[Treatment] Central Sleep Apnea at high elevation

[knuddr]

Closing up this thread for me personally --- I was able to convince my doctor to give me an overnight oximetry test, and I was able to demonstrate an oxygen level of 88% for about 2 hours overnight, convincing my doctor to prescribe supplemental oxygen at long last! It required a lot of effort and work to convince her, maybe she just wanted to finally get rid of me hah. Insurance would have none of it though, and won't pay for any of the equipment. That's fine. I received a rental on Monday and will look into a purchase soon. Something more quiet and possibly portable for summer camping nights.

Immediately all apnea events disappeared just using a nasal cannula. I skipped the CPAP although my doctor wanted me to continue using it. It's just not necessary for CSA in my case (see the attached). ~95% SPO2 the entire night. Without, and even on the CPAP I'd see anywhere between 30-300 drops a night with SPO2 levels around 90%. I can also sleep on my back with oxygen (and did in the attached) while on a CPAP it would have the worst results.

Quality of life is definitely making a huge improvement! I hope there will be more studies about CSA, and that it shouldn't always be treated like OSA. I bet there are a lot of others like me, who transplanted to Colorado and are undiagnosed or stuck on a CPAP. If you have any ideas on how I can make more people more aware, or challenge the system let me know. I want to keep helping!

For me, my journey isn't done though. I'm now going down the rabbit hole of learning how to retrain my breathing, increase oxygen capacity and maybe one day get off of all machines entirely!

Thanks for all of your support

[Mugsy]

Hi there.  Now living at 8k and experiencing same issues.  CPAP at night has little effect on overall SPO2 levels.  I am trying to stay off supplemental oxygen but after reading your posts it may prove necessary.  

I also looked into O2 management systems for sleeping and decided $$ would be better spent elsewhere.  Would be curious what O2 machine(s) you end up with as I am doing the same research right now.  Insurance just wants to rent me a machine and I want to purchase one outright.

[knuddr]

Did your sleep study conclude you're mostly having central sleep apneas? Traveling around Colorado I discovered my problems only really started to occur over 4300ft. Funny how it works when you drop down a few o2 particles.

I've been using an Everflo OPI rental this week, only two nights. It's a decent enough machine, not overly loud (but certainly takes getting used to) and I'm at 2L/min setting to get my SPO2 up to 95-96% while sleeping, from roughly 90%. The neat thing is it also completely eliminates my apnea events and raises my SPO2 at the same time. I just received (and purchased) a new Inogen One G5 today, it's a portable unit with pulse so not CPAP compatible. I wanted this so that I can travel/camp and still get oxygen, battery can last 10 hours and I bought two of them (the double ones). I can't vouch for it yet but it seems interesting, and given I don't need a CPAP (no obstructive) it should work for me. These guys had a good sale on it: https://oximedical.com/ and were based in Denver, so got the unit within a day.

The system I rented last year to prove oxygen eliminated my central sleep apnea is from these guys: https://www.higherpeak.com/store/p46/den...ystem.html they can rent them monthly or purchase without needing prescriptions and whatnot, given that they're designed to simulate higher elevation not lower, and aren't certified as medical devices. But it worked in a jam and gave me the ammunition to pester my doctor until she'd sign off on one. It's quite loud but it was kind of fun sleeping in a tent for awhile, just got a bit hot

[Mugsy]

Would have loved to see results from an in lab study.  Doctor ordered a homes study as no close place for overnight titration study that was not booked out for months. 

I now have low AHI with CPAP (0-1 most nights) and nearly all are OA with a rare CA.  O2 levels average 88% with fairly frequent drops and spikes.  Starting to think most of my issues are positional although I never sleep on my back or stomach. 

G5 is the one I am eyeing for camping and raft/fishing trips. Will most likely need a daily banger though too.  If the supplemental O’s would replace CPAP on overnight trips that would be amazing. 

We may just return to the coast.  The breathing thing has kept from high mountain sledding this year so my new Skidoo is just gathering dust.

[knuddr]

Sounds like you're dealing with the exact issue I've been, where events are only central. I have absolutely no problems at sea level as well, have wore an O2Ring at 6 different locations now (California, Canada, DC, NYC, London, Italy) and no drops, SPO2 stays around 96% at night, perfect straight green line across the graph. I snore, but no reported signs of obstructive events. I'm a side sleeper as well.

I love the mountains so much which is why I'm fighting it. I've been in Denver for 2 years now so "adjusting" just doesn't seem to work for me. I'm a believer we can retrain our breathing though, that's the next phase of my journey. Supplemental oxygen will get me back to sleeping well, rested, and then I can focus on improving air capacity in the lungs. I suspect I'm a shallow breather, my body has only done the bare minimum required to breath in the past which didn't require much at sea level. My wife and friends have adjusted though, so I'm sure its possible. She's more athletic than I am though

Have you measured your SPO2 during the day? 88% is very low if that's the case. I get by around 92% during the days, I do suspect it affects me, makes me tired during the day but it's manageable. I might just try using the machine during the day for a week and see how it makes me feel. Why not right?

I'd love to hear back if you do choose to try supplemental oxygen -- and do it without your CPAP and see!

[Mugsy]

Daytime O2 at 8k is 92-93% with normal being 94-96%.  On the Or, WA or TX coast where I have tested it runs 96%+.  Kicker is nighttime 02 runs 92-93% with occasional dips to low 80’s.  Interesting thing is they redirect quickly at low altitude but in the mountains they take a while meaning a possible low sat level for 30+ minutes. 

We dig the mountains too and just hit a year here.  Plenty of time to acclimatize but just not happening for me.  Interesting side note - my wife has low iron and takes medication.  Low altitude, no real issues other than taking the medication to supplement. Higher altitude, low energy and low O2 sat levels as her blood cells cannot pack in enough O’s. 

Just wanted away from the coastal rain but it’s hard to believe thin air can be such a drag. We have vacationed, snowmobiled and fished up to 12k for many years in this same area.  Never had an issue after a couple weeks at altitude.  Getting old sucks mate! :/

[Sleeprider]

Knuddr, thanks for following up to report your results with supplemental oxygen. As I suspected, it probably reduced your need to hyperventilate and that balanced CO2 to avoid the CSA issus. So supplemental O2 may be all that you need. I would not stop looking for a doctor that can competently prescribe oxygen based on your tests and results, and fight on your behalf for reimbursement by insurance. You seem to meet all of the criteria.

[knuddr]

Thanks for the support Sleeprider! Yeah, that's on my list -- finding someone who's more interested in fighting with the patient. At least the supplemental oxygen machine & equipment are fairly inexpensive compared to the CPAPs which require masks/hoses/etc changed very often. I can get a box of 50 nasal cannula's on Amazon for $20 bucks

@Mugsy results back using the Inogen G5 with pulse oxygen weren't overly promising. It was only a single evening, so I'd like to experiment more, although the return policy isn't super great, you have 7 days BUT only 12 hours of total usage allowed, so really only 1.5 nights. I'm consulting with the company and thinking about exchanging for the Inogen At Home stationary machine which can deliver continuous oxygen and also supports humidifying the air. Maybe I can convince them to allow for longer testing, or if they come with a really great deal for the At Home model I might consider having both. The G5 hits 100% of my Wants (camping), but the At Home actually achieves 99% of my Needs. Nothing is ever easy is it

Here's the details about last night:
- First graph was using setting 3 on the machine which was a bit aggressive, I was mostly stable all night except a large dip around 1am (ignore the times on the graph my o2ring's clock was wrong). I woke up with a very painful sore throat and I found pulses from the machine really strong
- Second graph I changed the setting down to 2 which was a lot more pleasant, however as you can see it didn't keep my spo2 stable enough at that pulse rate. I still woke up at 6am with a sore throat and headache. A glass of water mostly fixed it, but still felt very tired.
- Third graph with solid green line is what it looked like with continuous oxygen using the Everflo non-portable machine. No sore throats those nights but my nose did dry up a bunch (currently not humidifying the air)

[GaspForAir]

Following this with interest because I too live in Denver with CSA. I have a very hard time using CPAP because it wakes me up at night (and I have an ASV machine). Mostly here to say I know your frustration with doctors pushing CPAP without a lot of scientific knowledge of the problems and possible alternatives. If you come across a good clinic or doctor in the area, please post it here!

[knuddr]

Hey friends!

It's been awhile so I thought I'd take a moment to drop in and give an update on things and pass on new learnings I've made. The most immediate concern I have is that I recently took a trip to California for a week at sea level. All previous trips that I monitored my SP02 at sea level (NYC, DC, London, Montreal, etc) showed almost no drops, no sleep apnea issues. This trip I did start to see some drops -- I saw ~33 drops in a night at first with the worst night being 120 drops. That was unheard of before for me! Just to note I don't bring my CPAP on these trips because its not been necessary in the past.

Clearly, my health is declining, and possibly lungs are getting weaker. My personal leading theory is the CPAP has been making me weaker. Granted, I have gained some weight in the past year (~10lbs) and while I wasn't in any way athletic before, I'm probably in a bit worse shape since those trips. But I do feel like the CPAP does make for lazier lungs as it does the breathing for you at night right? And I just started on the CPAP a year ago (January 2021)

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Anyway, lets put that aside for now and talk about how things are going with supplemental oxygen -- GREAT! I returned the Inogen G5 and instead purchased an Inogen At Home model (funny enough after all the work I went through with my doctor --- they didn't even ask to see my prescription!). it's continuous airflow and has been much better at stabilizing my SP02. I'm happy to report I am regularly sleeping 8 hours a night without interruption and only a handful of drops (~5 a night). I'm generally at 2L/min, and see avg 95% SPO2, but I've also reduced that down to 1L/min to see, and it also held my SP02 around 93% with no drops. 1L/min was more pleasant because being on supplemental oxygen does have some challenges, where higher rates do lead to dry noses / nose bleeds / sore throats. I'm going to keep it at 2L/min for now but may continue trying 1L/min. Also, I did hook up the supplemental oxygen to my CPAP at first and that was a really pleasant experience as well, as my machine heats and humidifiers the air. I do have a humidifier now for the oxygen machine but it doesn't do heating and I haven't found anything capable of doing that yet. I'm going to try some gels and stuff for the nose to hopefully mitigate some of that -- overall its a much better experience for me than being on a CPAP though.

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Okay so my theory is I may be able to overcome CSA by improving lung health, strengthening my lung muscles and improving overall air capacity. I did a bunch of research and initially wanted to try out Wim Hof (minus the ice bathes), I'm a big metrics guy and found a device from a Danish company called airofit that fits the bill perfectly! It has a lot of programs and some very similar exercises to Wim Hof's training. It was a bit of a expense, but trainers for Wim Hof aren't exactly in-expensive either. https://www.airofit.com/ it can also help those with OSA, COPD, Asthma, as well as professional athletes.

It has only been 12 days with the device with daily exercises of about 6 minutes. I definitely see immediate progress and gains! I also feel better and feel like I'm struggling less to breath. I've attached 3 graphs of my progress so far (lung capacity, inspiratory strength, expiratory strength). 

I think I'm on the right track! I'll continue with this program for a month and then try sleeping without any medical assistance and report back in!