Okay, I think I have recovered enough to resume normal posting. I was already extremely distressed from having high hopes about this custom mask and then experiencing these problems, so the perceived put-downs in the posts were really getting to me.
Here are some more updates and information. Take from it what you will (i.e. it is what it is):
The first three nights were already documented in previous posts.
The fourth night, I tried a piece of silicone [commercial link removed by Admin]
which I had used on an old hybrid mask two years ago. I cut it to fit the lower chamber (it was too thick for the nasal area). This made a superb seal around my mouth. I used scuba diver mask sealer on my nose. I took an antihistamine at bedtime and then a sleeping pill in the middle of the night. Sleep quality was excellent for seven hours, but again my teeth were sore from the mask being so tight.
The fifth night, I used a piece of Mack’s Earplugs (described on the package as silicone putty). I molded it into a snake and placed it around the mouth area. I also tried a piece in the nasal area, but it was always too thick (even when I severely flattened it out). I spread scuba diver gel in both chambers. The seals were excellent. Again, I took an antihistamine at bedtime and then a sleeping pill in the middle of the night. I had only one apnea event for the entire six hours. But again, I faced the morning with sore teeth.
Last night I took a break and did not use the CPAP. I was tempted to go back to my normal FFM, but I still have a bruise and red sore from that mask pressing onto my nose. The custom mask does not touch that spot so the timing on getting that mask was rather fortuitous (I had already stopped using the CPAP to allow my nose to heal – I even tried using my old nasal pillow mask with my mouth taped shut which did not work before and did not work again).
I originally thought that the tube that holds the mask to the OA was hollow at only one end. I now realize that it is hollow all the way through. I was wondering what this odd whistling sound was and it was air exhaling from my mouth. I plugged the end and that solved that problem.
There are still confusing things about the design. Why are the nasal and mouth chambers not connected? Perhaps it is the design intent to force all the air through the nose. Maybe this is the most efficient way to breath. But if I have nasal congestion, this mask is useless. I am still tempted to drill a hole between the chambers. I could plug it back up if necessary. My only hesitation is that it may void the warranty (my email to the lab was returned as undeliverable - ha, oh well). The hard acrylic is not comfortable. My intuition says I need something flexible pushing against my face. The Mack’s Earplug is flexible but it has virtually no elasticity, so that is not an ideal option. I’m thinking of swim goggles. Some are made of acrylic without any cushions. I tried those and could never get them to seal, plus they were painful. Obviously, they work for some people since they still sell them. The swim goggles that work for me are the ones with the foam cushions. I cannot even get the solid silicone cushions to seal around my eyes.
I’m thinking this type of mask would work well for someone with a lot of skin fat. I don’t mean that in a disparaging way, it’s just a personal, analytical opinion.
I’m also concerned about the need to take a sleep aid to get any sleep with this mask. Although that is what I essentially had to do when I first started using my CPAP and that may be a way to “force” me to get used to this mask, I am even more concerned about the need to make the mask so ridiculously tight that it hurts my teeth.
I’m thinking about buying some thin, foam weather-stripping to see if that will work.
So far, the “common denominators” for each night are:
- The leakage is the biggest challenge.
- The CPAP pressure required is an average of 3 cm/H2O lower (I love this auto-titration machine!)
- The sleep quality is improved, but the duration of sleep is less.
- My teeth are suffering due to the mask being so tight.
I should probably point out that ALL of the medical professionals (DME provider, doctors, sleep technicians, etc.) have insisted that I make my mask way too tight and some leakage is always normal. Perhaps that is so, but I just cannot sleep with a leaky mask no matter how slight. Invariably, it seems that when there is a leak, it blows right into an eye. Under that scenario, I cannot sleep even with the strongest sleeping pill out there. So, my position is, if I can’t sleep, then what’s the point?
It bears repeating, I cannot imagine anyone making a decision to buy or not buy something based on the experiences of just ONE PERSON! When I review a product on Amazon, I read all the reviews and use what is most pertinent to me personally. One of my hopes about this thread is some others else will post their ACTUAL (vs anticipated) experiences.
Even if you think my whole effort is completely ludicrous, having information regarding one’s options is never wasted knowledge.
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