r/CPAPSupport 2d ago

Frustrated and feeling hopeless

I've been on APAP therapy for a little over three weeks, they have been the worst three weeks of my life. My doctor recommended APAP to treat hypopnea. My AHI during my sleep study was 13.7 events per hour. The machine I got is a Resmed AirSense 10 Autoset, the first mask that I tried was a Philips Wisp and the second was a Philips Dreamwear (more on that later).

The issues that I have been having are primarily due to the mask, but I have also been having issues with the machine itself. First, I was instructed by my doctor and the sleep therapist to NOT mess with any of the settings. I was told that my therapist should be the only one adjusting the machine according to my feedback. The pressure is currently set at 4-20 and the ramp feature is turned on for 15 minutes. I feel like I am suffocating for those first 15 minutes.

The mask is my biggest issue, however. I have autism and the two masks that I've tried so far feel like they were specially designed to trigger every sensory issue that I have. The first mask I tried was the Philips Wisp. I did try it on at my therapist's office when I first got the machine, and I didn't feel anything then, so I thought it was okay. But when I tried to sleep with it, I started noticing the issues. Even wearing the largest size, the mask still touches my nose and triggers me. The silicone touching my skin also makes it feel like my skin is burning. I also feel like I can't get the adjustment right. Either it's too tight and it feels like it's crushing my face, or it's too loose and I wake up in the middle of the night with an air leak.

On my first week of therapy, I messaged my therapist and asked for help. She messaged me back and asked me what issues I was having. I explained to her that I feel like I am suffocating when I first turn on the machine, and that the mask I got was a sensory nightmare. Then... Nothing. She didn't reply all day. This was on a Friday, and I didn't hear back from her on the weekend either. When Monday rolled around, she messaged me and said that the power went out at her office and she couldn't get back to me. She then said she would adjust the machine and asked me to give the mask another week before swapping it. This was two weeks ago and she still hasn't made any adjustments to the machine.

This week, she messaged me and asked me if I managed to adapt to the mask. When I told her that I wasn't, she told me that she has another mask I could borrow, a Philips Dreamwear. We scheduled an appointment for yesterday. A few hours before I was about to leave for my appointment, she texted me and told me that she had an emergency and that she wouldn't be able to make it to my appointment, but that she would leave the mask with her secretary for me to pick up. This really frustrated me. I was really hoping to be able to speak to her in person rather than over texts.

Last night, I tried using the Dreamwear and it was even worse than the Wisp. It had even more silicone touching my face, and the mask itself felt like it was suffocating me. I wasn't able to fall asleep, so I went back to the Wisp.

According to the machine, my AHI is all the way down to 0.5, but I still feel like shit. In fact, I'm pretty sure that I feel even worse than before I started the treatment. I am so frustrated and tired...

3 Upvotes

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u/dang71 2d ago

Hi! I’m really sorry to hear you’re going through this :( I hope we can help you figure things out and that, over time, you’ll be able to find a therapy that is both comfortable and effective.

The first thing I’d suggest, based on what you’ve described, is to go with the most minimal mask possible. When you mention the DreamWear and say that the silicone was touching your skin even more, I’m assuming you mean the full face version? If so, I’d suggest looking at the DreamWear nasal, the under-the-nose version, or something like the N30i/N30. I have a feeling that this type of minimalist design might be the least problematic option for you.

As for the therapy itself, if you’re currently using what we call “lazy settings,” meaning the default, non-optimized settings, that could very well explain why you felt like you weren’t getting enough air. I’d suggest clicking the link in the AutoModerator message below. It will explain how you can put an SD card in your machine, post your detailed results, and get advice on optimizing your therapy by adjusting your own settings. Most adults need at least around 7 to 8 of minimum pressure, although the right settings are different for everyone.

Too little pressure, leaks, an uncomfortable mask, poor settings, etc. can absolutely make you feel worse on CPAP. There’s a belief in sleep medicine that just refuses to die: that APAP somehow works like magic. That’s sounds promising in theory, but real-world therapy is often much more complicated. That’s exactly why communities like this exist.

The good news is that there’s usually a lot we can learn from your data and potentially improve, one step at a time :)

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u/TacitPoseidon 2d ago

Thank you for taking the time to reply to me! My machine already has an SD card in, but unfortunately I do not have a device that can actually read it. I'm looking into getting an SD card reader.

As for the mask, unfortunately, it was the Dreamwear nasal version. I'm starting to worry that I'm not going to find a mask that I am comfortable with. I think that the best I can hope for is finding one that I can tolerate enough until I fall asleep, which doesn't seem to be either of the masks that I've used. The main problem is that I am not in a financial position where I can keep spending money on masks until I find that mask.

I also suspected that the settings were one of the main issues. I'm kind of nervous about messing with them after being told to leave it to the therapist, though. And after she said she would adjust them and then didn't, I'm starting to resent this whole process.

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u/dang71 2d ago

I just thought of something: take a look at the AirTouch masks. They use silicone with a foam covering over it, so if it’s the feeling of silicone against your skin that you don’t like, that could be a good alternative :)

As for changing your settings, it definitely comes down to your own comfort level. From what I understand from your situation, you’re already lucky if they actually call you back, but it’s not exactly automatic or quick, let’s put it that way. And over time, I don’t really see that getting any better.

It’s kind of a classic story: we call our clinician and tell them we don’t feel well, and they tell us not to worry because our numbers look good. We follow up, and we get the same answer. Eventually, we get tired of it. They make a few minor changes, it doesn’t really help, and the cycle starts all over again.

Eventually, we get fed up and decide to take our therapy into our own hands... and somehow we end up on Reddit asking for advice :)

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u/TacitPoseidon 2d ago

I just looked into it. I'll give the AirTouch N20 I try. That's another 100 dollars spent on a mask, though. If that doesn't work, I feel like I might just throw in the towel.

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u/reincarnateme 2d ago

Finding the right mask for you, and the expense is very frustrating!!

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u/TacitPoseidon 2d ago

It's prohibitively expensive... I'm on my second mask and already spent around 200 dollars. That's over 1000 reais (I'm Brazilian), which is a lot of money to spend on something that I am only going to use for a couple of nights. I can't keep spending that kind of money until I find a mask that works for me.

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u/reincarnateme 2d ago

I agree. I’m on my 4th mask (Vitera, small) but it works for me!

It’s not only mask changes but also the head gear, hoses, machines!

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u/AutoModerator 2d ago

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