Methadone cause?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
doety
Posts: 12
Joined: Sat Feb 26, 2011 9:10 pm

Methadone cause?

Post by doety » Sat Feb 26, 2011 9:42 pm

Would appreciate any comments on what's going on. Right now, I'm sitting here afraid I won't wake up tomorrow.

Fifteen years ago, I couldn't sleep. Jumped up all the time; finally self-diagnosed Restless Legs Syndrome. Doctors knew nothing; most people made fun of it. Long story short: I met others who had it, we struggled, got doctors to prescribe various meds, mostly we struggled. A sleep test diagnosed "moderate sleep apnea and moderate restless legs." Even though my father had sleep apnea horribly and died at 57, it never occurred to me.

Over the years, I went through so many drugs and used a CPAP machine, off and on.
One recent doc said people were using Methadone for RLS and why didn't I try it. I did, seemed fine until it didn't. After another sleep test, another doc said "you've got central apnea. It's caused by taking Methadone. I'll add an oxygen line to your CPAP." So now I have this heavy oxygen concentrator to lug around if I want to travel.

Still, this doesn't seem to be working. I wake up exhausted, have breakfast, sit down to read the paper and go back to sleep, sometimes for hours, I'm still tired. A couple of times I've gone to sleep while driving. I decided to try and get off the Methadone, have gone from 20 mg. to 15 mg. in the last week. Tonight I'll reduce it to 10 mg. I'm adding a little Mirapex (what I was using for restless legs until it augmented a couple of years ago).

I've tried researching central apnea and get different stories. I understand my brain is not getting the message to my body about when to breathe. If I get off Methadone, will it go away? I live in Denver (5,280 altitude) -- if I moved to sea level would it go away? What about sleeping with my head elevated? I've asked my doctors these questions and don't get good answers. When I've asked: "If the mask comes off, will I die? Is this going to kill me?" Both docs I've asked just laughed.

I'm sure I need a really good doctor, but I'm not sure where or how to find one. I'm in the Kaiser system and the ones I've gone to have not been helpful (and I'm afraid have caused this condition).

Would appreciate some ideas about what I should do. Thank you so much.

Janknitz
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Joined: Sat Mar 20, 2010 1:05 pm
Location: Northern California

Re: Methadone cause?

Post by Janknitz » Sat Feb 26, 2011 10:17 pm

You definitely need a really good doctor on this one.

Here's a secret that can work for you in Kaiser. Go to the Kaiser website and search by specialty for a physician (you probably want a neurologist who specializes in sleep in this case). Research all of the sleep specialist neurologists in your Kaiser region (i.e. Northern California or Southern California regions). You can ask for an appointment with ANY specialist in your region, even if they aren't at your "home" kaiser center. You may need to get your primary care physician onboard for this, and you may have to drive a long distance

I regularly drive close to 100 miles to see a cardiologist in the Kaiser system who specializes in adults with congenital heart disorders, and used to drive about 70 miles so that my daughter could see an ophthalmologist that was a pediatric specialist (right after she was discharged from that specialty the best pedi ophthalmologist in our town joined Kaiser--grrr!).

As long as your doctor is willing to refer you to a specialist in the first place (the biggest hurdle), they will generally not argue with you about WHICH doctor within that specialty--it's all the same system and doesn't cost Kaiser anything extra if you want to go elsewhere in the system.

It's a pain to travel these distances, but this is way better than getting stuck with a lousy specialist because he/she is the only one in your home area.
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mars
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Joined: Fri Mar 27, 2009 8:30 pm

Re: Methadone cause?

Post by mars » Sat Feb 26, 2011 10:36 pm

Hi doety

Methadone can adversely effect your breathing - see -

http://www.drugs.com/sfx/methadone-side-effects.html

If you have difficulty in getting off methadone I suggest you get together a small support group of friends who will stick with you, on the phone or in person, whilst coming off, and staying off.

If you check out this thread you will find useful leads regarding RLS -

search.php?keywords=restless+leg+syndrome

I have to question the wisdom of prescribing an addictive drug to treat anything, never mind RLS, which is often associated with breathing problems.

Good luck

Mars
for an an easier, cheaper and travel-easy sleep apnea treatment :D

http://www.cpaptalk.com/viewtopic/t7020 ... rapy-.html

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kteague
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Joined: Tue May 16, 2006 8:30 pm
Location: West and Midwest

Re: Methadone cause?

Post by kteague » Sat Feb 26, 2011 11:43 pm

Hi Doety. Glad you found your way over here. I knew I was in over my head and that you'd find people here with much more to offer you than I on the subject of central sleep apnea. You said you've decreased your dose of Methadone, so that is a step in reducing your risk. Please try not to fear going to sleep - you've gotta sleep. (Been there - done that) Step by step you'll work through this. I'll bow out now and leave you in good hands.

Kathy
aka Sleepdancer

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Mary Z
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Re: Methadone cause?

Post by Mary Z » Sun Feb 27, 2011 3:29 pm

Doety, sounds like you're getting good advice. Just a lot of leg work for you to do.
You didn't ask for advice in coming off the methadone and it sounds like you are doing well. Just a word of caution- don't try to come off it to fast especially now that you are decreasing to 10 mg this week. You may want to come down 2.5mg at a time from here on. I think It will help secure your success by not going to fast or quickly. Good Luck. On the other hand, my advice was unsolicited, so if you're doing fine, keep up the good work.
Mary Z.

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