Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
debbluebird
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Central Apnea, Methadone Withdrawal, and Other Trials and Tribulations

Postby debbluebird » Wed May 04, 2016 1:41 am

Had my sleep study last night. It went fairly well. I may have slept about 6 hours altogether. Woke up three times. Legs woke me up around 2 am. She said it was the only time that I went into REM sleep. I guess a normal person has the four sleep cycles every hour and a half. So depending on how long they sleep, they may get in three or four cycles during one night. She had me on the bi pap and got me up to the highest pressure, 25 and 15. She said it was on the lower pressures that I had central sleep apnea. She said I am not the like normal case. I guess that when I had the study done the end of December, she didn't have enough time to take me all the way to 25. Needless to say I am very tired tonight. I hope I can fall asleep early, but my legs already started going this afternoon when I was getting sleepy. Took meds early.
I go back to the doctor in two weeks. It will be interesting to see what he says.

ViewsAskew
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Re: PLMW - Or Jerky Legs

Postby ViewsAskew » Wed May 04, 2016 6:22 am

Sounds like a much better study, Deb - that is very good to hear.

For years, I've known that one of my biggest issues was the lack of finished sleep cycles. Since they average 90 minutes if you wake up during one of them, you didn't get the sleep you needed - and likely it was the deep sleep or the REM you missed. I always look at the clock when I awake. If it's at the 1.5 or 3 hour mark since the last time, I figure I am doing very well. If I wake up and it's either less than 1.5 or between 1.75 and 2.80 since the last time, that I did not finish a cycle.

On the nights that I never complete any 90 minute cycles and am fully aware of it, I am rarely very functional, even if I managed to stay in bed at least 7 to 8 hours.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Thu May 05, 2016 3:07 am

That's exactly right. Not being at the correct pressure with my cpap for months and months is the other issue. I did sleep pretty well last night. I'm awake every 2or 3 hours, which you would think I would be able to get in all four cycles, but since I wake up 90 times every hour, everything is disturbed. I'm anxious to hear what the doctor says.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Fri May 20, 2016 3:09 am

Ok, finally saw the doctor today. It seems that I do have central sleep apnea, which means my brain does not tell me to breath, as well as the obstructive sleep apnea caused by my throat closing. He decided that I should be on the Bipap machine. My pressures will be 23 and 19. So on inhalation it will be 23 and on exhalation 19. Since the pressures are so high, I might not be able to tolerate it. So we will see. Higher pressures on just Cpap cause my central sleep apnea to get worse.
If you don't breath you die. Actually you get an enlarged heart and then you can die. My current pressure is 15.5.
There are two causes for the central sleep apnea: taking the Methadone for my RLS/PLM and living at a high altitude, 8,200 feet. I'm going to start taking Gabapentin again and wean off or wean down the Methadone. I feel that I don't have choice. I could move to sea level, which really isn't an option.
The doctor had hoped that by correcting my pressure my RLS/PLM would get better so I would be able to take less Methadone. Since I have such severe sleep apnea that is not going to happen.
I got my sleep disturbances wrong. 90 times an hour was without using a Cpap machine. My current events are 26 an hour.
But it is enough that the doctor is concerned. I can only hope that I tolerate the Gabapentin. It has been a long time since I took it. It would be nice to start sleeping for real and not feel tired.
Oh, I forgot he wants me to get a mouth piece made by a dentist. I can only do that if my insurance will cover it. He gave me the names of Dentists who take insurance for mouth pieces. I just don't know if I can tolerate that plus the mask. There are some nights that I just rip everything off. I can hardly stand it.
Last night my RLS was really bad. I was watching TV, not trying to go to sleep. It started in my arms. They were going crazy. I could hardly stand it. What is weird, it wasn't in my legs. I couldn't sit still. Luckily, after taking a second Methadone a half hour after my usual dose it finally stopped. Then I only had to take last dose during the night. While it was in my arms, the only thing I could do was rub my arms until it stopped.
One last comment. People who live at sea level don't get central sleep apnea. I just hope that my RLS/PLM doesn't get worse.

ViewsAskew
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Re: PLMW - Or Jerky Legs

Postby ViewsAskew » Fri May 20, 2016 4:57 am

Deb - so sorry for this. I hope the gabapentin works.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: PLMW - Or Jerky Legs

Postby badnights » Fri May 20, 2016 9:34 am

Deb - another option might be to rotate among gabapentin and a DA. The rotation would prevent augmentation (hopefully) and the DA might be more effective than the gabapentin. I forget what your previous experience with DAs is. I do hope you can successfully treat without methadone, and see your CSA improve dramatically.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
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Location: Pueblo, Colorado

Re: PLMW - Or Jerky Legs

Postby Rustsmith » Fri May 20, 2016 11:17 am

Deb, an exhale pressure reduction of only 4 is only a little bit more than what your current machine is capable of doing. If you are comfortable with changing the settings on your current machine, you can get very close to your new settings if you set the max pressure to 23 and the EPR value to 3. That would give you a chance to see if you can tolerate the new settings that the doctor is calling for. If you need instructions on how to change your machine's settings or how to get the readouts off of you machine, send me a PM with the make and model of what you have now.

Also, my doctor currently has me on a low dose of methadone (5mg) in the afternoon plus 0.25mg pramipexole, 900 mg of gabapentin and 5mg THC candy 30 minutes before bedtime. That combination is working quite well. I have a few centrals (at 4700 ft), any my totoal AHI is usually below 1. As for the gabapentin, I am on that dose because it usually does a good on allowing me to fall asleep. The THC candy is sort of a time release sleep aid that allows me to stay asleep after the gabapentin wears off after about 4 hrs. I go back to my doctor in another month and suspect that she will try to remove the pramipexole at that time. I have experimented with dropping it to 0.125mg, but did not sleep as well, and that seems to be her biggest concern with my RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Fri May 20, 2016 9:32 pm

They told me I couldn't use my machine at the higher level, that it would cause more central sleep apnea. But what I think you are saying, just to try it for a couple of nights. Right ? I don't know if I can change the setting. I might try.
I took a Methadone 5 mg yesterday morning 10 am, because we were traveling and my leg had started jumping. (usually it's at 5 pm). Then I took 300 mg Gabapentin at 5 pm and another at 2:30 am. I had leg jerks around then, and then they finally stopped. Slept til 9:00 am. But have been sleepy today. Took a nap around 1:00 pm. Took a Gabapentin at 2:30 pm. Plan to take another when I wake up in the middle of the night, usually around 2 or 3 am.
I augmented on Mirapex very badly. I want to see how this goes before I add anything else.
Thanks for all the help.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Fri May 20, 2016 9:37 pm

Tried to change settings without any luck.

Rustsmith
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Re: PLMW - Or Jerky Legs

Postby Rustsmith » Fri May 20, 2016 10:50 pm

There is a trick for getting to the Provider screen that lurks behind the controls over every CPAP machine in use. The trick usually requires holding down several buttons at the same time and often one of these is the power switch. Unfortunately, you have to find the Clinician Manual for your machine in order to find out the secret key combination because it can vary by model. Usually these can be found on one of the apnea discussion boards (which look just like this one, just with a different topic!).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
Posts: 2067
Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Fri May 20, 2016 11:55 pm

Thanks

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Sat May 21, 2016 5:47 am

Well, I'm lying here wide awake. It's 11:36. I can feel my heart beating strongly. I'm sure my blood pressure is up. My husband is asleep, or I'd have him take it. I guess I have moved from fairly controlled severe RLS PLM to even more severe. What happens when you don't sleep? I guess you die. A person can only go about 10 days without sleep. Of course, those of you out there who only get 2 to 4 hours are still here. How long can that last ?
Sorry, I feeling really discouraged and it's only the second night after changing meds again.
I'm thinking that tomorrow I will paint. I guess I could get everything out tonight, but I'm not in the mood. I'm working on three paintings. Two are getting close to being done.
I think I will get up and read.

Edit: I got up to read and discovered that I hadn't taken my blood pressure pill this morning. I took it this evening. So I just took it. I hope this helps.

ViewsAskew
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Re: PLMW - Or Jerky Legs

Postby ViewsAskew » Sat May 21, 2016 9:01 am

Deb - this may not help...could you go through withdrawal? Are you dependent on the opioid? If so, withdrawal could cause RLS-like symptoms. Kratom, for what it's worth, often can help with that.

Hope the blood pressure pill helps you.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
Posts: 2067
Joined: Mon May 21, 2012 3:27 pm

Re: PLMW - Or Jerky Legs

Postby debbluebird » Sat May 21, 2016 10:28 am

I realized about an hour ago that I am going through withdrawal. My heart has felt ok since I took the blood pressure pill. But it is 4 am now and my leg jerks started. So I got up. Haven't slept.
I keep trying to remember why I stopped taking Gabapentin. I'm think it was when I was taking five meds and it was one of them. Or I took it when weaning off Mirapex. I don't think it ever covered my symptoms and I needed to add a second drug. I also think it may have contributed to weight gain.
I'm just going to give it more time to get over the withdrawal. I may not be sleeping for awhile.
I think that when I am able to sleep I will make sure to get into bed and put mask on instead of falling asleep in my chair.
I never took more than 15 mg of Methadone.

ViewsAskew
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Re: PLMW - Or Jerky Legs

Postby ViewsAskew » Sat May 21, 2016 10:52 am

Are you in a state where kratom is legal? If you can get it, it may help with the withdrawal symptoms. Not sure if it will help with severe RLS symptoms, but should help with at least some of them.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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