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

[doety]

Thought I would report back on what's going on. I got pretty down (I know you ALL understand that), but right now I have some hope.

The story: After 16 years of various drugs for RLS, and getting what my doc called to "the end of the line on meds," I took Methadone, then was diagnosed with central apnea. The doc said I wasn't "even trying to breathe at night." It was a scary diagnosis, and a big pain in the rear. Anyway, I needed help, and wasn't getting it from the docs I went to.

After spending an hour with my therapist who helped me get my act together, I made a plan and reached out to lots of places. Ann told me about the website CPAPtalk.com and they helped. Then I e-mailed a bunch of hospitals around the country, including Porter in Denver, where I live, because they just opened a sleep clinic. Talked with some great nurses who encouraged me, told me I should get another sleep test in a hospital and could get a different kind of machine from the CPAP.

I talked to my primary doc, who recommended a neurologist who recommended a pulmonologist (I had seen all of these before, of course, but maybe this time I complained louder or asked the right questions, I don't know). I e-mailed the pulmonologist, asking for help, and this is what he e-mailed me back on Friday:

Unfortunately- things may not be as cut and dry as your other sources may suggest. I just returned from a meeting- current topics in sleep medicine- sponsored by the American Academy of Sleep Medicine. One of the sessions was on opioids and sleep apnea, given by a physician from Mayo Clinic. There is a lot we do not know about the problem. We do know it is common, 30-70% incidence of central apneas with opioids. However the long term significance of it and any therapy is unknown. As you might expect, getting off opioids is the preferred therapy. Oxygen works more than 50% of the time. There are mixed results from bilevel and ASV. One study with ASV showed no benefit, another showed partial benefit. However, the published data on these therapies is somewhat scant. Also, for most people- these therapies are quite expensive. Bilevel is usually $1000+ per year in copays, ASV is even more expensive. Perhaps we should have a prolonged visit of 40-60 minutes to try to sort things out. It would also be of potential benefit to me to start with some monitoring of your breathing on your current therapy- to help me make better use of future therapy and tests .


SO (sorry about the long message) I feel so much better, just knowing that someone listened, that he apparently has fairly up-to-date info and that he's willing to work on this with me. I'll let you know what happens.

[ViewsAskew]

Doety - glad you're on the move with this.

Hope you find out info that helps you get what you need, and also helps all of us, too. Thanks for sharing what you've learned so far.

PS - is there another Ann? I know I didn't say anything to help you...

[sleepdancer]

Doety, the doctor's response is encouraging, especially since even though current in his training, he acknowledges that understanding of this topic is still emerging. That's honest, and doctors who are eager to stay current are a valuable resource to a patient with a complex problem. He sounds realistic about the issues at hand. Ideally he will find a solution for your RLS that doesn't include central apnea. That would be my first desire. There is certainly no one-size-fits-all. And if that can't happen, that he'll find the central apnea treatment that works for you, no matter which side of the statistics percentages you may fall in. If you're so inclined, please tell him you're aware of one person who gets decent night time relief from using a TENS Unit and ask him if that's worth considering for your situation. Wishing you the best.
Kathy

[doety]

I will do that Sleepdancer, I've never heard of TENS, but my goodness I'm willing to try anything, and thought I had. I'll let you know what he says.
Ann -- you mentioned in one of your posts about that CPAP discussion group, I'd never heard of it and was hoping for something like we have here. People on that site are very helpful.

Sleepdancer: One of the problems, since nobody watches me when I "sleep," is that I don't know how much of my discomfort is RLS and how much is Sleep Apnea. When I self diagnosed the RLS so long ago (17 years ago?), I had grabbed onto RLS because it seemed to fit and I had no other explanation. I was stunned when I had a sleep test and they told me it was half moderate sleep apnea and half moderate RLS. But, it fit, because my father had snored so bad. It's very important for me to get the correct diagnosis.

[ViewsAskew]

I think Sleepdancer mentioned the group...

[badnights]

Sounds like you've got a good doctor there. He didn't try to dumb things down, he took the time to email, he wants a LONGER appointment (who does that anymore?), and he sounds like he's already trying to solve the problem. The two of you together should be able to do as sleepdancer says and work through it step by step.

When you had your sleep test - I think I remember from a previous post, that they told you you had central sleep apnea, not obstructive sleep apnea? The central type has nothing to do with snoring. It can get pretty complicated if you have both (opiod-related central sleep apnea and snoring-related obstructive sleep apnea). But hopefully it's just the central apnea.

Here's to the correct diagnosis, and a speedy solution. I'm looking forward to hearing how the pulmonologist works out.

[doety]

Thank you....yes, I feel very lucky, blessed. After being on this board for years, I know the problems everyone has with docs (and I've had my fair share of that, too). But, in Kaiser, you have the freedom to change doctors, but you have to get over thinking you'll be labeled as a hysterical hypochondriac.
I have both kinds. I've known about the obstructive sleep apnea for some time. I can't remember the first test, thinking it was about 9 years ago; that's when I was surprised to find out it wasn't all RLS, but some sleep apnea. This most recent test, maybe 10 months ago, showed I had central too. For the obstructive, I've lost weight, have good blood sugar numbers, I try to do anything that helps. I've had a nurse say she thought I could get rid of the central apnea by stopping the Methadone, but she didn't sound sure.

I saw an episode of "House"---anyone watch that crazy-but-wonderful docter who pops Vicodin all the time? On some episode, he started taking Methadone and his comrades were so afraid for him, saying he could die. I think there must have been something else involved. They mentioned it being a depressant. Some celebrities have died in the last couple of years and Methadone was in the mix, but they also were taking who-knows-what with it. Anyway, I called yesterday and will pick up the equipment for the new sleep test Marach 17; I'm going to call today and make that hour's appt a few days after that. Yes -- an hours appt sounds like I'm being given a bunch of diamonds. I don't mean to scare anyone. But being prescribed this with no warnings (and the doc not seeing that i used a CPAP) make me swear I'll pay more attention. You know, we're given so many things and who knows what they are -- we have to be careful!

[badnights]

There's a difference between central nervous system depressant and mood depressant. Methadone is former.

[doety]

The in-hospital sleep test is scheduled for tonight.
I'm sorry I don't get on here more often. It's so hard when I only have a couple of hours each day without RLS. I'm scared but am trying to calm down.
Probably you'all know that once you've had a horrible experience with RLS, it's hard to get back into a groove. I took an a.m. flight for a class reunion, which went fine, but the return trip was in the afternoon. Can't do it. Even though the flight attendant was an angel I had a horrible time. I sat in the very back, took some Methadone, but walked up and down the litlle plane for probably an hour. I feel so stupid -- working with therapist to get over that. Finally I got so mellow I didn't care. It's been three days and three nights of bad RLS. I get it almost all day. I think in the hospital I won't get to do the intervention things I usually do (dance, wash floors, etc.)
I'll write again when I get the report back from the doc. Right now I feel like a totally useless human being who can't do anything but walk around.

[badnights]

{{{{{{{doety}}}}}}}
This too will end

[ViewsAskew]

Will be thinking of you tonight.

[Polar Bear]

Doety, your pain is reaching out from your post.

Good luck tonight, it will soon be over.

[sleepdancer]

Doety, lets hope this sleep study gives you some current and accurate info to enable you to better target your treatments to get relief. I saw my sleep doc recently and even though she'd never heard of treating PLMD with a TENS Unit, she was pleased to hear that it is helping me, and wants to do a sleep study while wearing my CPAP and after using the TENS Unit to document my current status. Not sure when I will be doing the test, but if it verifies improvement of my nighttime symptoms I will share the results in case anyone wants to share it with their doctor. Best wishes for the test!

[doety]

Hello:
I just looked at the non-pharmaceutical place and realized that I think I was indicating I might get help about RLS from this sleep study. Reading those posts made me realize that I probably can't.

The hospital people tried to make the sleep study as comfortable as possible, but oh, lord, was it awful! All wired up, of course I couldn't sleep. RLS seems to often be set off by me being trapped (middle row of the theater, on an airplane, etc.) So after I got 10 minutes of sleep, I was up for 4 1/2 hours!! What I spectacle I was -- the sleep monitor was amazed. I think he did get some data, but it will all be on sleep apnea. When I go see my doc, we'll talk about a plan to get me off Methadone (to see if that can make the central apnea go away) and put me on something else. But the study surely won't help with RLS, right? I don't think anything helps.

[u]This is what I just wrote on the other part of our site:
[/u]
I realized that I've been telling people on the Meds site that I was getting a sleep study last Sunday night and I indicated it was for RLS. I swear to God that I can't think anymore. With no sleep or interrupted sleep or no deep sleep, I think my processes are all haywire. I"m assuming others feel this way. I keep trying to read the newspapers and I can't get through one story and figure it out. Since I used to be a reporter, this is pretty depressing.

OF COURSE my study was about sleep apnea -- you're all right. You can't test RLS with a test like that. I think I had the same circumstances as Betty. I could call my monitor and he would unhook me to go to the bathroom. At first he didn't understand about RLS, but I educated him quickly. He got to watch me dance around the room for hours trying to get over the RLS so I could get back in bed. He was amazed.

They were testing to see about the pressure of my CPAP and the supplemental oxygen (which is because a previous doc gave me Methadone, which can cause central apnea and you often need oxygen for that).

I'm looking forward to the results, and to the hour-long appointment I'm supposed to have with my doc. He has promised to work with me to get off Methadone (which I'm hoping will mean the central apnea will go away). I"m not sure what he wants to substitute, but I want to walk out of there with a plan.

I've done 3 home studies. One indicated I had moderate RLS and moderate sleep apnea (how they could tell that I don't know). The monitor I had for the in-hospital study sort of made fun of the take-home test and I think he was right to. It can't diagnose RLS and it probably can't say much about sleep apnea. The last in-home study didn't come up with any data at all; I'm sure because of the RLS.

Wonder what an RLS study would look like? Maybe just having somebody watch you all night??

[doety]

My doc just emailed and said they really got no useful information from the test -- feels like my balloon deflated. He said I'm using the right pressure or oxygen for the apnea I have.
I was hoping for a lot more information.
Now, I hope to have an appt. with him to try and get off Methadone.