I've been too unhappy to update. Really, things are better so I shouldn't be so negative. But, there are still problems and there is no clear path to take. In a recent email I had asked about combining opioids and he said that wasn't normally done for RLS (the RLS docs don't have much experience here). He followed up by saying, but since you don't seem to respond as other people do, we'll have to throw out the book and just see what works best.
That's good, right? He's there, he's hanging in with me. He's willing to try things that aren't usually done.
That's also bad. It means more being a guinea pig. I'm soooooo tired of being a guinea pig. As I know many of you are, too.
The levorphanol works, but I have to take it more frequently than I'm supposed to. And, I get these nasty headaches. I think I've somewhat figured them out. Some opioids make me clench my jaw - this one does. The clenching tightens my muscles and creates an incredible tension headache. When sleeping poorly, I get trigger points in my shoulders. These headaches are also setting off trigger points. So, I wake up each day feeling like my whole back, shoulder and head is one big painful knot.
This week has been the worst. I've had to use multiple hot baths, heating pads, and massage to get the trigger points to release to I don't hurt so much.
Because it hurt so much, I used the tramadol/Mirapex combo 4 days in a row and took a teensy bit more Mirapex the last two nights because I was getting too much breakthrough. I slept poorly and awakened early with RLS. It progressed into the most nasty daytime RLS....can I say augmentation?
The levorphanol works, but causes other problems. The drugs I take for a break from it are now causing problems, too.
This afternoon after spending a couple hours pacing, I decided to take 5 mg methadone at 1 PM to see what would happen - it's now been about a month, I think, since I stopped it. After about 90 minutes, I was able to fall asleep for two hours, getting up at 4:30 PM. The RLS started again by about 5:30, I think. Not much relief in terms of time, but I did sleep and that's encouraging. I think I'll try 10 mg right now and see what it does.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.