Restless Legs Syndrome (RLS) Discussion Board

Whoop... whoop....

This class of drugs seems to be inconsistent with folks here.

1. Some people do not metabolize gabapentin well - so they developed gabapentin encarbil (GE). If someone has difficulty with the original, it's worth trying GE. Over the years, and before they had GE, we would see some folks that just didn't seem to be successful using it - hopefully GE will decrease the number of people who have no luck.

2. Many people have initial difficulties with excessive sleepiness, but for most, it goes away in a few days to a week or so. Some of us, though, just never do get used to it. So, we see some folks stop it because of this.Not sure if the excessive drunken-like quality at night goes away. For me, it never has. But, I also have trouble with daytime sleepiness with it, too.

3. Dosage is ALL over the board. We have people here taking just 100-300 mg and it works. On the other hand, I was up to 1800 mg and still had breakthrough. No idea of the average - and it may be hard to assess given we can't really know other folk's symptom levels.

4. Gaining weight is a common complaint.

5. I have no idea how prevalent - my guess is that it's a low number - but several people over the years here have said that it seems to lose effectiveness over time. Some people have been able to increase dosage here and there and keep using it for awhile. But, at some point, either side effects or the upper dose limits cause issues.

Doctor, I am SO glad that you finally able to sleep. I hope gabapentin works for a long time for you. Please keep us up on how you are doing.

WBruce, that sounds great. Do you have creepy-crawlies or painful RLS? I'm thinking of trying gapapentin but am pretty happy with low dose ropinerole for now. I have the painful kind.

I do not have painful symptoms.

Cut the G down to 900 mg last night and awakened twice but was able fall back asleep. I think that I will stay at this dosage. Feeling much better about life and the sleep I am getting. Will cancel my trip to Florida and stay on this med. Hooray!!!

WBruce wrote:I do not have painful symptoms.

Cut the G down to 900 mg last night and awakened twice but was able fall back asleep. I think that I will stay at this dosage. Feeling much better about life and the sleep I am getting. Will cancel my trip to Florida and stay on this med. Hooray!!!

Truly great news. It is very hard to do what you did - and you stuck with it and it paid off. Per dosages - I've definitely found that in terms of tolerance, I'm almost always better keeping the dose so it "just" works. When I sleep through the night completely, I almost always have issues more quickly than if it barely keep it covered. To awaken a few time, move a bit (but not have to get out of bed and walk), then fall back to sleep - that is great.

Have not slept longer than 2 hours at a stretch for the last week. Gab. is definitely not the answer for me. Talked to Dr. E on Monday and he said he would send me an Rx. for Methadone which I have not yet received. So waiting. He wants me to start out at 2.5 mg for 5 days and then bump up to 5 mg. if necessary.

Yeah, it is a tricky one, I think. When it works, it works well. Many of us have issues with it - either it's not enough for the symptoms or the side effects get us.

Hope the methadone works well for you.

If I could do it again, I'd take regular holidays from methadone to avoid tolerance and dependence. But, not everyone gets tolerance or even has a hard time stopping it (I didn't have difficulty stopping the first two times, but not sure it will be so easy this time). So, hard decision to take breaks where you have no coverage and you're not even sure it will be a problem! So, I amend that, if I could do it ALL over again from day one, I'd wish for someone to let me alternate a DA with an opioid - always covered, never augmented or dependent! Guess many of us wish we could turn the clock back as the medical community learned more and found that some things were better than others.

I asked Dr. E. about alternating meds to avoid dependence. He said that by stopping and starting an opioid that you are going to be messing with the blood levels since it takes a few days to get the proper blood level once you start. Secondly, he said that dependence and tolerance are not usually an issue with methadone and that I can expect to be on the same dosage 10 years from now that works now.
Someone mentioned in an earlier post that the people at Johns Hopkins CARE. It will be a week tomorrow and I am still waiting for my Rx. Furthermore, I waited an additional 2 weeks for Dr. E. to get back from vacation ( he only works 3 days a week when he does work) since he had nobody who would write an Rx. in his absence. I would definitely take issue with that person. Just saying.

yeah, he is right. Not many of us do develop it. But for those that do, his advice isn't helpful - but that's just my opinion :=). . I am one of those that develops tolerance to opioids and found out the hard way. I'm not the only one here, either - but have no idea if it's .1%, 1%, 10% or what. Just that is does happen.

If I'd just stopped them once every 6 months for a week or two, maybe I'd still be at my starting dose. Or maybe the best tactic is to wait and see if you are someone who develops it, then alternate. I started at 10, went to 12.5,then 15 mg, etc. Every 8-12 months, like clockwork, I have to increase. When I alternate, I do not have to.

And, many of the people here have had to stop an opioid for one reason or another. Some of them have been very, very sick. I don't know the stats - maybe it's such a small number that it seems pointless to bother. As someone who's dealt with both, I wish someone had bothered.

So sorry you are still waiting. While I've had mostly excellent results with Dr Buchfuhrer's office, there are some who've not had it that way. It seems so unfair when it happens to you and everyone else talks about how great it is!

My first night on methadone.

I started my first night with only 2.5 mg. and it did a pretty good job of controlling the RLS symptoms with just a few breakthroughs during the night and when they did occur, were very low intensity. However, I did not sleep any or at least minimally due to alerting. Now my question is, is this common on methadone and is it temporary?
Note to viewsaskew: I am not seeing Dr. Buchfuhrer but rather Dr. Earley at Johns Hopkins.

Yes, I know you're seeing Dr. E. I was just saying that the same thing has happened with Dr B - with another good doctor. It's usually very good, but sometimes it slips and someone doesn't have the great experience. I think because we talk them up so much, that when it's not good, it seems even worse!

Per the alerting - it's extremely common with all opioids. Dr E and other docs at JH seem to think it may be related to glutamate. I find, at least for me, that gabapentin resolves it....but it makes me sleep almost too well. I've found - probably because of the long half-life - that I can take 1/2 to 2/3 of my methadone long before I would think I'd need it, let the altering happen in the earlier evening, and still get good results during sleep. If I take some right before I go to bed, as long as I get to sleep, I don't usually awaken.

These are just estimates and it may not work for you - but you might be able to take, say, 1/2 your dose 5 hours before bed, then the remainder just as you hit the sheets. You'd have to futz with the times - and Dr E may not want you to do that.