Nightly Sinemet with hydromorphone...will I regret?

[badnights]

I've been taking the occasional pill of levo-carbidopa 10/100 (aka Sinemet) as needed to deal with breakthrough symptoms for a while now.-- [oops it;s 25/100 - I'm sureit used to be 10/100 - oh welll--]- But I recently began what I think of as a dangerous experiment. My main medication is hydromorph contin (and zopiclone for sleep). The amountof HM I needed kept creeping up, and - long story short - I'm trying a nightly dose of continous-release (CR) Sinemet 25/100. I am very scared of augmentation (over 70% of people who use nothing but Sinemet for daily RLS/WED end up augmenting), but I am hoping that using a low dose like this will avoid that problem.

One thing I've noticed is that I sleep a lot better - no more hours, no fewer wake-ups, but I bet a PSG would show more deep sleep, because I feel much more refreshed when I get up.

On day 2 after starting it, I thought I would have to stop it because I experienced painful RLS for the first time in my life, and it lasted all day long. I was sure I was augmenting. I determined to take it for at least 6 days to prove to my doctor I'd given it an honest chance, and lo-and--behold, I haven't had a problem since. It's been a week now.

I also have the short-acting levo-carbidopa for daytime naps if I need to, but I haven't dared take any since I started the nightly CR pills.

[Polar Bear]

Badnights: We know the accepted augmentation rate for sinemet is around 70% so its a big risk.
I don't know if the possible augmentation would be caused just by the regularity of taking it every night, or if the dosage comes into question.

Enjoy your improved sleep and I wish you all good things in your experiment.

[ViewsAskew]

Can you use it 3-4 nights a week, and have poorer sleep on the weekends?

For what it's worth, one of the reasons I alternate an opioid with a dopamine agonist is that my methadone dose steadily needed to be increased.

Since I started doing this? No increase needed.

Not sure why, but I never lasted more than 8-10 months before needing an increase. It's close to 2 years, IIRC, since I started doing this. I avoid augmentation by not taking the DA daily, I avoid tolerance by not taking the opioid daily (it seems).

[badnights]

that's a good idea, Ann. Maybe I'll give it up on weekends or something.

I sure would like to hear of anyone else using Sinemet in this way, if anyone else on earth is. I chose not to use the DAs because pramipexole makes me sleepy and I augmented on ropinirole. Maybe I will end up thinking one of them would have been better. But taking weekends off might save me from that - thanks for the idea.

[jstep]

Beth,

Sinemet was the first med I took when I was originally diagnosed with RLS. That was over 30 years ago. I did augment and it was from Sinemet that I first experienced painful RLS. But when I augmented so bad, I was taking 25/100 3 times daily. I was started on 25/100 once daily and increased to 3 times daily over the course of several years. I tried Sinemet again recently at the suggestion of my primary doctor. But he started me on 25/100 3 times daily and I experienced worse symptoms.

But you are only taking Sinemet once daily. And even though there is a 70% chance of augmentation, there is still a 30% chance you won't. (right?). From everything I've read in books, articles, and here on these posts, each one of us responds differently to meds. Sometimes we have to take a chance to find what works. I was (and still am) nervous about stopping Mirapex and starting Methadone. And I may very well regret it. But I decided it was worth trying in the hopes that I would find what might work for me. I really like Ann's suggestion (alternating or taking something only some days makes a lot of sense to me). But in the end you are the only one who can decide what you are willing to try. Whatever it is, GOOD LUCK. I really hope you find relief.

Jamie

[rthom]

Hey beth, Just a reminder (as much for myself as for others) When taking meds that "keep it down to a dull roar" we may forget that the physical rest or sleep may not be enough for the body to have any recuperative properties, I also am taking a cocktail that fluctuates in order to avoid unwanted side affects. I don't want to be drowsy during the day and refused methadone mostly for that reason a few days ago. Don't forget physical rest as well as sleep. Hope this new idea works for you long term.

[ViewsAskew]

Randy, please don't think that methadone makes people sleepy - it doesn't the vast majority of people. Most people here who take it have no issues. Not all, but most. Unless you know is bothers you and have tried it for at least a couple weeks to get used to it, you may find it's excellent.

[rthom]

Got that idea from the prescribing dr as well as a couple of people here and outside here. Must be like most things does one thing for some and the opposite for others? Why do folks take it if it doesn't help the symptoms and it not for sleep?

[ViewsAskew]

It takes away all my WED symptoms - that's why I take it and the rest of us do, too. Those of us who are "wired" by opioids (and all opioids do this to me) have to take something else to make us sleepy. Otherwise I'd be up until 6 or 7 AM every night.

The best part of taking it is that it removes symptoms for at least 6-8 hours, and up to 12 for some of us. It's a luxury. It's also the only opioid I've tried that doesn't cause me emotional upsets - being on edge, not being a very nice person.

You said something that, to me, is the most important thing to remember when trying drugs. Nothing works the same for everyone. If you say no to something, you might be missing the one that will help you the most. You can always stop it if it doesn't work.

[rthom]

thanks, i must have missed something or misunderstood completely. I like you don't get at all tired from opiods. More inclined to get me on the move too. Both the hydromorph and the oxycet seems to help my symptoms, one more than the other. Good to hear that it does't make people cross or grumpy--that's a big plus. My pain dr is the only one in the area that can prescribe the methadone and he's planning on giving up his licence to write for it. Also it's not allowed for anything but extreme pain or withdrawal purposes here. So on one hand he wanted me to give it a try but on the other was telling me i can't likely get it or soon won't be able to. I guess we'll see what he decides. I was under the impression he was considering giving it to me for "pain". It's great that he'll try if he can. Especially since he doesn't treat my WED, my gp does.

[badnights]

The only thing that seems true is that we can't make generalizations about how meds will affect anyone. So it's worth giving something a shot.