Former lurker breaks cover

[phobos]

Greetings to fellow mask-heads. I appreciate this board and its users. When I read threads, I read them beginning to end, no matter how many years have passed. Still relevant, and questions, advice, and opinions from actual users are so useful. My insurance works with few DMEs, and I've had no communication from the RT at this company since my inial referral. If I want to try other masks, it's out of my pocket on a limited income. Still, I'm glad to have the basics; many aren't as fortunate. Could be better, could be worse.

Things I've learned six months along as a CPAP user:

1. Some of us are not getting top tier care, which makes this board even more valuable. CPAP support definitely is necessary.

2. A DME's respiratory therapist can be one of the most important persons in one's life, and yet we can't interview them before being referred to a provider. I'd now choose the therapist over the company if co. had bad reviews for administration/office staff I've been limited to one mask, the same one I tried during the sleep study. (Which took forever to get appointment, and they didn't do an EEG. I have other sleep disorders, as well.)

3. CPAP therapy is serious business. Before using, I didn't understand that one can literally die while asleep. I didn't have typical symptoms. I didn't fit the profile. Thought it was a waste of time and CPAP was weird and too much trouble. Next thing, of course, tests indicated I had severe sleep apnea. What? I've since read about two deaths caused by sleep apnea. (Sleep apnea was also confirmed as one of the causes of Carrie Fisher's death.)

4. CPAP is helping me a great deal, when I get the CPAP universe all lined up. And when I'm not sick. I'm glad it's helping others, and I believe in it, despite the problems. There is, however, a learning curve, and I have a lot to learn. (Obviously, I can't get help from a respiratory therapist! . Why would I expect that? lol)

5. Still need to better understand SleepyHead. Read that SH is now works with my Dreamstation, so will need to update software. (And become more confused?)

6. I WISH there were an online company that could offer a trial kit (even for a modest fee) that would let you try at least three masks at a time, in all sizes. I'd try a used and clean sample. I think one of the main reasons compliance falls off with CPAP is because, in many cases, with or without insurance, there is no one to work with us individually for, say, six months. This is an important therapy for us, and it needs to be fine tuned. (An involved, caring RT would also be helpful.) Having a chance to try many masks (and reading comments here, of course), would improve chances for success, greater comfort, higher compliance. No one should have to suffer alone, or suffer at all, with CPAP therapy. Then there are the technical aspects, which are a whole other enchilada.

Sorry this is so long. Am grateful for this board. Take care.

[chunkyfrog]

It has helped many.
Welcome to the party.

[Pugsy]

Welcome to the forum.

[TedVPAP]

Welcome to the forum.
Playing a role in the management of your PAP therapy is very important for many people. Most people here have learned what works for them because we needed to learn.
Regarding sleepyhead, there are three links below that may help. As with most things, a little digging/learning goes a long way. Once you SEE the air flow in and out (or doesn't), it is much easier to appreciate what the numbers mean to you and your sleep.
Most importantly, only you can determine if you are sleeping better or worse - so patient involvement is important.

[kteague]

... If I want to try other masks, it's out of my pocket on a limited income... they didn't do an EEG. I have other sleep disorders...

Hello and welcome. While it may still be hard on a limited income, I've read that the sponsor of this forum cpap.com does offer mask insurance on some masks which makes the loss not nearly so great if it doesn't work well for you and you have to return it. Did you have a home study? Wondering what other sleep disorders you have and how they were diagnosed.

[LSAT]

6. I WISH there were an online company that could offer a trial kit (even for a modest fee) that would let you try at least three masks at a time, in all sizes. I'd try a used and clean sample. I think one of the main reasons compliance falls off with CPAP is because, in many cases, with or without insurance, there is no one to work with us individually for, say, six months. This is an important therapy for us, and it needs to be fine tuned. (An involved, caring RT would also be helpful.) Having a chance to try many masks (and reading comments here, of course), would improve chances for success, greater comfort, higher compliance. No one should have to suffer alone, or suffer at all, with CPAP therapy. Then there are the technical aspects, which are a whole other enchilada.

Sorry this is so long. Am grateful for this board. Take care.

The owner of this message board...cpap.com..sells masks and offers free return insurance on some and offers low cost return insurance on others.

[chunkyfrog]

Our host packages many nasal pillow masks with multiple sizes.
THE GREAT PILLOW EXCHANGE thread grew out of a desire to trade our spares.