[Treatment] Central Sleep Apnea at high elevation

[shallbreathe]

@SBHill I hope you've been able to reduce your centrals...how has that been going for your?

Just my experience with altitude and using an O2 concentrator so far, for anyone who's interested. I'm in Colorado.

History: was struggling with 48AHI obstructive apnea and minor centrals according to home sleep study. I experienced major issues adjusting to CPAP and BIPAP, and while I was struggling with these machines for approx 3 months, I lost some weight and started doing various non-CPAP related therapies, and my obstructive apnea seemed to have disappeared or lessened dramatically. I am, however, still struggling with what seems like centrals or some type of altitude-related sleep issue. I frequently wake up on the verge of sleep because it felt like I would just "stop" breathing. And then only being able to sleep 2-3 hours a stretch.

Have not tried ASV yet because of expense and reluctance for the provider to prescribe it to me (still wants me to try CPAP/BIPAP for a few more months), and also for the fact I may just move to sea level at this point due to sleep issues. My recent visit to the coast was astonishing. The first time I visited (the height of my obstructive apnea), the altitude didn't seem to make a difference at all (unsurprising since my tongue literally felt like it was choking me, and altitude wouldn't make a difference with that) but 3 months later, after my obstructive apnea reduced/disappeared, I slept GREAT at sea level. The best I've slept in a couple of years. At sea level, I'd sleep through the night for at least 6-7 hours at a time, and on days where I didn't, I'd only wake up once to use the bathroom and I'd immediately fall asleep again, without lying in the dark and wondering why I didn't feel sleepy for 2-3 hours. It was blissful sleeping at sea level, but also disturbing because my body seems to be clearly telling me to move. I love living near mountains so it's a bittersweet message.

In the past few months, I've also experimented with oxygen concentrators, inspired by @knuddr's helpful posts. One was a Caire. Tried it about 3 times before giving up. Felt like it gave me a surge of energy, which is great for every situation that DOESN'T involve trying to fall asleep, haha. Insomnia all night long.

Because this was during the height of my struggles with obstructive apnea, CPAP/BIPAP, and an array of sleep meds, there was a lot of chaos going on and now that my obstructive seems to have vanished, I thought I'd give the concentrator one more go. Recently got a hold of a Devilbiss 5L last night and just tried 1L overnight but experienced the same issue. Lots of energy and tons of insomnia. Couldn't fall asleep with it at all. Finger oximeter was reading at 99% at 1L, so turned it down to .5L and was at 96-97% but wired and awake. I might try melatonin tonight to see if it gets me over the "hump" of the initial insomnia, but am a bit reluctant because I've had a wonky relationship with melatonin in the past.

I really don't know what to do at this point other than throw in the towel and relocate. My body seemed like it was fairly functional in the earlier years of living at altitude, but it seems aging(?) has made it less and less viable to live here. Even if I CAN get a CPAP/BIPAP/ASV to work at altitude, it seems like a very clear solution is sitting in front of me. That even if I still have apnea, I should probably get a machine and use it at sea level for optimum sleep since so many of my issues cleared up immediately. At sea level, I fall asleep without having that "jolt" that immediately wakes me up. And I stay asleep. Right now at high elevation, my sleep is very staggered...just 2 or 3 hours sessions at a time, and I seem to be "wide awake" every time I wake up so it's a real pain trying to fall asleep again.

I really wish the suppemental O2 worked for me since it feels easier to use than CPAP, but I can't seem to get over the energy surge it gives me enough to fall asleep with it on.

Edit: and I shoud mention that I did try the supplemental O2 WITH CPAP, but it just seemed like it exacerbated my insomnia twofold.

[TechieHippie]

From your description those episodes can be obstructive or central. I understand the feeling, I was surprised mine were obstructive. I'm in Colorado and also don't have apnea at sea level.

Not a doctor, but helped my dad manage his oxygen for quite some time - I have two thoughts on the oxygen - one is to try some supplemental 02 during the day for a several days to a week, to allow your system to adjust to it, and to see how it effects your nights. I wouldn't be surprised if daytime oxygen also helps the nighttime somewhat. Do you have a continuous pulse ox for overnight? If you can they are very helpful. Mine's a SleepU from Wellue.

If that doesn't work (or in addition), maybe you can go really low, like to .25L either at bedtime or perhaps an hour or so before bed. If you ever nap, you could try it then.

[knuddr]

@Shallbreathe I feel like I'm talking to myself in a mirror here, we have had such very similar experiences except for the insomnia. Once I put in the nose cannula I'm basically out. I'm generally wiped out most days from work, stress and my oxygen is generally low which may play a factor though all indicates health-wise heart/lungs, etc are all good. I use 2L which keeps me around 95-96% all night. 99% is definitely way too high! Try to keep it lower if you can. I generally use a continuous flow at home but when I travel in the mountains and while camping I use a pulse. Maybe a pulse would work better for you at home, it definitely feels like less volume overall. Takes a bit more getting used to though, in my opinion. At home I use the "Inogen at Home" model and traveling the "Inogen One G5" they both work great for overnight for me (but doctors won't recommend the G5 for overnight cause its pulse). The G5 runs on batteries which last about 7 hours and is perfect for camping (I have 2 batteries so can last 2 nights out in the wild at a time). I only use the oxygen, no CPAP, and everything is working great. I can't tolerate a CPAP and thankfully don't have to.

I'm also in Colorado, and at sea level I've always been good. Although lately, the last time I went back it was a bit worse.. I wonder if somehow my body is getting more "lazy" while on oxygen. I don't weigh more, but I'm out of shape for sure. The body is designed to save calories in every way possible, so maybe by using oxygen I'm gradually making things worse overall.. It's just a suspicion, I have no data about that yet. But something I'm carefully monitoring now. I may also move back to sea level in the near future. My personal next steps are to knock off about 30 lbs. I'm at 30 BMI and trying to get insurance to cover Zepbound, a friend of mine has had great success with it. Slowly ramp up some exercises and see how it goes over the next 6 months.

I'm super curious about how you achieved eliminating your obstructive apneas? You mentioned non-CPAP related therapies. Losing weight I can definitely get. You also mentioned reducing congestion and phlegm? I've noticed with oxygen I get really hard congestion, things just dry out, which sometimes will wake me up in the night (clogged nose). Have tried a lot of nose cleansers before sleeping, hit or miss. I'm wondering if its worth seeing a "nose doctor" to see if something is deviated or something, and not allowing drainage properly. I know little about this area of the body so far

"I frequently wake up on the verge of sleep because it felt like I would just "stop" breathing" 
Same feeling I had every night yeah, pretty terrifying. I have the O2ring on most nights and it alerts by vibration when you're really low sp02. It used to go off continuously throughout the night.

Keep in touch! Would love to hear about your continued successes and failures

[SarcasticDave94]

Maybe request your doctor decide on ASV sooner. Or perform a fire and replace ASAP. Torture or treatment, which sounds better?

[CLCCW]

Glad to have found this thread. Another Coloradoan, here, but been here nearly 40 years. Born at sea level. I'm 64. No CHF. No high BP. Exercising. Yet sleeping at altitude has ALWAYS been rough for me (e.g. even as a young person camping in the high country, for example). Now I seem to be CSA predominant, diagnosed with "complex sleep apnea" in the lab and home test. Mostly Centrals. And now harder to sleep at 5,350 feet.

Have an AirSense 11, and after a week in, starting to see some decrease in AHI, but still around 8. Random Cheyne Stokes breathing here and there. Like many on this thread, I sleep so well at sea level. I will be going to San Fran in January, so will be curious about my numbers and how I feel, there. Will bring the machine, too.

Before my dx, I had daytime drowsiness, which is what spawned the testing. Also have had increasing wakefulness and sometimes at 4am could just "get up." I thought it was just age/post-menopause stuff. (And I, too, have had that fall asleep in seconds but pop awake immediately sensation for a while, now!) My snoring cat and spouse also can keep me from sleeping, so I added earplugs to the APAP and I feel marginally better. BUT I messaged my doc about ASV as a next step.

Keep us posted. I'd love to know more about research in this area, too (higher altitudes that affect some people regardless of comorbidities or fitness).

CherylW

[knuddr]

Hello fellow Central Sleep Apnea / Colorado friend! I'm going to Florida for a few weeks in December, can't wait to get back to sea level as well. I'm really curious to know if the oxygen concentrator has been affecting me more permanently, making me more "lazy" wrt breathing. Also having a lot of daytime drowsiness, been measuring my SpO2 now during the day and see it frequently at 90, but generally stays around 93. I sit all day for work so definitely a factor. Either way it'll be great sleeps ahead! Thanks for sharing your story