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Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sat Jun 18, 2016 8:16 pm
by ViewsAskew
So sorry you are going through this.It is miserable...

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sat Jun 18, 2016 9:40 pm
by debbluebird
Food and eating are my issues. The first time I gained 100 pounds over time. This didn't happen until I was also 50 years old. Most of my life I kept my weight down, but I always had to watch it with exercise, and intake. Then I lost 40, gained it back and lost it again. But then when I took Lyrica, it went back on so fast I couldn't believe it, three months. That was when I found Methadone, and then again weight right back down. I was just starting to lose again, after all of my joint replacements, when all of this happened. Each of these times, I've only been able to lose part of the 100. My blood pressure suffers, as well as my joints. Now it's the sleep apnea. I really believe that losing the rest of the weight will help.
The other issue, I don't even want to think about. It happened just before I augmented the first time with Mirapex and during the augmentation. It was a very bad time.
Tonight, I'm thinking of taking the Kratom and no Mirapex. Kratom for the RLS and maybe even the Ambien, just to see what will happen, now that the withdrawal is over. I didn't go to sleep until after 5 am this morning. I was really wired last night. I hate the feeling while at the same time being exhausted.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 1:23 am
by jul2873
Here's a tip if you're having trouble sleeping. Take a half a tsp. of agamatine sulfate (you can order it on Amazon) dissolved in water before you take the kratom at night. It will make you sleepy, and it also keeps your tolerance down. Just don't take it close to the morning, like I did at one point, as you'll be sleepy all morning. But it's great at night. Good luck!

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 7:03 am
by sleepdancer2
Deb, if methadone gives you your life back, maybe you can get your doctor to order an ASV machine which is like CPAP except it can initiate breaths for you if you have central apnea events. You wouldn't be the first person I've seen post that they had to go that route because stopping the methadone wasn't a viable option.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 7:32 am
by debbluebird
sleepdancer2 wrote:Deb, if methadone gives you your life back, maybe you can get your doctor to order an ASV machine which is like CPAP except it can initiate breaths for you if you have central apnea events. You wouldn't be the first person I've seen post that they had to go that route because stopping the methadone wasn't a viable option.


Yes, I have thought of that. First I have to try the bipap machine. It's been on back order. I have to fail that, before they will order the ASV machine. I have a feeling that, that is going to happen. My pressure is very high. 23 and 19 for the bipap. I'm afraid the doctor won't order the Methadone. I may have to find another doctor who will. I will find out Wednesday. I have all of my information prepared to present to her. The doctors up here are afraid I will just stop breathing for good. I have decided that, it's ok with me. I'd rather be able to function in the mean time. I know my heart will be affected one way or another. But one of my arguments is that sleep deprivation also affects the heart.
I'm trying not to play the what if game. It's not a bad way to go. My Dad dropped dead of a heart attack. My Mother died of congestive heart failure. I have high blood pressure. My Mother had an enlarged heart for many years. Funny, it's Father's day now. He died on the 19th of June, Father's day. My Mother died on the 20th of June, 24 years later. They had been married on June 21. They were 20 years apart in age. He was 68 when he died and she died one day after her birthday, at age 70. I have always felt different about all those dates. I am 65.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 8:18 am
by debbluebird
I got the years wrong, it was 22 years apart.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 9:12 am
by debbluebird
Tonight is so much better without the Mirapex. I'm calm and sleepy. I did sleep some, I just have a lot on my mind. I know that I have rambled quite a bit lately. I contribute that to sleep deprivation and drugs

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 9:47 am
by Rustsmith
deb, hopefully this all means that you are starting to get things under control and figure out how to manage your RLS without the methadone.

As for the rambling, that has been part of the value that you have given us of what the experience has been like to go through methadone withdrawal. This is one of those times where the way that you have said things has been just as important as what you actually said. Your rambling notes did far to tell us about what you were experiencing than you probably could have done with just text.

Thank you for documenting this experience for the rest of us. It has been an invaluable contribution to our store of information about RLS experineces.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 10:28 am
by debbluebird
Rustsmith wrote:deb, hopefully this all means that you are starting to get things under control and figure out how to manage your RLS without the methadone.

As for the rambling, that has been part of the value that you have given us of what the experience has been like to go through methadone withdrawal. This is one of those times where the way that you have said things has been just as important as what you actually said. Your rambling notes did far to tell us about what you were experiencing than you probably could have done with just text.

Thank you for documenting this experience for the rest of us. It has been an invaluable contribution to our store of information about RLS experineces.


Thank you and everyone else for all of the support. I kept my husband up last night with my hyper behavior making chocolate chip cookies. Tonight, I think I'm awake because I had some. It does that to me. At least I feel calmer tonight.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Sun Jun 19, 2016 3:34 pm
by debbluebird
I think the slight headache I had the first time with Kratom was just from sleep deprivation. I've had the same feeling without the Kratom.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Mon Jun 20, 2016 8:42 am
by debbluebird
Well, after a second day without Mirapex, I feel so much better. Now, if I could only sleep longer. Last night I did get about 3 hours. Even though that isn't very long, I was able to function. Now I realize without increased sleep that won't last, but it is night and day. I had a foreign substance in me. I just can not tolerate the feeling. Yes, it took away the RLS, but I don't believe that it was worth it. I don't know what lies ahead, but that's ok. I'm at peace with this decision.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Mon Jun 20, 2016 4:24 pm
by debbluebird
I'm pretty sure I am having some withdrawal from the Mirapex. I'm having very strong PLMs at different times, all day and night, but not constantly. Also both legs. My normal is just the right leg. Took an Oxycodone along with Gabapentin and Kratom last night. I was able to lie on the side of which ever leg was going. It would change back and forth throughout the night. Slept from about 2:30 am to 10 am. Legs are very sore this morning from the jerking. The weight of my body always seems to help. Hope this doesn't last more than a couple of weeks.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Tue Jun 21, 2016 5:29 am
by debbluebird
Will not be taking Oxycodone tonight, or the next few nights. I've been throwing everything else at it without much luck. At first I thought I was getting somewhere, but PLMs getting stronger. Oh well.

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Tue Jun 21, 2016 8:42 am
by badnights
Deb what were you taking the last few nights instead of Mirapex? Oxycodone? I guess I'm just wondering how you can sleep at all, you must be taking something.

Re your statement "Tonight is a Mirapex night. I can feel my heart pounding. It feels like something running through my body. It's a hyperalert feeling. " that sure sounds like if you use Mirapex, you would need to counter it with a sleeping med, and that kind of approach can cause more problems than it solves. Given that, plus the beginning of impulse control issues after such a short time, and possibly withdrawal too, I would have to agree you're better off without the Mirapex. Have you tried ropinirole or Neupro? I hate DAs with an intensity born of fear, but they do say that the side effects are different...

I don't think you've exhausted your non-methadone opioid options yet. It's hard to think clearly when you're so sleep-deprived. Me too, coincidentally I recently watched the opioid webinar and was really, really impressed with the clarity of his presentation. I immediately forgot everything, but saved a copy so I could refer back to it. So many different modes of action among the opioids! What did you have against buprenorphine?

Re: Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Posted: Tue Jun 21, 2016 12:03 pm
by debbluebird
badnights wrote:Deb what were you taking the last few nights instead of Mirapex? Oxycodone? I guess I'm just wondering how you can sleep at all, you must be taking something.

Re your statement "Tonight is a Mirapex night. I can feel my heart pounding. It feels like something running through my body. It's a hyperalert feeling. " that sure sounds like if you use Mirapex, you would need to counter it with a sleeping med, and that kind of approach can cause more problems than it solves. Given that, plus the beginning of impulse control issues after such a short time, and possibly withdrawal too, I would have to agree you're better off without the Mirapex. Have you tried ropinirole or Neupro? I hate DAs with an intensity born of fear, but they do say that the side effects are different...

I don't think you've exhausted your non-methadone opioid options yet. It's hard to think clearly when you're so sleep-deprived. Me too, coincidentally I recently watched the opioid webinar and was really, really impressed with the clarity of his presentation. I immediately forgot everything, but saved a copy so I could refer back to it. So many different modes of action among the opioids! What did you have against buprenorphine ?


"This all started for me on May 20. Stopping methadone. Since then, I've only taken Oxycodone 5 mg four times during the last 32 days. I choice those days when I needed to function the next day. On the Mirapex night I tried a sleeping pill more often atfer the withdrawal was over with the Methadone. Still didn't help. It's a short term fix.
I have tried ropinirole. It augments faaster than Mirapex. My insurance would not cover Neupro. Too expensive. Plus have addicton issues. I'm planning on presenting her with the seminar. I'm thinking I will end up with Oxycodone or methadone. I hope. Then with bupreorphine it is too expensive and too strong. But I planned on talking to her about all of them.
I think I finaly got a little sleep. It's hard to type with legs going and I'm seeing double.
I still don't have the new bipap machine. That would help.