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+--- Thread: [Treatment] Struggling with treatment, looking for advice (/Thread-Treatment-Struggling-with-treatment-looking-for-advice)
Struggling with treatment, looking for advice - dkmk - 06-08-2024
I understand that CPAP therapy takes a long time to get used to. It will likely take me longer than most. People keep saying that consistency is key, you must use it every day. I have some questions around consistency.
1. Is it better to wear the mask all night even if I’m not sleeping, or wear it for only a short while and then take it off and sleep without it? My clinicians have said the latter is better so that I am not associating being upset/insomniac with CPAP treatment, but I am beginning to doubt there is any benefit to that, particularly because of my next point.
2. Even when I just wear the mask for a little while and then take it off, it often takes me hours to feel like I can breathe again. The other day I was completely unsuccessful and ended up having a panic attack feeling like I’d forgotten how to breathe. I did not fall asleep until I went to the clinic and got a sedative the following afternoon and I spent that entire time gasping for breath and feeling like my heart wasn’t quite right. I want to be clear, panic attacks and extreme anxiety are not normal for me in any context other than CPAP therapy. The sensation of having perpetually inflated lungs apparently really bothers my brain.
So my point is, if I’m going to be barely sleeping and reliant on sedative medication whether I keep the mask on or not, wouldn’t it be better to just keep it on? And how do I deal with this panic associated with having perpetually inflated lungs? I have some skills I developed for dealing with flashbacks (deep breathing, grounding techniques, bilateral stimulation, distraction, etc) but they are not working.
Preemptively addressing some suggestions:
- I do put the mask on to watch TV and stuff. I can tolerate this better than sleeping with it but I do still end up with heart palpitations sometimes just from that, and sometimes that does last hours after I take it off too.
- I have tried various mask styles and determined that the one that works best for me is a nasal cushion. I don’t feel particularly claustrophobic about it anymore.
- I have played with ramp, EPR, and humidity, although I will revisit those now that my machine is no longer faulty. Ramp made me feel like I was breathing through a straw, and EPR made me feel like I was being forced into a particular breathing rhythm.
- I am working on talking to a sleep doctor but I need a new referral to a new doctor as my referral has expired and my old doctor was disrespectful to me anyway. I don’t have a family doctor either and I’m moving soon so it’s a whole thing.
- I can’t afford psychotherapy unfortunately. I did it for years under a charity program so I genuinely do have a lot of distress tolerance skills but CPAP feels different somehow.
RE: Struggling with treatment, looking for advice - PeaceLoveAndPizza - 06-08-2024
To truly help we need to see data. Please read the links in my signature “Download OSCAR” and “Formatting OSCAR Charts”. Once we have some charts we can offer advise on proper settings to help.
It sounds like you are trying to find what works, but without a baseline to start from you are hoping to find the right combination by guessing. Personally, I do not like guessing when it comes to helping someone find what works.
I suggest starting with a good basic setting. Something like:
Mode APAP
Min pressure 7
Max pressure 15
EPR 2 full-time
No ramp
Once you have a few nights, post some charts. There are many people here who can help fine-tune the settings from there.
RE: Struggling with treatment, looking for advice - dkmk - 06-08-2024
Okay, I will download Oscar. Thanks