Too much brain fog to sort this out - heading in right direction or no?

[brainblur]

Hello there. Long time lurker, first time poster.

First, thanks to this community for the countless hours you put in. I am impressed and inspired to try to give back once I ever figure this out and get my life back.

Posting because I haven't been able to figure it out on my own after a year or so, and the memory gaps must stop. I feel I am not able to perform at work, and getting scared. My life is falling apart; I look at one screen and can't remember the next. I forget things so totally, it's like it didn't happen.

My history: the brain fog has gotten so bad over the past couple years that I began to fear it was dementia. (Lost my mother to early-onset, so it's not outside the realm of possibility.)

I started to develop anxiety, which I never had before. Had a (small, brief) panic attack and figured out it all added up to sleep deprivation.

Empowered by this board, bought a Resmed S9 Autoset for Her with very low hours off Craigslist mid... I can't even remember. Let's say mid 2023. I noticed improvement, but not enough. Tried consistently for months, with occasional good solid sleep. (Got into the Clinician settings right away, thanks to this board.)

Decided to finally break down and get a sleep study. Of course that was a mess - they lost my prescription (within the same local massive chain of clinics) and ended up taking a couple months to get in, scheduled, completed.

Confirmed "mild" apnea, "Just over the limit" they said. My brain fog and declining job performance say otherwise.

Decided to splurge with newer equipment to see if there was any improvement, and bought a Resmed Airsense 10 Autoset off Craigslist with ultra low hours in September 2023.

I can't keep the mask on overnight. The few times I've managed to, I've felt better than I did on the S9 even, but I just tear it off while I sleep most nights.

Things I've tried so far:
- I've "dial winged" plenty
- Tried the wide open prescription prescribed after the sleep study, and sometimes it will stay on for a night or two but then I go back to tearing it off in my sleep.
- I tried mouth taping a few nights ago; helped for two nights but I'm back to tearing it off.
- Tried melatonin (currently using)
- Tried nasal sprays (currently using)
- Tried tighter and looser mask settings
- Replacing mask as per schedule
- Use a 7" incline mattress topper to help reduce some of the machine's burden

I can tell the CPAP helps as I'm better with the brain fog and memory gaps than I was the previous year. But this has kept me from applying for jobs that could continue to grow my career.

So please, any advice you could spare to help me get my life back would be so appreciated.

Stats:
Current CPAP: Resmed Airsense 10 Autoset with humidifier
Current mask: Phillips Dreamwear Full Face Mask with heated tubing (newly added)
Female
Late 30s
About 100 pounds overweight
Allergies/daily Zyrtec
Concurrent CPAP testing indicated a possible asthmatic component, so they put me on albuterol inhaler, 2 sprays before bed
Low D, took D supplements and was able to breathe better
Low B12, started B12 shots two weeks ago

SLEEP STUDY:
The apnea index was 2.3. Looking at all apneas, 17 percent were central in nature. The hypopnea index was 3.1.
The nadir oxyhemoglobin saturation was 86 percent, during a respiratory event in sleep.
Per a Philips Respironics Alice NightOne home sleep apnea test, over 466.3 minutes monitoring time,
there were 15 obstructive apneas, 3 central apneas, 0 mixed apneas and 24 hypopneas, for an
obstructive apnea-hypopnea index (respiratory event index) of 5.4.


I'm having trouble with my Oscar installation, will try again tomorrow if I manage to sleep tonight enough to think.

Until then, here is a sample of SleepHQ days if those do anything...


https://sleephq.com/public/21ea6624-10f ... f4447056b5 * A rare night I was able to keep it on; arousals due to sick child
https://sleephq.com/public/291692c1-f7a ... 5f10d4fe7d
https://sleephq.com/public/69fb879b-4bb ... d3ad061c3b
https://sleephq.com/public/c8d411b8-8af ... de0e9a1a99
https://sleephq.com/public/7ecb8769-33f ... 3e0407a417


Tonight I'm going to try min 7/max 10 unless anybody has any better suggestions!! And raise my ramp minimum to 7.

Thank you in advance for any and all suggestions...

[ozij]

Your maximum pressure is too low for when you need it.

Look at the way your flow limitations and snores drive the pressure up to 15 (or - any lower max) and it sticks there, without improving your breathing.
On the charts you posted, these indications of obstruction appear about 1.5 to 2 hours after the machine figures you've fallen asleep. It's also clear you stop therapy (presumably tear the mask off) when the pressure is insufficient.

I would set the machine at Maximum =20. I would set the auto ramp at the highest pressure I could fall asleep with - and aim to get it up to the median pressure.

You sleep report is missing information about the number of oxygen desats, and the time spent at low saturation. The "Nadir" is just one point.

I'd contact the doctor who diagnosed the asthma / allergies ask for a professional all night saturation tracking while you're on CPAP.

If higher APAP pressure will not be enough I'd gradually try to get rid of the EPR, and I suggest getting a titration study, in which they can try out a bi-level machine. Bi-level machines have a higher maximum than the ones you've tried.

[vandownbytheriver]

What happened at 03:20? Did you go supine, on your back? The machine wanted more... you're limited to 12cm... but it looks like your mask fit wouldn't handle it anyway. Try to get off 4cm min pressure... and fit your mask at 12cm if you can.... use the Mask Fit menu item in Settings. Fix those leaks and stay off your back if you can.

[brainblur]

@ ozij

First, thank you SOOOO MUCH for your response.

Oh no, so it looks like I *was* going in the wrong direction, after all.

Unfortunately it looks like I checked for responses just a few minutes before yours, so headed to bed last night with my original game plan.

I did keep the mask on at 7/10 but to your point, not sure if it did me any good then. I'll pull the data and add it to this thread.

I will try the maximum at 20 tonight and also try increasing the ramp pressure. Should I leave the min where it is or increase it also?

Is there an acceptable way to do all night saturation tracking at home? My insurance is not great. I'm guessing a continuous oximeter (if that would work) would be far cheaper than what I would expect to pay, unless you tell me that's probably not a close enough approximation. And it sounds like there is a chance I'll need to save up for titration study. Thanks for the info on bilevel, because I've been scratching my head on when the bilevel is actually an improvement.

Thanks a BILLION!

[brainblur]

@ vandownbytheriver (possibly the best username ever... somehow, I feel more motivated, all of a sudden!)

I am not sure, but there is a chance I did go supine. I tend to and that's when I have problems, as you have surmised and my sleep studied illustrated.

For a while I had luck propping myself up on both sides so that I couldn't roll off my side, but now it doesn't seem to be working anymore and sometimes, in what must be a godzilla-like fashion, I often shake myself free and roll onto my back anyway.

As per your suggestion, I'll go ahead and try increasing the minimum tonight, then, too. Any suggestions on a starting point or just try going up a point a night?

I did try the fit test and I can't seem to keep it on at 12. It just starts popping at the cheeks. Time to try another mask or am I just being a baby about how tight the straps must be?

Thank you SO SO much for your feedback, also.

[Pugsy]

Are you experiencing any nasal congestion?

I don't see you needing a bilevel machine from these reports at this time. Let's see where the pressure wants to go with the max at 20.

Nasal congestion....that question is real important. I will explain in more detail if you tell us you are having some nasal congestion.

[ozij]

Is there an acceptable way to do all night saturation tracking at home?

Yes, and that's what I was suggesting.
Professional recording oximeters can be given to the patient for a night to check for their oxygen saturation. That is neither a sleep study nor a titration.
You can buy a consumer grade oximeter: far cheaper and can give you some basic info. Bur I'd start out with asking my physician first.

I don't see you needing a bilevel machine from these reports at this time. Let's see where the pressure wants to go with the max at 20.

Totally agree with Pugsy.

I did try the fit test and I can't seem to keep it on at 12. It just starts popping at the cheeks. Time to try another mask or am I just being a baby about how tight the straps must be?

The straps don't have to be that tight. When fitting a mask, make sure you try it lying down. Search the internet for mask-fit instructions - start out with the makers site. Some maker have instructions, and troubleshooting points about which strap to tighten for which type of leak. For some masks there's a correct order of which strap to start with.
Do your mask fitting when you're as wide awake as possible and give it some time. Not when you're going to bed and exhausted.
Masks are like shoes: some fit you, some don't, and it may take time to find the one that will do the job for you.
www.cpap.com, who created this site and maintain it have a return policy: you can buy a mask, try it and return within 30 days it if it doesn't fit.
I suppose other cpap equipment sites have something similar.
I have no financial interest in cpap.com - I'm simply eternally grateful for the way the created this forum for us cpap users and let us recommend whoever we want.

[vandownbytheriver]

@ vandownbytheriver (possibly the best username ever... somehow, I feel more motivated, all of a sudden!)

I even resemble him except for the plaid sport-coat.

I am not sure, but there is a chance I did go supine. I tend to and that's when I have problems, as you have surmised and my sleep studied illustrated.

For a while I had luck propping myself up on both sides so that I couldn't roll off my side, but now it doesn't seem to be working anymore and sometimes, in what must be a godzilla-like fashion, I often shake myself free and roll onto my back anyway.

As per your suggestion, I'll go ahead and try increasing the minimum tonight, then, too. Any suggestions on a starting point or just try going up a point a night?

If we can't tame the leaks the rest of this is kinda moot... see below.

I did try the fit test and I can't seem to keep it on at 12. It just starts popping at the cheeks. Time to try another mask or am I just being a baby about how tight the straps must be?

This is key. It will do no good to raise the pressure if you can't stop the leaking... when there's leaking the pressure at the mask and at your airway drops... you're getting less therapy. Tighter is not necessarily better... for most full-face masks (not real familiar with yours) you want it tighter at the bottom and looser at the top... the cushion is supposed to inflate like a balloon and create the seal with the edge. If you curl that edge by strapping too tight you're impeding the function of that ballooning. Fit your mask by leaving the headgear off... set your 12cm pressure... then just hold the mask to your face and find the fit that stops the leaking. Move it all around, see where the problems are... I find myself tugging my FF mask *downward* to cover more of my chin and seal better on my face.... when it works its way up it starts the cheek-farting and I tug it back down.... your situation will be different I'm sure. Find the good fit and try to replicate it with the straps. Leaks are the bane of CPAP, fix this before anything else... V-COM is meant to help with big pulses of pressure to prevent aerophagia, not to help with leaking.

Thank you SO SO much for your feedback, also.

You're quite welcome. We're all here to help... mostly.

[brainblur]

I tried to respond yesterday (and upload my previous day's) but I couldn't get a connection to the forum over several hours.

So here is Thursday:

https://sleephq.com/public/b7540b87-1ed ... 1ca6201fb3

And here is my Friday with big changes to the settings:

https://sleephq.com/public/a3f9322e-35a ... f7a8bbbcc1

Although I got only a fraction of the sleep Friday, with the higher pressures I felt the same amount or more rested than the previous day, so that was a nice surprise. Thanks so much for your suggestions telling me to figure out the leaks and go in what turned out to be the right direction - UP! (Contrary to the rest of my charts, I did not pull the mask off that night - I just went to bed really late - worked very late, I was on a roll - and that was how much sleep I got. I can never really sleep in; I have an annoying internal alarm and am wide awake at 6 or 7 no matter how tired I am. Pre-apnea it was 4 or 5 am!)



----


@ Pugsy

Yes, nasal congestion every day I live. Congestion and... leakage? Post nasal drip? I'm on year round Zyrtec. It doesn't fix it. Benadryl dries me up but unfortunately I'm one of the "wakeful on Benadryl" population and can't sleep but a couple hours a night on Benadryl.

(If it's "sinus rinses," I will say I have tried those at various points in my life with the squeeze bottle. I even bought one of the fancy motorized ones. Nothing seemed to help at all. However, I've only ever used it once per day. From browsing the forum I see some people are using it 2x or 3x a day, so I'm open to trying that.)

Interested to hear where you're going! And thanks for your time.



@ ozij

Will ask my physician for sure. Thank you for the suggestion. I have an appointment in six weeks; worth bumping it up or is this less critical?



@vandownbytheriver

Well, now you've crushed my fantasy, because I was imagining you answering me in a plaid sport-coat. Thanks for the smile - definitely need it while struggling with this mess!

I did run the fit test again and try your and ozij's strap configurations - looser at the top really made a huge difference! I had a hard time believing it but just trusted the process and darn if it didn't balloon right up and handle the higher pressure nicely. And the downward-to-avoid-cheek-farting (haha)... but why don't the DMEs tell you this when setting you up??? So thanks for rescuing me with those tips.

So the improved mask fit was my few hours Friday...

---

Any thoughts, fine folks? Any tweaks to try tonight? I'm going to try to turn in early and will leave the settings same as last night unless someone suggests something else

Appreciate you all beyond measure.

[Pugsy]

These machines will increase the pressure in response to OAs, hyponeas, snores and FLOW LIMITATIONS.
The reason is because the machine will try to prevent OAs and hyponeas from happening.
Snores and FLs are early warning signs that the airway is trying to collapse. FLs and snores can also disturb sleep or cause arousals/awakenings.

Here's the deal when someone has much nasal congestion.....the machine thinks the reduction in air flow from the nasal congestion is the airway trying to close off but the machine's response of more pressure isn't going to help the nasal congestion. So the machine will try but it isn't going to be able to do much with the FLs that are from nasal congestion.

So your machine keeps increasing the pressure trying to kill the FLs but more pressure simply won't help reduce the congestion.
Sometimes that increasing the pressure can actually cause more problems and when it is fighting FLs with more pressure it won't be successful in terms of reducing FLs but it might cause problems with leaks above a certain pressure or even cause aerophagia.

Sometimes we do better if we don't let the machine go trying to kill those FLs. It's not going to be successful and it could potentially cause a bigger problem.

I think limiting the max pressure might be a better option than letting the machine go wherever it wants .....in this situation especially since you have leak issues at higher pressures.

[brainblur]

Ok, that makes sense. Where would you suggest to start for an upper limit? And any suggestions on battling the congestion?

Did not have a great night last night, but managed to keep the mask on again. Woke up to weird noise from the machine, 6:17 am approximately.

https://imgur.com/a/OKihJ1h

It sounds like my old S9 in this clip! The noise at the end was the air popping through the cheek of the mask, not snoring or anything else. I normally can't hear the inhale/exhale like that. I turned the machine off and on, and then it stopped happening.

Problem with machine?

Last night's results, with the machine weirdness at 6:15ish AM
https://sleephq.com/public/a00f1b46-747 ... b615001280

Thanks in advance, all!

[Pugsy]

Where would you suggest to start for an upper limit?

Can't tell from these reports because you have to factor in the problems (or lack of) that reaching the upper limit causes...like leaks. If leaks are annoying (waking you up) at 12 then I would limit the max to 10 or 11...just below the problem level. You are a better judge of that than I am from looking at the reports.

any suggestions on battling the congestion?

Sorry but I don't have a miracle solution for that problem that works for everyone all the time.
I rarely have any nasal congestion issue and when I do it is because I have some sort of upper respiratory illness messing with me. I just do whatever works so I can get some semblance of sleep...oral meds or some Afrin.

As far as the noise at 6:17 or thereabouts....I wasn't there so I didn't hear it but I wonder if you had a little bit of water in the hose or mask. Water causes all sorts of weird noises.

[vandownbytheriver]

Did not have a great night last night, but managed to keep the mask on again. Woke up to weird noise from the machine, 6:17 am approximately.

https://imgur.com/a/OKihJ1h

It sounds like my old S9 in this clip! The noise at the end was the air popping through the cheek of the mask, not snoring or anything else. I normally can't hear the inhale/exhale like that. I turned the machine off and on, and then it stopped happening.

Problem with machine?

The fan doesn't do that unless something gets in there. How many hours does this thing have? That fan sounds like it's not long for this planet. Certainly an entertaining soundtrack to sleep to! Machine self-destructing, mask farting and burping... hopefully you sleep alone like I do. New turbines for Resmed Ax10's are 130$ on Amazon... got a spare sitting right here next to me.

Last night's results, with the machine weirdness at 6:15ish AM
https://sleephq.com/public/a00f1b46-747 ... b615001280

Thanks in advance, all!

I thought we'd tamed those leaks! Not last night anyway, looks like. You may have to tighten the top, in fact I'll bet on it... between one finger and two between the nosepiece and forehead... laying on the pillow sideways can and will distort the fit.

You won't find many others here that will advocate Afrin... you do become dependent on it... but I'm one of the addicted ones. In any case you'll need to use it to get clear enough for Flonase or other nasal cortisone to get up there and do some good. I use the generic, in the pump mist bottle... the objective is to get sprays to stay up there and not inhale strongly so that it doesn't just go through to be swallowed. I pick the worst nostril, dose it, wait for it to clear, then blow it all out and hit the sack. At 3$ per fluid oz I've been addicted to much worse and more expensive things.

[brainblur]

Can't tell from these reports because you have to factor in the problems (or lack of) that reaching the upper limit causes...like leaks. If leaks are annoying (waking you up) at 12 then I would limit the max to 10 or 11...just below the problem level. You are a better judge of that than I am from looking at the reports.

I think I was doing okay with 10 and 12 a few days ago, leaks wise. So maybe I'll start at 12 and see what happens, at least until I can get back into my DME for a different mask. Thanks for the suggstion!

As far as the noise at 6:17 or thereabouts....I wasn't there so I didn't hear it but I wonder if you had a little bit of water in the hose or mask. Water causes all sorts of weird noises.

Good to know - I had water in my hose once with my old machine and it sounded different, but good to know it could manifest differently.

The fan doesn't do that unless something gets in there. How many hours does this thing have? That fan sounds like it's not long for this planet. Certainly an entertaining soundtrack to sleep to! Machine self-destructing, mask farting and burping... hopefully you sleep alone like I do. New turbines for Resmed Ax10's are 130$ on Amazon... got a spare sitting right here next to me.

Haha, yes, also alone. Thankfully, in this case.

Something in there? I guess that could account for how it was fine after I turned it off and back on right away. Thanks for more "good" news. Haha. I just checked and it's at 8570 hours. Which I thought was low, since I see people going to 30k/etc, but then when I looked up your suggestion on Amazon the fourth review was something about having to replace it after 3 years... which is where mine is at, apparently.

So if a new blower is in order, should I do that or go for another round of Craigslist roulette? I could get an Airsense 10 autoset, or 11 autoset, or Aircurve 10 vauto, "low hours," for right around $200-350 near me. I had been thinking about either upgrading to the AirCurve 10 vauto since apparently as per one of your previous posts, if I'm reading correctly, it can be set to the same mode as an Airsense 10 anyway, and I had also been considering to upgrade to the Airsense 11 for the integrated "for her" mode until I saw there are some 11 issues. Or I suppose I could go for the floral Airsense 10 Autoset for her if the 10 is a better buy.

Would you steer clear of Airsense 11 autoset? I saw your thread about 11 issues.

I was reading previous posts on related topics and saw you had installed VAuto firmware on an Airsense 10 I believe it was, and had gotten it to show up as an AirCurve? Is this also possible with Autoset for Her on my existing Airsense 10 Autoset? If so, I'm thinking I might try my hand at a new fan and jailbreaking it...

You won't find many others here that will advocate Afrin... you do become dependent on it... but I'm one of the addicted ones. In any case you'll need to use it to get clear enough for Flonase or other nasal cortisone to get up there and do some good. I use the generic, in the pump mist bottle... the objective is to get sprays to stay up there and not inhale strongly so that it doesn't just go through to be swallowed. I pick the worst nostril, dose it, wait for it to clear, then blow it all out and hit the sack. At 3$ per fluid oz I've been addicted to much worse and more expensive things.

I literally LOL'd at your description of Afrin - weighing the pros and cons, for sure. (I want to make a crack here about that perhaps being another point of commonality with your namesake but can't bring myself to do it.)

At this point, if being addicted to Afrin is what it takes... it's that or give up on being a productive member of society.

I appreciate the additional detail on how to administer the Afrin, as I've definitely been doing it wrong, the times I've used it. Will try using your algorithm tonight XD and thank you.

--

So I am looking at stepping down the max pressure and seeing what happens, trying a new mask, trying to mess with my fit again in the meantime, and... possibly replacing the fan or buying a new/used machine.

If I do get another Craigslist machine, I am leaning towards a 570 hour Aircurve 10 vauto. Unless you guys advise me against it. Might it be worth it at this point? It's about the same price as an Airsense 10 with similar hours on Craigslist, there are a couple available, and I see reports on this board of people sleeping better with it, even with copying over settings as best as possible. Even if they don't specifically need a bilevel (?).

My second choice, unless you tell me otherwise, would be an Airsense 10 Autoset for Her. My technician at the DME told me they never use Autoset for Hr mode... but I'm learning from this board to not put too much trust in the DME employees. Any thoughts on Autoset for Her? I think I liked it on my previous (S9)...

Thanks again, all! I feel hopeful that I can beat this, and get my brain back, with your support. (And to show my appreciation, I decided to figure out how to quote excerpts. Thanks for your patience with that - brain fog, what can I say.)

[vandownbytheriver]

The fan doesn't do that unless something gets in there. How many hours does this thing have? That fan sounds like it's not long for this planet. Certainly an entertaining soundtrack to sleep to! Machine self-destructing, mask farting and burping... hopefully you sleep alone like I do. New turbines for Resmed Ax10's are 130$ on Amazon... got a spare sitting right here next to me.

Haha, yes, also alone. Thankfully, in this case.

Something in there? I guess that could account for how it was fine after I turned it off and back on right away. Thanks for more "good" news. Haha. I just checked and it's at 8570 hours. Which I thought was low, since I see people going to 30k/etc, but then when I looked up your suggestion on Amazon the fourth review was something about having to replace it after 3 years... which is where mine is at, apparently.

So if a new blower is in order, should I do that or go for another round of Craigslist roulette? I could get an Airsense 10 autoset, or 11 autoset, or Aircurve 10 vauto, "low hours," for right around $200-350 near me. I had been thinking about either upgrading to the AirCurve 10 vauto since apparently as per one of your previous posts, if I'm reading correctly, it can be set to the same mode as an Airsense 10 anyway, and I had also been considering to upgrade to the Airsense 11 for the integrated "for her" mode until I saw there are some 11 issues. Or I suppose I could go for the floral Airsense 10 Autoset for her if the 10 is a better buy.

By all means keep and fix the one you have. CL machines might be full of cat dander or cigarette smoke or worse! I think the motor replacement is not too big a deal, even for a prospective 'for Her' customer. Watch Nick's video on it and decide for yourself:
https://www.youtube.com/watch?v=vXoSxPP7shw
You don't need the screwdriver kit he uses... a simple T10 Torx screwdriver is enough to disassemble the entire unit.

Would you steer clear of Airsense 11 autoset? I saw your thread about 11 issues.

Yes, of course. It's a tarted up AirMini... the 10's are bee's knees.

I was reading previous posts on related topics and saw you had installed VAuto firmware on an Airsense 10 I believe it was, and had gotten it to show up as an AirCurve? Is this also possible with Autoset for Her on my existing Airsense 10 Autoset? If so, I'm thinking I might try my hand at a new fan and jailbreaking it...

Yes, all things are possible. PM me for more. My gurus don't think much of 'soft' or 'for her' algorithms but being a penis bearer I cannot attest either way.

You won't find many others here that will advocate Afrin... you do become dependent on it... but I'm one of the addicted ones. In any case you'll need to use it to get clear enough for Flonase or other nasal cortisone to get up there and do some good. I use the generic, in the pump mist bottle... the objective is to get sprays to stay up there and not inhale strongly so that it doesn't just go through to be swallowed. I pick the worst nostril, dose it, wait for it to clear, then blow it all out and hit the sack. At 3$ per fluid oz I've been addicted to much worse and more expensive things.

I literally LOL'd at your description of Afrin - weighing the pros and cons, for sure. (I want to make a crack here about that perhaps being another point of commonality with your namesake but can't bring myself to do it.)
At this point, if being addicted to Afrin is what it takes... it's that or give up on being a productive member of society.
I appreciate the additional detail on how to administer the Afrin, as I've definitely been doing it wrong, the times I've used it. Will try using your algorithm tonight XD and thank you.

Glad to help. I've been in a lifelong fight with my sinus... before oxymetazoline life was hell. Now life is just heck. If you look into the mechanism it uses it puts your sinus (and other tissues, avoid swallowing) into 'fight or flight' response, just as an adrenaline release or epi-pen would. Definitely a meta- type of mechanism. As I said, PM me before making any further choices... and watch Nick's video to see if you have enough snakes-n-snails to getter done.