Mirapex to Methadone to Central Apnea...and maybe help

Post by **ViewsAskew** » Wed Apr 27, 2011 11:38 pm

So sorry, Doety. That totally sux.

doety · Post by **doety** » Thu Apr 28, 2011 2:23 am

I put too much hope in that. I'll never get rid of the RLS, so I have to concentrate on what I can change. I hope this doc is as good as I first thought. If he can help me get off Methadone, that will be a huge step for me.
Walking with a friend yesterday and she invited me to go on some exotic trip -- right now, I can't do that. She said: Just decide you'll devote the next year to getting off Methadone and get that part under control. (this is assuming if I get off Methadone I won't have central Apnea and won't be saddled with that concentrator). Maybe everybody does this -- when I get up at night and can't sit or lay down, I scream in my head: I'm a worthwhile person, how come all I can do is walk? I try to realize how lucky I am compared to others who can't walk (for instance), but I want my life to be of some use. I'm getting in some hours as a volunteer at the history museum, and I've applied for part-time jobs (no call backs yet), and when it's warm like this, I can bike -- lots of joy in that.
I'm also working with my therapist on not being so humiliated when I have an RLS fit. On the way back from my class reunion in Alabama, I went up and down the tiny aisle of this plane about a hundred times -- the flight attendant was wonderful to me. I'm still embarrassed, but it's getting better.

On another subject -- I really hate that "news" about sex being a great remedy for RLS. It just another thing to make fun of. I think most of us knew that anyway, but it's not like you can use that remedy nonstop!

Thanks for the empathy. Will let you know what's happening.

Post by **badnights** » Thu Apr 28, 2011 3:26 am

I scream in my head: I'm a worthwhile person, how come all I can do is walk?

or how come I can't go there or do that or how come I have no life....

You're being so level-headed, doety; how I admire that ability. I hope quitting methadone ends your central apnea problem. And I hope you find something else that can control the RLS.

doety · Post by **doety** » Thu Apr 28, 2011 3:39 am

I'll definitely keep you posted -- I know I won't be the only person who has a bad experience with Methadone (although thank goodness many of you find it useful and have had no problems). So, we all need to know what we can do. Once again, the guinea pig...see where it goes. The upside is that I already know so many things that don't work for me! But surely there are some that do.
I heard there was a new drug out there for RLS....it's probably talked about somewhere on here. Anyone having any luck with that?

Post by **badnights** » Thu Apr 28, 2011 4:40 am

The excitement is mostly because another drug was actually approved for RLS, meaning the FDA recognizes RLS as a serious disease. The drug itself is something old, something new....

It's called gabapentin enacarbil. It's a gabapentin prodrug, meaning it's metabolized into gabapentin inside your body after you ingest it. (Gabapentin also goes by the brand name Neurontin.) Gabapentin itself is erratically absorbed; this drug is better absorbed and is also extended-release.

I haven't used it and won't, because gabapentin screws up my moods

I hope some people who are trying it will post about it. Presumably, it will affect you roughly the same as gabapentin does, only more predictably.

doety · Post by **doety** » Thu Apr 28, 2011 1:20 pm

Neurontin seems to work very well for many.
It made me dizzy and nauseated, for some reason, even in very small doses. So I won't be trying the new drug.
But it should be good for lots of people and I'm glad for them.

doety · Post by **doety** » Wed May 04, 2011 5:00 pm

I must have read too much into that doc's first message.
When I asked him the next step in getting off Methadone, he said he was going to suggest Clonodine (as opposed to Klonopin).

Research says it's prescribed for high blood pressure, cancer pain and a few other things. My blood pressure, and I'm on medication, was 77/18 last week so I guess if I tried this, I would get off what I'm taking (and I understand he's not prescribing it for that. He must be going for one of the side affects which is drowsiness.
[u]I would love comments, ideas, etc.
[/u]
I thought I had heard something bad about this drug, but I can't remember and can't find anything. This time, I'm going to be damn sure I research it enough.

Post by **ViewsAskew** » Wed May 04, 2011 9:01 pm

it's one of those drugs that works sometimes - but I don't know much about it. Hope someone else does.

Sometimes I think people (read: those helping us in some way) don't fully realize how we're clinging to every word they say. They sometimes say things in a general, rather than specific, way. We take them at face value, when they weren't really meant that way.

cornelia · Post by **cornelia** » Thu May 05, 2011 6:56 pm

A few months ago my well informed neuro told me that new research has shown that clonidine is not regarded as RLS friendly, because it reduces dopamine.

You could ask dr B what he thinks about it.

Corrie

doety · Post by **doety** » Thu May 05, 2011 8:09 pm

thanks for that -- I'm going to start a new post and see if I can gather up a little more info. Also, I'll do some more research.

doety · Post by **doety** » Mon Jun 06, 2011 7:25 pm

Back again with a new plan.

I really am concentrating on trying to make my life better -- I want to be able to travel (which is SO much trouble right now because I have to order an oxygen concentrator in my room). Because I had obstructive sleep apnea, and then took Methadone, I now have "Central apnea." I think it will disappear if I can get off Methadone.

New: Talked to a marijuana doctor here and got a RX for it. He spent an hour with me and mapped out a plan. Basically, it's to buy a brownie (known in the trade as an "edible") and cut it into 32 tiny pieces. I'm to use that at night, slowly reduce the Methadone and see what level of brownie will work for me.

Maybe other people wonder this too: If I hadn't ever started on medication, which back in the day were mostly prescribed for Parkinson's, how bad would my RLS be? Obviously, we can't tell right now because I'm always on something. I'd like to know what my real condition is.
I'll let you know how this is working.

**Oh -- I was blaming everything on Methadone, even while others said they just didn't have the problems I was having. I had been taking Klonopine for many years. I cut that in half, over last year, then recently, cut that in half, so I'm just taking a tiny piece. That made a huge difference....I didn't need to be taking two depressants. Now, I can drive without falling asleep, etc. So rather than Methadone being the big culprit that I thought it was, now I believe it was the combination.

Post by **ViewsAskew** » Tue Jun 07, 2011 11:43 am

Glad to hear that you're still working hard to get this resolved. For me, at least, it can be very hard to do. You're a great role model to me.

Interesting about the Klonopin adding to the issues. That makes sense. I think we often throw things at this without knowing how it all works, the possible effects, and especially how things will interact.

Andreadrea · Post by **Andreadrea** » Wed Jun 15, 2011 8:07 am

Doety- you're right about the klonopin being an issue with methadone. At the hospital where I work, anyone that is on a benzodiazepine plus an opiate has to get vitals every 4 hours, including oxygen saturation. Most of the doctors I work with say that the worst combo for respiratory depression is klonopin and methadone! Perhaps because they are both long-acting or something. So I am always wary when one of my patients is on that combination, we have had some very apneic patients.

doety · Post by **doety** » Wed Jun 15, 2011 1:12 pm

Thanks for posting that. Maybe it's not general knowledge among docs? In any case, my doc, now retired, was clearly ignorant. What's worse is he didn't look at my chart, apparently, and see that I was already on a CPAP. It scares me. I'm now very careful to be sure I'm on the oxygen feed when I go to bed.
Still. I started the regime last night where I ate a tiny piece of MJ brownie and will start reducing the Methadone. My therapist talked me into making an appt with my pulmonologist so that he'll know what I'm doing. I can already tell from reducing the Klonopine that this may be the hardest thing I've ever done.

Mirapex to Methadone to Central Apnea...and maybe help

Andrea