Restless Legs Syndrome (RLS) Discussion Board

PS: I missed one of your posts. Additional response:

I was taking a little methadone in the mornings and then hydrocodone in the evenings. I don't think you could usefully take the two closer together, especially with a higher dose of methadone. I think the methadone would totally tromp on the oxycodone.

Also, I see now that you said you're taking the oxycodone every 5-6 hours. I'd guess that that's your problem, for the reasons I went over in the previous post. In my very personal and untrained opinion, oxycodone doses shouldn't be spaced more than four hours apart. In fact, I suspect it should be even fewer than that, but that's harder to say with certainty. Maybe it's just my metabolism, and maybe everyone else does fine taking it every six hours, but I'd be in lousy shape if I did that. Even if I took twice as much, I think I'd still be in a really bad mood by the six hour mark. Maybe others can chime in on this.

Ann, Oxycodone worked such a short time for me that it just wasn't worth it and I had the same awful nights as you have now.
OxyContin works much better, only after about 1 year I had to up the dose, as you know, because of tolerance issues. Maybe you could use the Tramadol extended release version as well for daytime use, like I do. I habe been on it for I think 6 or 7 years on the same dose and am still on it.

Corrie

After two night of RLS H$LL, I'm definitely not finding this to be helpful at all. As Corrie and Aiken have said, the time it helps it much too short. The Clinical Mgmt book talks about using it every 4-8 hours, so I tried 6. Then I tried 5. Then I tried 4. Even with 4 hour spacing, I still didn't get enough relief to actually sleep. After three doses (all I have per day), I finally took two tramadol at about 7 AM and then got about 3 hours sleep on the couch.

As Aiken noted, it wires me tremendously. Much more than the methadone or the levorphanol. With a short window that I could have slept (maybe an hour or so), I was laying in bed awake for over 30 minutes of that. By the time I fell asleep, I only had another 30-45 minutes before it stopped working and I was awake.

Guess I get to email Dr B and say, "Next." I was a bit concerned about the timing before, but I'm not questioning his choices or trying to influence them. I know that if something doesn't work, he'll offer the next thing ASAP.

I don't recall if you've tried this yet.. But maybe you should ask him about any ideas for low costing, controlled release medications.

Perhaps something you can combine with a short acting medication, to try and tackle breakthrough symptoms... Not a fan of the Fentanyl patch either, as it can be pretty dangerous and you're in no mental state to be sharp about dumb mistakes I gather..

But I wonder if controlled release simply wouldn't work better and at least help you become more stable, with a consistent amount being released every hour.

Ann, I also find that the effects of the meds never last as long as it is indicated that they should.

Hope Dr B's next option works better.

Polar Bear wrote:Ann, I also find that the effects of the meds never last as long as it is indicated that they should.

Hope Dr B's next option works better.

Except methadone...it was wonderful in that regard. I literally took it once a day and it kept the RLS at bay for over 3 years. I think I was hoping (without articulating it) that I'd be as lucky with some of the other opioids, even when they had a shorter half life. Too bad it hasn't worked that way.

I agree that I'll probably need a controlled release form...again, I just don't want to dictate to Dr B what to do. He's the expert, my doc is working with him, and when these others don't work, we'll end up there anyway.

OH, and for anyone on a budget, oxycodone is relatively cheap! 120 was only $25 US. Levorphanol was $130, so I was pleased. I only hope that the next option is also in the $25 range.

Good luck Ann. I have no advice of course, but you helped me so much and I wanted you to know that I wish for everything to get figured out for you.

I'm crossing my fingers, toes and legs that the next thing works!

Well, Ann, any luck with anything yet? What's happening?

I'm too tired to post about it; just doing my nightly checkin. I've slept one whole hour in the last 40 and the meds just aren't touching it. More later.

Ann, Fingers crossed that tonight brings you some sleep, if only through exhaustion.

I'm STILL awake. It's like it was a couple months ago - the opioids I was taking just stopped working. It's so weird. I must get some sleep soon as my fingers don't work, my brain isn't cognating very well...

ann. hang in there. maybe a higher dose will be suggested. or combinations.

I've a lot of latitude to try combos within reason as long as I tell Dr B what I'm thinking of doing. We have a couple options to try over the next few days....so far, no go with the first one, though it is only just 45 minutes since my second med dose, so it's possible in the next 15-30 minutes all will change.

I can hope!

Hopefully by now you've had some rest. RLS is torture!