Still Feeling Terrible After 3 Months

[npolite]

Hi everyone

I've had my struggles with CPAP so far and trying to battle this out. I have been working with someone on Reddit and have lowered my max pressure to 12 which have lowered my CA. I am still feeling tired and waking up on a regular basis around 4-5am. Can someone review my OSCAR data and see if I still need to lower my pressure? BTW I've tried mouth tape and had a burning reaction to the off brand KT tape as well as BSN medical stretch roll tape. I also tried the F30i full face mask and had more leaks from that and felt way worse over not using CPAP at all.

I'm currently using the N30 mask but might have better luck with the N30i small sized headgear mask. I originally had the normal sized and that kept slipping off. I would appreciate any help as my NP is useless and doesn't even review the OSCAR data.

Thanks

https://imgur.com/fl05ZPk
https://imgur.com/X1Ph0SX
https://imgur.com/5oryVAK

[Miss Emerita]

You could try lowering your pressure a little if you want to. I say that because you aren't having any OAs. Possibly that would help you sleep more restfully; at any rate, it's an experiment worth trying. It could also be interesting to see whether your flow limitations go up if your pressure goes down. See what happens if you go down to 9-11; leave your ramp where it is or turn it off.

You might consider trying a nasal pillow mask, because the pillows can anchor the mask a bit. It's hard to tell, but it seems possible your leaks are waking you up.

You might try a box of Somnifix tape strips. They're pricey but very gentle on the skin. If you do well with them, you could try some other brands of tape to see whether you can find something cheap and non-reactive for you.

Does anything happen around the time you usually wake up? Light starts filtering into your room? Your pets get restless? The furnace turns on? Or ... ?

[npolite]

Thank you for your reply. I will try the 9-11 and see. I need the ramp up because I tried a while back to start at 10 and could not fall asleep with that pressure.

I initially tried pillow masks but that was with a lower pressure (5 instead of 7.4 now) and thought I was suffocating. Once I get the smaller gear I can give it a try again. I'll also look into ordering the Somnifix and see if it helps. I am willing to spend money to fix my issue.

I have dark curtains as well an don't know why I wake up around that time. I hate to be one of those tin foil crazies but could it be some type of EM issue?

I'll report back in a few days on the newer pressure settings and then once they new equipment arrives.

Thanks again for all of the help.

[npolite]

Here is the update with the lower 9-11 pressure:

Friday night https://imgur.com/taCoFXh
Saturday night https://imgur.com/zYtDou4

During Friday night I can't explain after I wake up why I had so many clear airways as I was still awake. In any case I've ordered the SomniFix as well as Nasocort to try out. I'm running out of things to try so hopefully something here works. I also bought another stretch roll tape but UPS delivered it to the wrong address.

[Pugsy]

I can't explain after I wake up why I had so many clear airways as I was still awake.

Because our awake breathing is very irregular compared to asleep breathing and the machine doesn't measure sleep status....instead it measures air flow or breathing which sometimes, when awake, gets a central apnea/ Clear Airway flag while we are awake.
They mean nothing (except we weren't asleep) if flagged while awake.

[Miss Emerita]

As Pugsy says, you should just ignore CAs that are flagged when you are pretty sure you were awake.

I don't see a big change in your flow limitations with the lower pressure. You could try going lower to see whether that helps -- say, to a range of 8 to 10. This is just an experiment, in case higher pressure is making it harder for you to sleep soundly.

You are not getting enough sleep, in all likelihood. If you usually wake up quite early, can you try going to bed earlier to see whether that helps you feel more rested the next day?

Your leaks are looking better; I hope that's a trend.

Next time you post a chart, could you close the calendar first so that more of the data on the left panel will show?

[npolite]

Thank you both. Crazy enough I have not used mouth tape just switched back to the N30i mask. I will also close the calendar and try lowering the pressure next weekend. I don't want to make matters worse and feel even more tired with work.

[I've Been Tired]

That's a lot of leaks. I didn't feel better until I got my leaks down to zero. If the leak is coming from your open mouth, I would try several different tapes until you found one that didn't bother you.

[ejbpesca]

I have never felt better from my many years of CPAP therapy because I have issues that prevent good sleep. One I am continually struggling with is my full face mask blowing air out the parimeter of the mask. The air blows over my face and eyes, therapy is lost, and I wake repeatedly. Last night I set the min. pressure back down once again to prevent leakage.

[I've Been Tired]

I have never felt better from my many years of CPAP therapy because I have issues that prevent good sleep. One I am continually struggling with is my full face mask blowing air out the parimeter of the mask. The air blows over my face and eyes, therapy is lost, and I wake repeatedly. Last night I set the min. pressure back down once again to prevent leakage.

Get an anti leak strap from padacheek. Cinch it up tight. It should drop your leaks down to zero. It did for me.


https://www.padacheek.com/product-page/anti-leak-strap

[npolite]

Here are a few lower pressure settings I have been trying at the suggestion of others.

https://imgur.com/a/teJLCna

I am starting to see hypopneas and Reras (last night). Should I try to disable EPR? I see mixed results in people where it makes it worse for some and better for others. Isn't is supposed to be an issue if you see OSAs? I'm feeling worse every day because it is harder for me to fall back asleep and for the past several nights I have stopped using CPAP for the remainder of the night.

[robysue1]

I am starting to see hypopneas and Reras (last night).
...
Isn't is supposed to be an issue if you see OSAs?

The hypopneas and reras are most likely occurring because you've lowered the max pressure a bit too far. On paper your data looks better with a max pressure of 10cm instead of 9cm.

Having said that, however, I'll also add that it appears that your overall AHI on the last two nights (the ones where Max Pressure = 9 is still well under 5.0. (You unfortunately took a screen shot that doesn't show the data in the left bar of the OSCAR window, and I'm not going to try to count the events.). If you said you had woken up feeling reasonably rested, then there aren't enough events to worry about in this data. But you're still not waking up feeling rested, and so something is still an issue. Whether it's your residual AHI or something else remains to be teased out.

Should I try to disable EPR? I see mixed results in people where it makes it worse for some and better for others.

For some people, EPR does seem to be an issue, but for others it's a critical part of making the whole sleeping with a machine much more comfortable and much more effective. You can't base what you should do in your own bedroom based on what happens to most people.

For me: Aerophagia was my biggest, most fearsome problem that had to be conquered in order for me to sleep will with PAP therapy, and EPR = 3 was not enough pressure relief on exhalation for me to breathe comfortably. Hence the switch to bilevel therapy where my PS could be increased to the 4-5 cm range, which was enough to take the edge off the aerophagia and allow me to focus on sleeping well.

Other people? There are some who develop problems with excessive numbers of CAs when EPR is set to 3, and these people often see those CAs disappear with EPR turned down to 1 or 2 or turned off. And there are a few people who find that too many residual obstructive events (OAs, Hs, and RERAs) occur with EPR = 3 unless they bump up their minimum pressure setting to compensate for the lower pressure on exhalation. In other words, there are people who want/need to use EPR = 3 to feel like their breathing is normal, but who also find that if their titrated pressure need was 8cm without EPR, they need to bump up the minimum pressure to 9 or 10 cm if they want to use EPR.

For you? In order to figure out whether to turn EPR off or simply down, you need to do some experimenting. I would suggest you do the following experiments far away from bedtime when you are fully awake so you can more consciously assess what happens.

Because EPR doesn't kick in at all until the pressure reaches 7cm, you should turn the ramp off for these experiments. It looks like your minimum pressure setting is already set to something that is at least 7cm, but if not you will need to increase the minimum pressure setting up to 7cm in order to be able to have EPR = 3 kick in with its full relief on exhaling. So before starting this experiment, get into the clinical settings and turn ramp OFF and check that min pressure = 7 or higher. (You don't need to increase max pressure for this experiment.)

First, set EPR = 3 and lie down in bed in your normal position breathing with the machine for at least 10-15 minutes. Pay attention to what feels "ok" and what feels "wrong". In other words, try to figure out whether you are exhaling completely and comfortably with the current settings. Also try to figure out whether you are inhaling completely and comfortably with the current settings. If there are problems, spend the time trying to sort out what feels "wrong". Is the machine forcing you to inhale or exhale before you are ready to? Are you working too hard to inhale or exhale? Does the machine's cycling from EPAP to IPAP and back feel like it matches your normal breathing pattern? Or does it feel like the machine is trying to make you inhale/exhale before you want to? Answers to all of these questions will help point the way to figuring out the best EPR setting for you in your bed.

Next, turn EPR totally off, but leave the pressure settings as they are (i.e. min pressure = 7). And again, lie down in your bed in your favorite sleeping position and simply breathe with the machine for another 10-15 minutes. Again, pay attention to what feels "ok" and what feels "wrong". If you find that exhaling with EPR = OFF is not any harder than exhaling with EPR = 3, then you have some solid evidence that you are among the people who don't really need EPR in order to feel comfortable while using the CPAP machine. On the other hand, if you feel like you just can't force the air out comfortably or you can't exhale completely when EPR = OFF, you've got some solid evidence that you are among the people who find that EPR is needed in order to get a decent night's sleep.

The next step is to try EPR = 1 for at least 10-15 minutes and compare your comfort and ease of breathing with that setting to what you felt when EPR = 3 and when EPR = OFF. Then do the same thing with EPR = 2. Each time, pay attention to the same things: What feels "ok" and what feels "wrong". Can you inhale and exhale completely and comfortably? Does it feel like the machine is trying to force you to inhale/exhale before you want to? Does it feel like the machine is preventing you from inhaling/exhaling as fully as you want to?

Now, the total length of time for all these experiments should be somewhere between 40 and 60 minutes, but at the end, you should have an idea of which EPR level feels best for you in your bed in your favorite sleeping position. Use that information to then set up your machine for use when you go to bed. In other words, after the experiment is over, it's fine to turn the ramp back on with your current beginning ramp pressure.

I'm feeling worse every day because it is harder for me to fall back asleep and for the past several nights I have stopped using CPAP for the remainder of the night.

You don't want to hear this, but ...

One of the reasons you are feeling worse every day is that you have stopped using the CPAP "for the remainder of the night" on the past several nights.

The longer you sleep each night without the CPAP, the more apneas you have during that part of the night. And the worse you will feel in the morning.

What you need to do is find a way to encourage yourself to not just take the mask off in the middle of the night because you are having trouble getting back to sleep with the mask on.

There are a couple of things to try:

1) Go ahead and get out of bed and leave your bedroom for a few minutes. Sit quietly and maybe do some old-fashioned reading of a boring real book. (Don't turn the tv on and don't watch videos or web browse on your computer or cell phone.). Wait until you are yawning and very sleep, and then go back to bed and mask up and try to get back to sleep. The point behind this suggestion is this: If your body has not fallen back to sleep in about 15-20 minutes after a wake, your body is fighting sleep rather than trying to get to sleep. And you might as well get up and do something else until the body starts to feel very sleepy again.

2) Consider turning the ramp off. If you can breath comfortably at 7cm (your current minimum pressure setting), then using the ramp after a middle of the night wake may be increasing your anxiety about what's going to happen when the ramp goes off. Or, you could be having problems with an unstable airway (flow limitations) just as you are starting to drift off, but because the machine doesn't increase the pressure to make the airway more stable, you wind up jerking back awake (for fear an OA or H is happening) instead of transitioning to real sleep.

[npolite]

Thank you for advice. I really feel comfortable with EPR at 3. I only had ramp up because I could not fall asleep when my min pressure was 10. I think 8-10 setting would be a better place to try things as it seems to be a good spot for me.

The other thing I could try is have a range from 7-10 and turn ramp off. I can fall asleep at my current 7.4 setting. I did try EPR at 2 and while I did fall asleep it did feel a lot more harder to get used to that. I would most likely need at least a week of trying to get comfortable with no EPR. My AHI has been under 5 most of the time but I just don't know how long this is going to take to actually feel better.

[npolite]

I tried the past two nights with no EPR and it was a mixed bag. On the one day I had a lot more CAs and on the other they were about the same. IDK if I am over analyzing this but I truly hope improvement comes soon because I don't know what else I can do to resolve these.