been on CPAP for 5.5 weeks, still tired. pulmonologist has dismissed me

[mushroom]

    hi everyone! ive posted here once before but i'm otherwise fairly new here. i've also posted on a couple other forums like reddit and another sleep apnea forum, and am just trying to get as many opinions as possible to figure out what's going on and why i still feel tired because my doctor has told me there's nothing more she can do for me as my numbers look "perfect". i have OSCAR readings below if anyone would be so kind as to take a look at them to see where i might be able to improve.

quick rundown of some info:
me: age 29, F, 175lbs, no other significant health issues aside from some hypermobility and sustained a concussion last march. diagnosed with OSA in november. using CPAP since 12/1.
sleep study: indicated an AHI of 13.5 with O2 dropping to 86%, total time under 90% was 3mins
equipment: resmed airsense 11, N20 nasal mask, using tape to hold mask on and over my mouth as i suspect mouth breathing at night. was prescribed 4-20 pressure range, upped it myself to 6-20.
additional info: i'm a side sleeper FWIW.

i recently was diagnosed with mild/moderate sleep apnea back in november after a debilitating "insomnia" episode in september. i chalked my symptoms up to a concussion i sustained earlier in march of 2023, until i had a sleep study done in november indicating that it turns out i have OSA. i suspect i've probably had sleep apnea for a few years now, but it was only until as of august of this last year that things really started impacting my life, though i believe 2022 was really when things gradually were on a downhill climb. 

i have been using my CPAP since 12/1. months before i started my CPAP machine i practically felt like a zombie--i was forgetting things constantly, could not concentrate whatsoever, had very bad brain fog, mood was all over the place. today at 5.5 weeks i'm finding that i'm doing a lot better. a lot of the fog has lifted but still struggling with tiredness and fatigue, as well as lingering memory/concentration problems.

today, i had my first appointment with the pulmonologist since my initial appointment and expressed my concerns to her, and she said that since my numbers look good and that my AHI is under 1, my symptoms can no longer be attributed to SA. she also went as far to tell me that "fatigue" isn't the same as "sleepiness" (which i agree to an extent, but when i expressed that i am still struggling with feeling sleepy during the day as well, she brushed me off... i have been yawning all day, and this past week ive had to take evening naps here and there despite sleeping 7-8 hours a night.) 

i'm unsurprised i essentially got the "too bad, so sad, see you in a year" from my doctor as it seems to pretty much be a pretty common experience among sleep apnea sufferers, but i was hopeful my appointment would have gone otherwise. i thought she would at least narrow my pressure range down or at least give me some pointers, but the only advice she had would be to reach out to my PCP even though i've tested for what feels like almost everything at this point.

so yeah, any help appreciated. im just trying to figure out what else can be done within my power, or if almost 6 weeks still too early to really see the benefits of CPAP, and i just need to wait for time to run its course? or if i'm just screwed? lol. as i mentioned, i've gotten advice from people on reddit and someone on apneaboard after posting my OSCAR readings a month ago, and i've been advised that i seem to be having microarousals throughout the night. and someone on reddit mentioned potential leak issues. i've been taping my mouth at night for a couple weeks now but i'm unsure if it's helping or not, so i'm not really sure what else to do. i tried a full face mask but i think i unhooked it in my sleep one night and woke up in the middle on another so i switched back to my N20. i dont really know how im going to hold a job if the rest of my life looks like this, plus i had to move back in with my parents due to these issues. i know stimulants are an option but i don't think i want to go that route unless i absolutely have to.

i've included my OSCAR readings from the past week, i hope it's not too many. i'm still trying to figure out how to interpret them, charts and graphs have never really been my strong suit and when i'm dealing with this much fatigue it's even harder to learn the ins and outs.

thanks so much in advance!

1/8: (last night): https://cdn.discordapp.com/attachments/9...4fae28&

1/7: https://cdn.discordapp.com/attachments/9...18a6ea&

1/6: https://media.discordapp.net/attachments...height=662

1/5: https://media.discordapp.net/attachments...height=662

1/4: https://media.discordapp.net/attachments...height=662

1/3: https://media.discordapp.net/attachments...height=662

1/2: https://cdn.discordapp.com/attachments/9...ba7dc0&

[Phaleronic]

There are some leaks still.. I'm sure one of the others here will have some ideas, but the treatment overall looks pretty good. I hope you can figure it out and feel better soon.

[PeaceLoveAndPizza]

You have done a grand job finding a working range. Let’s tweak it a bit.

Min pressure 7
Max pressure 10
EPR 3 full-time
No ramp

A bit more pressure should help with the arousals and hopefully with your sleep quality.

As Phaleronic pointed out, your do have some leaks going on. Not a lot by any measure, but something to keep an eye on. They look for the most part to me as mask shift or mouth leaks, so if it wakes you up consider trying a soft cervical collar or mouth tape.

[OpalRose]

equipment: resmed airsense 11, N20 nasal mask, using tape to hold mask on and over my mouth as i suspect mouth breathing at night. was prescribed 4-20 pressure range, upped it myself to 6-20.

I suspect your mask doesn't fit properly.  I can understand using tape over your mouth, but I'm not comprehending this:  "using tape to hold mask on."  

I can also see the arousals in your flow rate graph, and it seems to line up with the spikes (mask movement) in the leak rate graph.

Your leak numbers are low and does not affect the machines ability to operate properly, but does affect your ability to get a good nights rest due to the arousals.... which may explain why you are so tired during the day.

Have you tried other masks, or possibly the N20 is too large for you?  Also, don't overtighten the straps.  

You may want to read the Mask Primer for other tips.

[Gideon]

We need to see several 3-5 minute segments so we can see if something.

Start by looking near the spikes in the Flow Rate.

[mushroom]

There are some leaks still..  I'm sure one of the others here will have some ideas, but the treatment overall looks pretty good.  I hope you can figure it out and feel better soon.

thank you! appreciate the well wishes

You have done a grand job finding a working range. Let’s tweak it a bit.

Min pressure 7
Max pressure 10
EPR 3 full-time
No ramp

A bit more pressure should help with the arousals and hopefully with your sleep quality.

As Phaleronic pointed out, your do have some leaks going on. Not a lot by any measure, but something to keep an eye on. They look for the most part to me as mask shift or mouth leaks, so if it wakes you up consider trying a soft cervical collar or mouth tape.

thanks so much for your reply PeaceLoveAndPizza!

so, i did actually have my minimum pressure at 7 for a few days, however, i think it may have been the source of a couple really bad migraines i struggled with on two occasions. if you think it would be a good idea to increase the pressure, do you think somewhere in between 6 and 7 would still be okay? here are some OSCAR screenshots on a couple of the nights that i used it at 7, on 12/20 and 12/21 if that might give you any additional insight.

i do actually use mouth tape and have been for about maybe a week and a half or two. i think it might be helping but i'm not 100% sure.

i also have EPR 3 set to full time. i need to do more research on what this means because i'm not entirely sure.

and i do see people in the CPAP community go back and forth on whether or not to leave ramp on or off. no ramp essentially means that it's no longer APAP, just regular ole CPAP, correct?

I suspect your mask doesn't fit properly.  I can understand using tape over your mouth, but I'm not comprehending this:  "using tape to hold mask on."  

I can also see the arousals in your flow rate graph, and it seems to line up with the spikes (mask movement) in the leak rate graph.

Your leak numbers are low and does not affect the machines ability to operate properly, but does affect your ability to get a good nights rest due to the arousals.... which may explain why you are so tired during the day.

Have you tried other masks, or possibly the N20 is too large for you?  Also, don't overtighten the straps.  

You may want to read the Mask Primer for other tips.

thanks for your response OpalRose! 

so, the reason why i tape my mask to my face (specifically the straps, not the mouthpiece) is because i've ripped my mask off in my sleep before and i'd rather not take any chances with that happening again. even though i'm pretty tired still, i definitely do notice a difference in how i feel if i don't use my CPAP. but maybe it could be contributing to mask issues?

as far as other masks go, i've only also tried resmed's F20 full face mask size S. it's pretty uncomfortable unfortunately, as it squeezes the bridge of my nose. i may have to check to see if size M would be better but iirc it seemed kind of big. i also managed to unhook the tube from my mask while wearing it one night--it's a lot easier to unlock than the N20 so i've been nervous to try that again. i did manage to sleep with it with a full night though on december 18th but the pressure ramped up quite a bit higher than it usually does, so i'm not totally sure what that could indicate.

regarding the sizing of my current N20 mask, i like to think it fits okay, at least while i'm awake but it's hard to know for sure at night. i do find it difficult to find the right strap adjustment though. in the morning i'll usually wake up with strap marks and redness around my nose so maybe it is a little too tight. i also suspect that maybe what might be happening is while im sleeping, my pillow could potentially be pushing into my mask, causing air to leak around the bridge of my nose. ive woken up with dry/swollen eyes a couple occasions. i've heard nasal pillows are good for side sleepers but i would be concerned about them shifting too much. i'll have to take a closer look at this mask primer page.

[mushroom]

We need to see several 3-5 minute segments so we can see if something.

Start by looking near the spikes in the Flow Rate.

for sure, thank you for your response Gideon.

hopefully this is helpful, let me know if you need me to zoom out or zoom in more.
here are some closer screenshots from last night's report:

one
two
three
four (im not sure if this is a microarousal but in my flow rate before 00:51 there's a little jagged hump, with an increase in pressure and square in flow limit?)
five
six (pretty long leak rate block)

i tried to give a bit of a range without bombarding you with a million of them. if the blocks in leak rate indicate leaks coming from my mask, it does look like they are often correlating with the spikes in my flow rate--from my amateur POV anyways.

thank you again for replying, i really do appreciate the help.

[SarcasticDave94]

I'm in agreement with others on mask and leaks. These 2 issues have been the downfall of many regarding CPAP. I would consider one of these options: another size cushion unless you've done this specific to the N20, maybe a different model mask like ResMed P10 or another N model, (ResMed mask models F = full face N - Nasal P = Pillows), maybe different adjustment of straps but never go discomfort tight or try again with another mask or size. Maybe take a look at Fisher and Paykel masks, I've liked them when I was treated.

Ramp on ResMed initiates a timed hold of start pressure at whatever it's set at, it always restarts ramp timer on machine start up, again ResMed specific, others have a Ramp button separately from power. It does not make CPAP an Auto/APAP.

Setting Min pressure to 7 allows EPR 3 to work immediately. For EPR to work completely, the following must be true:
Min pressure 5 allows EPR 1 to work fully
Min pressure 6 allows EPR 2 to work fully
Min pressure 7 allows EPR 3 to work fully

Why? Your AutoSet has a hard stop at min pressure of 4. EPR is designed to reduce by its setting number as a pressure reduction subtracted from min pressure.

"too bad, so sad, see you in a year" not Dave with their attitude. If your doctor or other pulmonary person aren't willing to listen and offer help, the last thing they need to hear is goodbye, I'll be transferring my medical needs elsewhere. It's not worth the stress to fight against the medical person that's supposed to support you.

Suggestion is call your insurance, ask for in-network pulmonary doctors, get a list of 3-6 near you in-net, note the contact info and call the list, find out which are accepting new patients and get a feel if they'll support your needs, make appointment with best one. Stick with one that allows you to keep ResMed as you machine choice. ResMed in my opinion is the gold standard machine.

[Deborah K.]

Another thing to consider is that you have only been using your machine for 5 1/2 weeks.  Many of us do not feel great for a much longer time than that.  It's a big adjustment to have a foreign object stuck to your face and strapped around your head.  Your tiredness may take a while to dispel also.  Add to that a dismissive doctor and you also face frustration.  You don't actually need a pulmonary doctor to oversee your pap therapy.  Your regular doctor can handle everything for you.  And for advice and help you will find much more of that here than you would get from any doctor.

Give yourself time.  Your numbers are great already.  You will start to feel better and better as you adjust more.  

[mushroom]

thanks everyone that has replied so far! it means a lot that you all have my back and advice. apologies that i havent gotten a chance to respond to everyone as i'm still pretty tired and it's all a lot to take in, but i'm reading everyone's comments and letting the info sink in.

an update: last night i did something a little different: i taped my hose in place over my headboard as before it was probably bouncing around everywhere without anything to hold it in place while i sleep. i believe this helped reduce my leak rates further. i do see a few leaks but this seems to be the lowest leak activity i've had so far. maybe this is the key to keeping it low. hopefully i can get a better set up for keeping my hose in place when i have some money to spare.

sadly, i did wake up at about 3am for some reason and haven't been able to fall back asleep, so i only got 4 hours of sleep last night. i do see a leak occurring right before waking up so it might partly be that, though i suspect it might be also be a hormonal thing as that time of the month is starting. the night before wasn't awesome either and i couldn't fall asleep until 7am, so i was hoping to get a full night of sleep, but alas. hopefully my hormones will chill out in the next couple of days or so and can have a better idea if this helps me feel a little better.