing your dose before bed, or by taking a second 100mg dose a few hours after the first. Taking the gabapentin at 4:30am is likely to give you the gabapentin hangover that lots of us are familiar with.

By all means, try to get off the ambien, it almost never helps the insomnia caused by RLS.