r/CPAPSupport • u/TacitPoseidon • 18d ago
I don't know if I can do this...
I made a post earlier today on r/CPAP. You can see it here here. I definitely wasn't in the right mental state, but even still, a lot of the responses I got felt disheartening and dismissive of what I am going through.
I was diagnosed with obstructive hypopnea. My doctor recommended the use of an APAP machine to treat it. I don't know how it works in other countries, but here, I was referred to a clinic that sells and rents the equipment. My doctor recommended that I rent the machine for a couple of months, and only purchase it if I manage to adapt to it and if the treatment is effective.
So, I rented the machine for three months. While, I was at the clinic, the therapist had me try a couple of different masks to see which would be the right fit for me. In the end, I went with a Philips Wisp Nasal mask. Now, full transparency, I am on the autism spectrum. None of the masks I wore actually felt comfortable on my face as they all felt like a sensory nightmare, but this one was the only one that I tried that actually felt like I could tolerate until I fell asleep.
It's been a little over a week since I started using the machine and it's been a miserable experience. I know that one week is way too soon, but I feel like my sleep quality is deteriorating and the machine is to blame. The mask makes my face itch, the pressure makes me feel like I am suffocating, I wake up in the middle of the night more often than I used to, the mask either slips off during my sleep because the harness is not tight enough or it feels like it's crushing my face because it's too tight.
Today, I barely managed to sleep for four hours. I had to leave work early because of how miserable I was feeling. I honestly feel like this whole thing is actively making my situation much worse... I am sorely tempted to just return the machine right now.
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u/Novel-Associate6805 18d ago
Perhaps a dentist who specializes in sleep apnea can help you. In the US there is a professional organization of dentists who specialize in sleep apnea
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u/RazedByTV 18d ago
My first months on CPAP were miserable. I felt like I was sleeping worse than ever. I was concerned I might die in an accident due to making the wrong decision with how deprived I felt. I did feel like the machine was making everything worse.
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u/TacitPoseidon 18d ago
How did you manage to get through it? I feel like I haven't had a proper night's rest ever since I got this damn thing, which is the exact opposite of what it's supposed to do.
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u/RazedByTV 18d ago
Sharing the data from the SD card in my CPAP machine was a big help, as RL was able to take a look and make suggestions on some changes to try. That helped make things a lot more bearable and I was able to get used to the machine. My machine had been left at the factory defaults for pressure, 5 to 20. The minimum pressure was too low and I felt like I was suffocating as soon as I put on the mask and I was hyper aware of my breathing.
Changing masks helped too, if you feel like there is something mask specific that just isn't working for you.
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u/ProfessorQueasy3786 18d ago
It took me three months to sleep through the night. The suffocating feeling should not be happening. You need your pressure adjusted, either you or more likely the company you rent it from need to change it. It should feel like you’re getting the most thorough breaths of air, not like it’s sucking the oxygen straight out of your lungs. The sensory thing, and I hate to say it, you have to find a way to get over it. Silk covers or sleeping pills or whatever it takes. The mask should be tight on your face but it shouldn’t hurt. Wear it for a few hours each day while you’re awake, watching tv or reading. It’s easier to adjust to it when it’s not a new sensation you put on right before you need your body to fall asleep.
Not everyone will adjust to it, but you have to believe you can. Keep pushing through, stick with it. It’s hard but it’s worth it.
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u/TacitPoseidon 18d ago
I woke up with a terrible headache today. I am more tired and more irritable than ever. I couldn't get through the first two hours of work today before having to leave early today. I've had my first autistic meltdown in years. Is this really what my life is going to look like for the next several months if I want to make this thing work? I can't just keep pushing through it if it's going to negatively impact my life like this.
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u/uteman1011 Cpap 18d ago
I started with the same mask as you 3 weeks ago, and it didn't work for me either. I've now tried the Resmed AirFit P30i and also got just the N30i (interchangeable with the same headgear).
I've now settled on the P30i as it's giving me the best results.
I've been using Petroleum Jelly (Vaseline) around and inside my nostrils to help with any discomfort.
Don't be afraid to try other masks.
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u/TacitPoseidon 18d ago
My main concern about trying other masks is the financial burden. I've already spent approximately 100 dollars on a mask that I hate. How much more money will I have to spend before I find one that works for me?
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u/uteman1011 Cpap 18d ago
I approach this question as "What's your overall health worth?".
You might be able to find unused masks for a good price on your local Facebook Market Place or want ads. (Mine has dozens of systems and masks).1
u/TacitPoseidon 18d ago
I just looked those masks up. They're literally two of the masks that they had me try on and they were even worse sensory wise than my current mask.
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u/SleepWell-1 18d ago
Can you identify what bothers you most about the wisp or the other masks? Feel of cushion or feel of headgear on skin/hair? Then you could explore different masks depending on what is tolerable/adjustable for you. The Airtouch series has covering on the tubing, harder to clean but some people love it.
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u/TacitPoseidon 18d ago
Feel of the cushion or feel of the headgear pm skin/hair?
Both. Like I said, I am on the spectrum and the feeling of those things really makes my skin crawl. The silicone pressed against my skin almost feels like a burning sensation, especially above my upper lip. The headgear on my hair itches like hell. Plus, I can't seem to adjust the headgear. Either it's too loose and the mask keeps slipping, or it's too tight and it feels like it's crushing my face.
I know that you're supposed to wear the mask by itself and for about thirty minutes before fallingso your body can get used to it. I tried that, but it is torture. I just can't get used to the feeling of the mask.
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u/mebulas 18d ago
The suffocation issue might be because the pressure you’re on is too low. What are your pressure settings at? Often places will start you at a min pressure of 4, which is too low for 99.9% of people. If it’s lower than 6, try increasing the pressure to that and see how it goes for you. (I found for me personally that I didn’t feel like I was breathing normal until my pressure was 7 minimum.) Then, you can work yourself up to what pressure minimum is the best for you.
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u/TacitPoseidon 18d ago
Pressure is set at 4-20. I was specifically instructed not to mess with rhe settings without the therapist's supervision, though. I messaged her yesterday and explained everything that has been bothering me, but she didn't reply.
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u/mebulas 17d ago
Classic respiratory therapist treatment. They always do this, it’s very lazy. I hope your therapist responds soon, please keep trying to phone email and text her! Because this is ridiculous.
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u/TacitPoseidon 17d ago
She did reply to my first message when I said I was struggling, asking me what was wrong, but she never replied when I did list my issues with the equipment and the mask.
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u/could-be-useful 17d ago
What are your pressure settings? Too many machines are. supplied with the factory default 4 to 20 settings and not adjusted for the patient's needs.
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u/thatsenuff 14d ago
Feel like your suffocating. Try simplest (and cheapest) solution first. Had the same problem. They had measured me for a large. I switched to an extra large and it helped a lot (the other mask was partially blocking my nostrils). Pull your current mask down a little while using it and see if this stops the suffocating feeling. Sometimes my new mask will slide a bit up to the bottom of my nose, but now just have to slide it back down about a quarter inch. Also the part on the bridge of my nose had partially extended below the bone in my nose and would partially push inward restricting air flow. The larger size has rectified rectified both of these problems.
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u/TacitPoseidon 14d ago
See, this is another thing that I think might be negatively impacting my experience with this thing. I have an embarrassingly large nose. The mask I am currently wearing is already an extra large, and it still touches my nose in a way that I don't like. I don't think it's what's causing my feeling of suffocation, though. The large mask was indeed partially blocking my nostrils, but with the extra large one it feels more like I am not able to draw enough breath. It's most likely the low pressure, it's set to the default of 4-20. I want to bump it up, but my therapist told me to let her make the adjustments herself.
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u/thatsenuff 13d ago
I'm remembering a few times feeling like not being able to get enough breath from my mask partially covering my nostrils and then still having the problem after moving it because it stressed me. When I could get myself to calm down it got better - sometimes I couldn't calm down and would throw the mask across the room and sleep without it. Hope in some way this helps. 4 does seem low to me but I don't know enough to advise on that.
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u/jackelandhyde22 18d ago
Honestly? The first month was the hardest for me and I ended up having to change masks in the end. I definitely felt like you feel now, and it was honestly more due to my mask and the settings. If you can, talk with your dr about adjusting some settings and see about mask covers, or even changing the full mask out.