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What I've learned in one year
Posted: Fri Jan 13, 2023 1:31 pm
by TKS
What follows is what I've done and found works for me. I hesitate to post because I'm NOT offering advice, and some of my choices are unorthodox and may not past muster with the forum reviewers. But it is what it is. (1) Going through Medicare was a nightmare. In a nutshell, very restrictive controls/reporting, very limited choices, forced to work with a local supplier I had enormous difficulty contacting and an even harder time seeing. (2) After quitting for a few months I realized my severe sleep apnea was non-negotiable. No improvised workaround worked. Literally this was going to kill me. So in sheer desperation I decided to buy my own machine and equipment, after having the sleep center fax my prescription. I also decided staying alive was worth any amount of money. So I went direct and paid for a better machine ($1,700) and tried five different mask/headgear combos in various sizes ($500). Btw, testing with refundable fit packs saved money. I had to wear each for a few nights to really see what worked best. (3) I discovered that nasal masks didn't work because of needing a chin strap, which quickly got annoying. Full mask was better. Anything resting on the bridge of my nose didn't work and caused severe damage. So now I use a full mask with under the nose holes. Love it. Oh, and silicone causes a rash. And silicone also makes my face sweat, which breaks the mask seal, which causes hissing and results in a red face seal failure indicator. (4) The style of mask I use allows me to fold a plain facial tissue in half and put on my face under my nose and over my upper lip, mouth and chin. Then I put the mask on. I can breath through the nose unobstructed and though the mouth as needed, but this style of mask helps keep my mouth shut. I also put folded tissue under each strap for comfort and to reduce strap marks. Works perfectly and I sleep straight through the night, which I hadn't been able to do in years. (5) Now this last bit is controversial: I don't use the humidifier. I live in Florida where there's a lot of humidity. Plus keeping my mouth closed keeps it from drying out. I do apply an internal nasal moisturizer, which keeps crusties from forming. Without the added water molecules in the airflow, the tube and mask stay cleaner, and more oxygen gets delivered. (6) Final words: Even under ideal circumstances, CPAP is not pleasant, and it can be a long and arduous journey to find something you can live with. That's the point -- you would only do this if your life depended on it. And if you have severe sleep apnea, it does. Not just better energy and alertness, but helping prevent all kinds of life threatening conditions like, in my case, heart failure and AFib due to years of untreated apnea. So there it is. Take what you want and leave the rest.
Re: What I've learned in one year
Posted: Fri Jan 13, 2023 3:25 pm
by Okie bipap
Welcome to the forum. We all do what works best for us. Congratulations on finding the method that works for you. I have gone through close to 20 masks trying to find one I can sleep with. My wife and I were both able to get our machines through Medicare without too many problems. Right now, we are trying to get replacement machines, and haven't heard anything from the DME. If we don"t hear from them within the next week, I will probably go ahead and purchase them with out using Medicare.
Re: What I've learned in one year
Posted: Sat Jan 14, 2023 12:06 am
by ozij
Welcome to the forum, TKS, and thank you for posting that detailed report.
I've taken the liberty of editing the quote to make your numbered statements stand out.
TKS wrote: ↑Fri Jan 13, 2023 1:31 pm
What follows is what I've done and found works for me. I hesitate to post because I'm NOT offering advice, and some of my choices are unorthodox and may not past muster with the forum reviewers. But it is what it is. (1) Going through Medicare was a nightmare. In a nutshell, very restrictive controls/reporting, very limited choices, forced to work with a local supplier I had enormous difficulty contacting and an even harder time seeing.
- (2) After quitting for a few months I realized my severe sleep apnea was non-negotiable. No improvised workaround worked. Literally this was going to kill me. So in sheer desperation I decided to buy my own machine and equipment, after having the sleep center fax my prescription. I also decided staying alive was worth any amount of money. So I went direct and paid for a better machine ($1,700) and tried five different mask/headgear combos in various sizes ($500). Btw, testing with refundable fit packs saved money. I had to wear each for a few nights to really see what worked best.
- (3) I discovered that nasal masks didn't work because of needing a chin strap, which quickly got annoying. Full mask was better. Anything resting on the bridge of my nose didn't work and caused severe damage. So now I use a full mask with under the nose holes. Love it. Oh, and silicone causes a rash. And silicone also makes my face sweat, which breaks the mask seal, which causes hissing and results in a red face seal failure indicator.
- (4) The style of mask I use allows me to fold a plain facial tissue in half and put on my face under my nose and over my upper lip, mouth and chin. Then I put the mask on. I can breath through the nose unobstructed and though the mouth as needed, but this style of mask helps keep my mouth shut. I also put folded tissue under each strap for comfort and to reduce strap marks. Works perfectly and I sleep straight through the night, which I hadn't been able to do in years.
- (5) Now this last bit is controversial: I don't use the humidifier. I live in Florida where there's a lot of humidity. Plus keeping my mouth closed keeps it from drying out. I do apply an internal nasal moisturizer, which keeps crusties from forming. Without the added water molecules in the airflow, the tube and mask stay cleaner, and more oxygen gets delivered.
- (6) Final words: Even under ideal circumstances, CPAP is not pleasant, and it can be a long and arduous journey to find something you can live with. That's the point -- you would only do this if your life depended on it. And if you have severe sleep apnea, it does. Not just better energy and alertness, but helping prevent all kinds of life threatening conditions like, in my case, heart failure and AFib due to years of untreated apnea. So there it is. Take what you want and leave the rest.