Restless Legs Syndrome (RLS) Discussion Board

Anyone one have problems with Methadone and central sleep apnea?

This is something that concerns my doctor enough that she ALWAYS asks me to verify that I am still using my CPAP machine. I live at 6000 ft of elevation, which can also increase centrals. My doctor has also refused to prescribe a few other neurological meds to supplement my methadone based upon her concerns about causing additional centrals.

I had that issue. I was at 8,000 ft altitude. I have moved to 5,000 ft. I also weaned off the methadone. New Doctor didn't want to prescrib it.
I still have central sleep apnea, but it has improved. I'm on other meds plus a spinal stimulator. I manage most of the time with occasional bad nights.
I take Gabapentin 1800 mg, 1 tramadol and 1 tizanidine all at 7:30.
It's a balancing act. Good luck.

Even before opiates I had complex apnea (mix of obstructive and central) but they definitely made the central issue more pronounced. I had to switch to an ASV cpap that is specialized for central sleep apnea but that seems to have resolved the issue and my AHI is below 1 every night. If you do get an ASV make sure to have some gas x on hand because it can jam a lot of air down your throat very quickly.

I have “severe, treatment resistant RLS” I’m on Methadone, had 2 sleep studies. Dr said I have “severe, severe sleep apnea.” Then he fired me. He said he is required to be my doc for 30 days. I have 21 days left, and I am so scared bc even tough I have called many docs, none have experience treating severe RLS OR using Methadone. Anyone?

Your doctor probably did you a favor by firing you, because he doesn't know enough to properly treat your RLS. This is especially true of an RLS patient on methadone who also has severe sleep apnea.

Normally, I would recommend trying some of the other neurologists or sleep doctors in your area, but in your case, I would strongly recommend getting an appointment at one of the Foundation's Quality Care Clinics. Yes, that will require travel, but the difference in the quality of the care you get will be dramatic. The only catch is that the waiting time will be more than a month. But I would explain to them that you are a methadone patient and your doctor just fired you. That might convince them to at least give you a short telemedicine appointment so that you don't run out of pills before the appointment.

Did the doctor at least write you a prescription for a CPAP machine? If not, ask to get one before your 30 days is up. Also, make absolutely certain that you get a refill on your methadone before the end of your month.

Thanks Steve I will look into the quality clear clinics.
I did get a prescription refill. It’s a little scary because I have been on the phone for quite a few hours calling all the doctors at my insurance company says it would cover, but those doctors either aren’t available until July or they never heard of using Methadone to treat RLS.

There are two publications that you need to have on hand and both are publications written by RLS experts and published by the Mayo Clinic.

The first has to do with the use of opioids to treat RLS:

https://www.mayoclinicproceedings.org/a ... X/fulltext

The second is a recently written document that describes the proper treatment algorithm for treating RLS and of course, it also covers opioids.

https://www.mayoclinicproceedings.org/a ... 0/fulltext

Jumping in here (tiredgrammy is my mom) to note that she did see Dr. Buchfuhrer in CA late last year. Only issue is he cannot prescribe medications to out of state patients. Do we know if that is a CA-specific thing? For example, if she went to Mayo (nearest to us in Chicago) could they prescribe to her living in Illinois?

Thank you!

The rules for prescribing out of state vary from location to location and also they vary with time.

During the pandemic, the rules were loosened considerable and many states allowed doctors in neighboring states to prescribe meds, including controlled drugs. As things from the pandemic start to return to normal, some of these special rules are changing and some are not. For example, it appears that telemedicine appointments are here to stay (Hurrah!).

So, whether you will be able to get a doctor in a state near Illinois to prescribe her methadone is something that you will have to research for yourself. You might start by calling your GP and ask them if they can prescribe for a patient in Indiana or Wisconsin.

Another thing to try is to ask your GP if he/she would be willing to write methadone scripts under the guidance of an expert, like Dr B. My RLS doctor is over an hour away, so I am fortunate in that my GP is willing to write my methadone prescriptions so that I don't need to spend a day driving to my neurologist each month just to pick up a piece of paper.

And if it would help persuade your GP, there is a publication that discusses why opioids are appropriate for the treatment of RLS. You can find that publication here: https://www.mayoclinicproceedings.org/a ... X/fulltext

And just so that you know, Dr B has a history of being willing to call and talk to other doctors (especially GPs) to educate them in the treatment needs of RLS patients. Maybe the combination of the publication and a call from Dr B would be enough to save you from calling every neurologist in metro Chicago.

Oh this is extremely helpful, thank you so much! Her PCP isn't licensed to prescribe opioids but sounds like it could be in her best interest to find a new PCP for this. Thank you again!

Dr. B worked with my GP in rural Illinois, as well as a GP and a neurologist in Chicago. Unfortunately, the GP is retired, the GP in Chicago got cold feet after a year and fired me, as did the neurologist. I'd seen so many doctors by that time (over 30), that I just moved to be close to Dr. B. I realized we all cannot do that . It was terribly frustrating, so I feel you pain.