[CPAP] Trouble staying asleep with CPAP

[Jay51]

This is just my experience of what has worked for me personally.  The 1st machine I got after my poly was the ST (A).  I tried about 75 times to fall asleep with it, but to no avail.  I can understand some of your difficulties.  The high pressures + the rapid fire cadence of the IPAP triggers were too much for me.  
By turning my pressures down very low (not even therapeutic), I was able to both fall asleep and stay asleep (and gained some confidence).  Then very slowly pressures were raised.  I could tolerate the pressure raises this time.  I am going to use the word miraculous, because that seems to be the best descriptor I can think of.  My RT thought of this plan after trying everything else.  
It might work lowering your pressures just to be able to start sleeping more with them.  Then slowly raising them.  All of this was before my septoplasty and turbinate reduction though.  Now, it seems like my Evo goes back and forth all night between 10 EPAP and 20 IPAP (PS 10 or so).  It is not a problem with my new nose.  
If it aint broke don't fix it.  But if it is broke, I would think experiment until you can fix it.  This idea of lowering pressures to sleep more and gain confidence, then slowly raising them to therapeutic levels may work.  It worked for me personally.  I tried to quit about 25 to 50 times, but I am grateful for all the encouragement and support I received here at ApneaBoard while I was struggling (especially from Sleeprider and Sarcastic Dave).  I hope you can find a solution to your current dilemma, Sarah.  And hopefully it is just that, a "current, but temporary dilemma."
You also have a good alternate suggestion to try from TechieHippie that may work.

[sarahsleeps]

Thank you both Lisa & Jay for your input, and just for sticking with me over here! I appreciate it so much.

Thank you also Jay for sharing some of your experience, it sounds like it was a rough road, I'm so glad you found the solutions and support you needed and stayed with it. Like you, I do think it takes me some time to get used to the pressures, as when I first started I was ramping at 4, now 4 seems way too low. So I think I'll get there, with practice, and maybe more patience than I normally have

Last night I tried 7-10 EPR 3, 10 min ramp at 6. To be honest I was still feeling left over anxiety from the bad night before and so I laid there for quite some time until I was really tired, basically dozing, and then finally put on my cpap. This is why I decided to ramp at 6, for just a little more comfort while falling asleep.
The good news is I was able to get a 3 hr and a 2 hr chunk. This is a little better. Maybe I am hoping for too much to think I could sleep all the way through the night?
My AHI was a bit higher than it has been lately, but it's not like it was too high at 2.13. I feel like I am in and around the right settings. I'll try this for another night tonight and go from there.

As always, I welcome any insights! @sleeprider if you are still reading this thread would love to know your thoughts on my pressure settings.

Thank you!

[Sleeprider]

I'm reading, and my silence is because I have nothing to offer that is better than what you have heard from Lisa and Jay. In your most recent charts, I see little more that can be done with CPAP settings with the Airsense 10, but lots of opportunities for bilevel like the Vauto.

[TechieHippie]

I was just going back and looking at your first page, you started about 2 weeks after me. I feel like I'm finally getting much better sleep, but only recently and we are still in pretty early stages. You also have the nasal challenges.

You might also be someone who has to go longer between pressure increases. That longer block of sleep on epr3 is promising, I think.

Remember your relaxation techniques. For me at least, getting into a pattern of belly breathing instead of pulling air through my nose is much more comfortable on my nose. I'm a big emdr fan too. Do you like binaural music for relaxation? Maybe something to try. Also, there is one audio recording (not binaural but spoken) I have had great luck with. Track 3-6 of disc 2 of "Resist Nothing" by Kim Eng from Sounds True - last I looked there was a digital download for less than $10, I like the whole thing but I keep coming back to those. It's a body scan visualization. I know how to do a body scan but I get distracted and for some reason this is one of the few things that works for me.

[sarahsleeps]

Thanks @sleeprider and @techiehippie!

Sleeprider, it’s reassuring to know you agree these are the right things to be trying, thank you. I’m curious if you have any opinion on whether a set pressure or a range is better? I don’t know a much about bilevel machines but I assume if you see opportunity there then a range is better if sticking with the Airsense?

Lisa, I didn’t realize we’d started so close together, thank you for the reassurance that these are still early days! I totally agree that relaxation techniques are key, I do remind myself to breathe from the belly and have been doing some meditations to help remember that. Last night I did one before bed knowing I was holding anxiety from the night before. I’ve also been using the ‘calm’ app for their sleep stories to help get to sleep. Some of them are so-so but some of them really work to put you to sleep. I notice that I usually wake up when the story has ended though after an hour. Then I put on white noise to cover the sound of my breathing on the cpap. I’m definitely going to look into the audio tracks you mentioned as I’m sure they can help.
I did a couple of therapy sessions including EMDR to get me started with cpap. I think that was a big factor in lowering my initial anxiety where I would panic after a few minutes with the cpap, and I think just to help in general with the kind of griefy feelings around being diagnosed with severe sleep apnea. Maybe I need another session to refresh that part.

Thank you again so much for your support!

[sarahsleeps]

Hi folks, I've been quiet for a few weeks while I focused on continuing to build my relationship to my cpap as well as try and zone in on the right pressure settings with a longer trial. I've stuck with 7-9, epr 2, I was using a 10 minute ramp at 6 but in the last few days I have managed to turn the ramp off altogether. I've had some decent nights of sleep, my ahi jumps around a bit but my average with these settings is 1.81 and I even had one unicorn night with an AHI of 0. I still wake up several times throughout the night but I am getting much better at putting my mask back on quickly. Sometimes I am just waking up due to a little whistling sound coming from my mask, and I need to take it off and wipe off a small amount of condensation, and then put it back on and go back to sleep. I've still had a few bad nights and I can see in Oscar that my flow limits are still high, but overall I feel like I am doing better at cpap, and my partner has told me I've been waking up happier and seem more productive so I'm grateful to be seeing a bit of a difference. I've attached a couple of sample nights of oscar data here just really for reference or in case anyones sees anything I should take a closer look at.

I also had my review with the surgeon that I was supposed to see about having my tonsils removed. She agrees my tonsils could be a factor but she suggests doing a DISE to confirm before tonsillectomy. BUT she also had a completely different opinion about my nasal blockage. She felt my deviated septum should be repaired as well as lateral wall reinforcement and inferior turbinate reduction, all done surgically at the same time as the DISE. I'm not sure if I have all the terminology correct, she called it a partial rhino septoplasty, but the way she described it to me is that she will remove my septum, straighten it, and cut two little pieces to put on the side walls of my nose to help with nasal collapse, as well as surgically reduce the inferior turbinates. She gave me a 60% chance of better nasal breathing. Over the last month and a half since I had seen the original ENT who referred me to this one, I had basically resigned myself to live with my nose as-is or possibly have the in-office turbinate reduction, and focus on removing my tonsils to hopefully lower the severity of my sleep apnea. I'm super confused now. Mostly I am concerned about the side effects of that much surgery on my nose, as well as whether the appearance of my nose will change. My nose doesn't appear to be crooked now, the septum deviation is totally hidden inside my nose, and I'm a little worried as she said that my bridge could change as well as the appearance of my lateral walls. She also mentioned the risk of getting a hole in the septum that could permanently cause a whistling sound. I instantly thought about how much I hate when my cpap mask makes a whistling sound, I can't imagine how I would feel if it were coming from my nose.

@Jay51 If you are still reading this thread, I know you had similar or the same surgeries done and you were glad you went through with it, I was wondering if you've noticed any change to the appearance of your nose? Were you concerned about empty nose syndrome or any other long term side effects?

Would love to hear more about anyone's experience with these surgeries if you are reading, and also just in general how many opinions do you normally get before going ahead with a surgery like this? I still have an appointment coming up in late May with a Dr who does the in-office turbinate procedure, so while I am put on the wait list for surgery I suppose I will see what he has to say too.

Thank you to anyone who is following along!

[Jay51]

Thank you for the update Sarah.  I only saw an ENT and he did a septoplasty and turbinate reduction.  I was going to do the Latera nasal wall implants (done in office), but my insurance denied that.  Very happy with the results though.  I can use either breathe right strips or equivalent or nasal dilators if I want to at night to further open my lateral nasal side walls.  Do some research on the Latera implant Sarah if you want to.  I had some concerns about the Latera because if the implant moves around, it might have to be adjusted or even taken out.  Cartilage grwos around it for months and it eventually gets solid.  Some surgeons use cartilage to make their own "Latera" - to open up the nasal side walls further.  

Before the surgery, I would wake up in the middle of the night and couldn't breathe at all out of my left nostril at times.  It got so bad I may have totally mouth breathed at times.  When I looked up my nose with a small mirror and flashlight, I could see much less room in my left nasal passage compared to my right one.  After the surgery, I could immediately breathe better.  When I looked up my nose after surgery, the left nostril was opened up and about the size of the right one.  I was very pleased.  

I was planning on doing a test taking some naps with my new nose on my s9 adapt with OSCAR and compare them to post surgery.  BoxCarPete said he got about a 10% - 15% improvement in tidal volume after his surgery (if my memory serves me correctly).  Just going by feel it feels about that same percentage or even up to about 25% possibly (I have only been using my ventilator at night).  

It is much easier to breathe at night now with the ventilator.  I have even modified my full face mask (pushed it up as far as it will go so it fits snuggly under my chin).  That way I only breathe through my nose all night I think.  I like it better than breathing through my mouth.  But I know some people have to mouth breathe.  My full face mask is not functioning like a gigantic N20 mask.  I just like it that way now. 

You can still post updates about what you plan on doing in the future here and get feedback.  I hope you make the right decision as to exactly how to proceed from here (with the conflicting suggestions from the healthcare professionals you have gotten so far).