I've had RLS for over 5 decades now, and have survived by changing drugs when each one has become ineffective. The latest drug--a semi-opioid called buprenorphine--has been the best! However, I now have central sleep apnea greatly interfering with sleep. I wake up tired and am tired throughout the day. Be aware, everyone, that central apnea is when the brain fails to signal the body's autonomous system to breathe. A person either breathes very shallowly, getting insufficient oxygen, or pauses inordinately long between breaths--again getting insufficient oxygen. I write this because one of central apnea's main causes is opioid use! And opioids are what I've been taking for almost two years now. I have augmented out of most of the other drugs for RLS. I am trying now to get off the buprenorphine for the RLS, despite its effectiveness that lasts all through the day, in order to hopefully get back to breathing normally at night. I am trying the Neupro patch, despite its drawbacks, because there are drawbacks to every drug, and I really, really need to get enough oxygen when I sleep.
I am also wondering if anyone else has had this experience, and if he/she has figured out a way to alleviate some of the sleeplessness that comes with not breathing properly at night. I wonder if daytime breathing exercises would make any difference. Is there any "voice of experience" out there?
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grandpianoman
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You may not be able to say for yourself whether you have sleep apnoea or not. It needs somebody else to observe you while you're asleep.
Apnoea literally means you stop breathing.
In addition how severe the apnoea is needs to be monitored by an oxygen saturation device.
There are mainly two types of sleep apnoea, that is central sleep apnoea (CSA) and obstructive sleep apnoea, (OSA)
CSA is associated with the respiratory control centres in the brain. OSA is due to an obstruction of the airways which prevents air getting into (or out of) the lungs.
CPAP stands for Continuous Positive Airway Pressure. This typically has a mask that goes over the mouth and nose and uses a pump to create a positive air pressure pushing air into the lungs which can overcome the obstruction.
I don't know where you live but in the UK I don't believe you're supposed to be able to buy a CPAP machine without a prescription. I do see they're advertised though. The least expensive appears to be at least 300GBP, some can cost thousands.
If you really need one you can get one on the NHS for free, but you would have to have a confirmed diagnosis. This means attending a sleep clinic.
CSA is less common than OSA and a CPAP machine is of little use.
There are many reasons why you may wake up feeling tired.
If you have RLS then it is associated with sleep apnoea, so you may have that. Another factor is that 80% of people with RLS also have PLMS which can create poor quality sleep. Howver it could be something else.
You might not know if you sleep on your own, you need to be observed by somebody to see if you have OSA or PLMS. Otherwise you need a referral to a sleep clinic.
What's nice is that the latest versions of CPAP machines are actually AutoPAP machines, in that they sense your level of breathing and automatically increase the pressure of the air flow in order to open your airways. You may not even be aware of your lack of oxygen as you sleep, but that lack increases risk of stroke and cardiac events, not to mention headaches, fatigue, depression, etc.
What I read on warning labels for opioids is that they cause "breathing suppression"--which I interpret or understand to be apnea. (Same for marijuana and gabapentin--breathing suppression) Fortunately, not everyone gets this outcome, but I am just letting others know what I've learned.
I don't seem to fall neatly into either obstructive or central apnea, but what I do know is that I stop breathing at times and at other times, breathe very shallowly, so that oxygen levels drop into the 70s and 80s, which is definitely bad news. I have been taking buprenorphine, after having tried Tramadol and Oxycontin. Buprenorphine, a derivative of morphine, is classed as a quasi-opioid, and has worked wonderfully for me, but the apnea is of sufficient concern that I am now trying to get off any opioid. Am trying the Neupro patch for the first time; have tried and either augmented out of everything else or couldn't handle it in the first place. Am needing to supplement with buprenorphine till I can get doctor to prescribe larger dose, but am getting through the night.
I appreciate your position. It's not clear if you have CSA or OSA, it's possible you may have both.
I'm not sure if a sleep study would help clarify that.
Opioids can cause respiratory depression which is not the same as apnoea. Apnoea is the cessation of breathing. If enough opioid is taken then it could cause apnoea, but I wouldn't think low dose buprenorphine was sufficient.
It is worrying that your oxygen sat gets so low. If it is the buorenirpine that's the main factor in this and previously the tramadol and oxycontin, this is a real shame as the opioids may be working for your RLS. What a dilemma!
Whether a CPAP device is appropriate or not depends on whether the main problem is CSA or OSA.
I'm only guessing but for CSA you'd possibly need something similar to a postive pressure ventilator.
I hope it all gets clarified for you and you get the.most effective treatment.
Thanks, Manerva. I've had a sleep study. The results were mixed--both obstructive and central apnea. The follow-up disastrous attempt at a CPAP titration almost closed the door on any remedy, because I couldn't tolerate any CPAP at all. I suspect now that it was "operator error" in giving me too much pressure. Fortunately, a friend loaned me a CPAP machine, and I learned that if I could start the air pressure quite low, I could rather quickly tolerate the needed higher air flow rates.
I honestly don't know the cause of my apnea, so I am eliminating, if possible, any opioid in case that is the trouble-maker. If that doesn't work (and I do miss the wonderfully working buprenorphine), then I'll try something else as soon as I learn what else to try.
You said something that has caught my attention. You said that "respiratory suppression" caused by opioids --or rather, "respiratory depression," as you stated it--is not the same as apnea. How do they differ causally and symptomatically, please?
The obstructive part as I guess you already know is due to a mechnical blockage of your airway e.g. such as your soft palate falling down.
The central part is a problem with the respiratory centres in the hindbrain.
When these centres are not functioning properly e.g. due to being inhibited by a drug, they will not be sending messages to the diaphragm and intercostal muscles (breathing muscles) . This may mean that breathing becomes slower and more shallow. You mentioned shallow breathing. This can happen any time of day.
If severe this can lead to a pattern of breathing where it stops altogether, then starts again.. This is known as Cheyne Stokes.
When the respiratory centres send no message at all, this causes cessation of breathing i.e. apnoea. If breathing doesn't start again, this is respiratory failure.
It's not just opioids that cause respiratory depression, other sedating drugs can too. Other causes include heart ir kidney failure, stroke or parkinsons disease.
Further, just to clarify, using an opioid doesn't always necessarily lead to central sleep apnoea. In addition, I can't say with certainty, but I get the impression that most people with RLS do not take opioids.
RLS is associated with sleep apnoea, usually obstructive. The OSA is a factor in the RLS, not the other way round.
I would imagine then that the majority of people with RLS are at little risk of suffering central sleep apnoea.
Irrespective of taking an opioid, CSA is often due to an underlying health condition.
Hi grandpianoman, the fact that you have managed to navigate a way through this terrible condition for so many years is inspiring to me, I wish you well in your latest challenge. Would it be possible to shed some more light on your drug switching strategy where you have been swapping ineffective treatments out for others? I'm thinking that it might be possible to avoid augmentation and tolerance buildup using this strategy as well as maintaining relief from RLS. Being able to share your experience would be amazing.
Hi there. I’m currently having the exact same issue with buprenorphine. I can feel myself stop breathing and then I wake up gasping or with a full body jolt from my body to wake up. I have a CPAP machine and have been turning up the pressure to no avail so far. I definitely hear what you are saying about getting a little more sleep but feeling more tired during the day from a lack of oxygen at night. Such a bummer that there isn’t a silver bullet for us 😢
It is a bummer but I can offer a little bit of light at the end of the dark nightly tunnel. I have complex apnea--both obstructive and central. My sleep study showed that I didn't tolerate CPAP well (perhaps because of the central apnea, for which CPAP is useless), and it took a while for me to get a doctor to prescribe a machine so I could try it at home and get used to the pressure. Until then, I learned that I slept better on my sides rather than on my back (fewer desaturations). I even bought online a huge U-shaped pillow used by pregnant women to help keep me on my sides. But even then, my fingertip oximeter showed oxygen levels in the 70s and 80s. So I reported that to my excellent doctor, who prescribed back-to-back overnight oximetry tests--one with oxygen, one without, sleeping only on sides (friend loaned oxygen tank)--to determine what was really going on.
The tests showed a definite improvement (reduction in desaturation events) WITH the oxygen. The problem here in the US is that Medicare will NOT approve oxygen concentrators when the diagnosis is apnea! Only CPAPs. So ... I bought a big tank of oxygen, such as welders use. That was helpful--flow, not pulse--had reduced desaturation events--but lasted overnight only 6 days, and then had to refill for almost $30 each time. That was a problem, since I live in the country, so ... at my own expense, I bought the best oxygen concentrator I could find: the InogenOne G5.
They are not cheap. I found two vendors; both knew I was going to make a decision that day. Each one dropped the price a bit, but each basically offered all the same advantages, which fact I stated to one of them. That vendor dropped the price another $300, so I bought from him. William Rogers at 1stClassMedical. Total price with 2 batteries and lifetime warranty: $2495 USD.
I finally now have a CPAP (autoPAP) machine which I have been trying to get used to, but I haven't worked out the kinks yet, and maybe I won't be able to. I'm trying to determine which is more helpful for whatever's going on with me--CPAP or oxygen concentrator. Which drops number of desaturations better? The CPAP seems to cause such severe nasal congestion and drainage that I wake up coughing from it, whether I use humidity or not. Still working on that. BUT! When I have to put the CPAP aside at night, I switch to the pulse oxygen concentrator (nasal cannula, not mask) and I do much better sleep-wise. I sleep with an oximeter on a cord around my neck to monitor oxygen levels, and sometimes the reading will drop into the mid to upper 80s, but usually not. So far, it is the best solution I have found--that, and sleeping on my side, somewhat propped up at times. I wish the machine were flow, not pulse, because I don't breathe regularly, but I haven't found one suitable yet.
And I'm still searching for how to get off all the drugs for RLS because the CPAP doctor told me he's known people to "recover" from apnea once they went off opioids. That's why I'm trying the Neupro patch, but after that, there's nothing left except to go back to opioids.
Hope you or someone else found this useful. Blessings to all. Love this forum! So helpful!
This is extremely useful information. Thank you very much for taking the time to explain it. I may check in with you periodically to see how you are fairing if you don’t mind. I will do the same if I find a good solution with a setting on my CPAP. Blessings to you as well 😊
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