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Two years and still fighting it

I have been on my CPAP machine for over 2 years and have yet to feel refreshed when I wake up. I have been through several masks - nasal, full-face, now using a hybrid - but have never found one that didn't wake me up numerous times during the night leaking. For the last 3 months I've gone to bed about once a week without my CPAP because I just wanted a night where I could sleep more than an hour without be roused by the whistle. I've tried all the mask fitting tricks, done pretty much everything else I could find to do. Right now I would kill for one night of good, solid sleep. (okay, probably wouldn't kill....) By the way, we are self-pay, so buying more and more masks is prohibitive. And I don't mess with my DME anymore (sit in a chair, choose one of our 6 masks, give us lots of money, now leave.)

I'm really, truly not a cynical whiner, honest :-)....I'm just a little frustrated and SO TIRED. Anyone have any magic tricks to offer?

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Replies to This Discussion

Permalink Reply by Lynette on November 2, 2009 at 9:03pm

My mask is the Resmed Mirage Liberty.

sleepycarol said:

Okay another stupid question for you Lynette

Is your mask the Liberty or the Hybrid? There is a mask named the Liberty that is made by Resmed and then there is the Hybrid that is made by another company -- Innomed. Both of these masks have pro and cons and they aren't in the same areas. BUT they are similar in the way they are made and some have found if one didn't work for them the other did fine.

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Permalink Reply by sleepycarol on November 2, 2009 at 9:13pm

If you can't get it to work try the Hybrid. I have read that the Hybrid is built sturdier as well and doesn't have the elbow whistle.

I have thought about setting up a swap group. I got some of my masks that way on cpaptalk. I don't have any qualms about using slightly used masks. It saves a bunch of money and I get to try various masks that I otherwise wouldn't be able to try.

I think I will do a poll and see if there is any interest.

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Permalink Reply by susan mccord on November 3, 2009 at 9:37am

Lynette, have you talked with your sleep doc about a re-titration study? I'm wondering if your pressure's too low. If you've been as compliant as you describe, seems as though you'd be having some relief after 2 years.....If you're still not getting enough air pumped in, it would explain your not feeling better by now. Maybe!

I'm no expert by any means, but it's hard to believe someone in treatment has to suffer as long as you have.....

It's worth a re-test as far as I'm concerned.

Susan McCord :-)

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Permalink Reply by susan mccord on November 3, 2009 at 9:40am

Andy, check out Carol's post about maybe starting a swap option on SG. She just posted it yesterday. We'll probably have to wait for Mike to approve it 'cause of liability (?), but it seems like a reasonable idea to me...

Susan McCord

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Permalink Reply by Noel King Piros on December 10, 2009 at 10:02am

I had this problem for the past 4 years - went through countless masks and finally found something to help. I'm a side and belly sleeper and my masks always moved and leaked when I tried to sleep on my side or belly. My RT finally showed me a new CPAP Pillow that has the sides cut-out to allow room for my mask. It has made all the difference regarding leaks. I've now been using my CPAP for the 1st time in 4 years on a regular basis - 3 weeks and counting! Although I'm waking up more tired/sleepy than before, my eyes are puffy in the morning and I've gained 5 pounds. I have yet to experience all the wonderful effects that everyone told me I would see - feeling refreshed in the morning, losing weight, clearer thinking, not falling asleep at my desk or anytime I sat still for a few minutes - when does this start????!!

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Permalink Reply by Mary Z on December 11, 2009 at 10:38am

It takes some of us more time than others. After 20 months on CPAP, now BPAP, I am still getting my numbers adjusted. I takes some time for titration to take effect. I also read that some of us never get over the need to take a medicine (usually Provigil or Nuvigil in my experience) even though we are 100% compliant with CPAP. So, in the meantime while you wait to get better you might ask your doc for something to help with the daytime sleepiness and fatigue. I have tried to wean myself off of the meds, but always have the dayime sleepiness come back.
Maybe one of the professionals can comment on the lack of improvement in daytime sleepiness and fatigue in some of us giiven compliant usuage of our machines.

Thanks, keep us posted.

Mary Zimlich

It has made all the difference regarding leaks. I've now been using my CPAP for the 1st time in 4 years on a regular basis - 3 weeks and counting! Although I'm waking up more tired/sleepy than before, my eyes are puffy in the morning and I've gained 5 pounds. I have yet to experience all the wonderful effects that everyone told me I would see - feeling refreshed in the morning, losing weight, clearer thinking, not falling asleep at my desk or anytime I sat still for a few minutes - when does this start????!!