5 years in, man time files!

Howdy,

I have been using CPAP now for over 5 years, which is just shocking to me. It doesn't seem like that long ago that I finally got started on the long and winding road to living with CPAP. I am still so grateful that I have CPAP in my life, my biggest fear now is going back to being the zombie I was before having it. I never want to be that sleep deprived again, I was in pretty bad shape at towards the end. I would pass out against my will as though I had narcolepsy, I had no energy at all, and my ability to think clearly totally degraded to the point I could no longer perform simple tasks that I used to have no trouble with.

CPAP changed all that for me, but there were still a bunch of items where the forums helped me out tremendously. I don't think I would have met with much success if I had not read here about how acid reflux irritates the throats soft tissue stiffening it up and making CPAP treatment less effective. Mine was mild enough I might not have taken steps to treat it, yet it was severe enough to affect my CPAP use. These forums were also a great place to learn about masks too, though that is really a never ending search.

I keep waiting to hear about some cool new technology that solves sleep apnea better then CPAP, like a bionic airway or something. We may not be there yet, but some of the new cpap machines look pretty cool. I have not kept up as well as I should either. It has been a while so I wanted to check back in and see what was new. I am glad that I did too because lurking a bit introduced me to a few cool things. I am really anxious to get and try out an oximeter, I think that would be a great tool for fine tuning and detecting potential problems.

I still go through phases where I occasionally have some kind of problem and backtrack a bit. I have twice now had my sleep hose crack on me above the part the plugs into the humidifier. The worst part was that I had no idea for an undetermined amount of time. I became sleep deprived gradually enough I didn't notice it till it had been going on for a while and then finally noticed it. I am a bit paranoid about checking it now. lol.

One thing that has really bothered me over the years is getting sick. That would bother anyone I am sure, but with CPAP a head cold and end up clogging your airways and leading to no good sleep...that always makes me nervous. The last thing you want when you are sick is to also be sleep deprived, that is when you need rest the most. lol. I have not found a particularly good solution to that one yet. I suppose a full face mask might be the answer, but so far I have muddled by just hopping to recover before the lack of good sleep gets too bad.

I have also been a bit complacent with my mask. I am using the Activa which is one of the few masks that worked for me. I went through so much trouble to find one that would make a seal that I hesitate to risk trying new masks. I have a large neck and an eggish shaped head so finding headgear that will stay on has proven to also be very difficult. For example I tried the hybrid mask out soon after it first came out, but the headgear didn't fit me that well. Actually I kinda disliked the mouth part anyway, but the headgear really stopped me from giving it a fair shake. The Activa's works well enough for me to stick with it, but I do wonder if I am missing out on an even better solution sometimes. I have also been dealing with some issue's with it's headgear lately. It is one of the few styles that seems to stick to my head enough to use, but the neoprene has been digging into the back of my neck and irritating it till it breaks out and gets all sore and irritated. It will heal up for a while then the cycle will repeat. I really might have become a bit too complacent and should probably try and find a better solution than just sticking with it. lol.

At any rate I just figured I would pop in and say hello and that I hope everyone is hanging in there and having some success with this stuff!

Congrats on 5 yrs! Great accomplishment.

Might try getting new headgear for your mask, sounds like it's lost its elasticity -- consistent increased leaks are my tip to needing new headgear. Might try making your own Hybrid headgear for colds and congestion, no rule says ya gotta use the mfgs.

Hey Will...I remember you... good to see you again!

You're right, time flies. Doesn't seem like that many years could possibly have already gone by, does it!

You might contact Karen at her padacheek.com website to see if she could make you (or maybe already has them) covers for your Activa's headgear. The original Activa sure was a good mask about sealing well. Or, perhaps something like the PAPcap (to have cloth between your scalp and the headgear) might do the trick.

Glad you came by with the update on how things are going for you.

I think the padacheek solution is EXACTLY what I am looking for. I had actually thought about trying to create a similar solution with cotton pads, but the padacheek neck guard is way better and far more secure looking. I am really excited to try it as there is a unit designed for this already on her site. Thanks for suggesting it! I had heard of the padacheek stuff back in the day but didn't realize the line expanded to include things like the neck guard. I am very much looking forward to using it!

Hehe, the last time I got sick I hate to admit that at one point I thought about taping the end of the hose into my mouth so I could try and get a good nights sleep. Thankfully it didn't come to that, but those are the things that enter my mind when I am too tired to think of better solutions. I had one other mostly crazy idea about trying to attach nasal pillows or prongs via a nose piercing. I had that thought after having some non-sticking velcro issues with my headgear and seeing a guy with a giant nose ring. I considered that a really off the wall idea till I saw the boil and bite mask and that travel cpap machine you can strap to your head. I am glad to see they are out there trying new things.

Congrats on your 5 yr anniversary. Must be getting close to needing a new machine...how many hours does yours have on it? Since you've been exploring new things, the latest machines have great bells and whistles these days. You might also want to try a nasal pillow mask as these are easy to fit, and the only seal to worry about is at the nostrils where getting a seal is much easier with a little help from Lansinoh.

Are you using insurance to supply your gear? If so, you may be eligible for a new machine, mask etc. now.... most insurances will replace machines at the 5 yr mark.

I am almost one year into my therapy, and I find your story inspirational. I look forward to being able to share my 5 yr. anniversary one day!