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Having Success and Feeling Optimistic

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Orvwik +0 points · over 2 years ago Original Poster

Hi all,

Just a quick update on my situation. Please, catch up first by going to my original post "Central Apnea Emerging"... https://myapnea.org/forum/ahi-turning-into-ca. Reading most of it will catch yo up on the details of my situation and likely answer any questions for you/provide more specifics.

wiredgeorge and sleeptech, thanks for weighing in so much. And, sleeptech, one of the two factors in my new found success is based on your EPR advice. I stuck with no EPR and started to get much better results. I was consistently down to an AHI between 5-8 for weeks - still mostly Centrals. Here's the bigger discovery...

A few weeks ago my humidifier ran out of water and I registered my best night ever. Instead of filling it the next night, I opted to try a dry night again to see if it could make a difference. I've yet to fill it again. My AHI has been under 3 consistently. I'm having nights where I'm only at .9. My 107 day average AHI has plummeted from 8+ to 4.66 in only a few weeks. I'm leaving well enough alone for now but I'm wondering if I can even turn my pressure down from 9.4.

I'm still tired waking up. I don't feel totally refreshed, though as the day rolls on I have all the energy I need to do my thing. I'm guessing after a few months of an AHI under 5, I'm really going to notice a difference.

So, for those of you struggling as I did (please, read the conversation in the Central Apnea Emerging post I made), there IS hope. Self titrating became the path for me. I hate to say it, but my sleep docs were simply unhelpful (I've had 3). It took months of dealing with Central Apnea (and the anxiety that goes with it) before I was able to make these two critical moves that changed everything. 1. No EPR except for the low setting on Ramp when I go to bed (I likely don't need that even now but I'm not messing with anything while the results are good). 2. No humidifier. These may not be the answers for everybody, but if you're struggling in the same way I was, it's worth a shot.

It's taken me nearly 5 months to get to this point! The previous 5 months were really rugged. So when they say it can take a few months to normalize on treatment, just know, it CAN take way longer, but you CAN get there!

A couple of other things I'm doing: Since January 4th, 75% of my diet has been plant based. I walk 3-5 miles everyday. I've lost 27lbs - from 208 to 181 (I'm 5'7"). It could very well be that the improved sleep is also helping me lose weight. Now I'm just hopeful for a morning in which I wake up feeling totally refreshed. Maybe that's just not possible for me, but I'm definitely feeling hopeful. You can get there too!

Cheers, Orvwik

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wiredgeorge +0 points · over 2 years ago Sleep Enthusiast

That is really great news. I am struck by how often folks are disappointed in their sleep doc. Fortunately, I never met or saw mine (I think he may be a ghost or machine or something). Not sure why the humidifier makes a difference. Beyond my understanding of the therapy. I keep my humidifier on 3 on a ResMed machine and have turned it off and not felt a difference. I also turned off ramp completely as they set it for 20 minutes when I was given the machine and I just laid in bed waiting for pressure to build. The diet you have been on shows a lot of will power. If you can figure out how to bottle it, I would be happy to market it for you and get very rich. Keep us up to date on progress!

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Orvwik +0 points · over 2 years ago Original Poster

Haha - will keep you posted on our millions, wiredgeorge!

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doctorlulu +0 points · over 2 years ago

WAY TO GO. AWESOME!

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SleepyJules +0 points · over 2 years ago

That's great news. I'm also experimenting with humidifier settings and ramp settings. After only two weeks I'm very happy with my results. My only worry is a horrible sore on the bridge of my nose which is painful with the mask on at night. I wonder whether I have been sold the wrong mask. It's a Mirage Quattro size Small. I definitely don't have a small face although my nose is quite small. So I have to cover the sore with cotton wool and plaster to fit my mask comfortably.

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sleeptech +0 points · over 2 years ago Sleep Enthusiast

The size of your face is not necessarily relevant. The measurement that matters for fitting a Quattro is the distance between the bridge of your nose and the dip just below your bottom lip. You may have a big head/face but this distance may be quite small, or vice verca. Regardless, if you are getting this problem then any size Quattro will almost certainly cause the same problem. You are better off looking into a Respironics Amara View or, failing that, a Fisher & Paykel Simplus (google for images). The Simplus is softer on the bridge of the nose, and the Amara View doesn't touch it at all.

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sleeptech +1 point · over 2 years ago Sleep Enthusiast

Thanks for the Kudos Orvwik. It's fantastic that you are doing so well. I hope that your improvement continues. Glad to be of help. I am a big believer that education has a very positive on outcomes of PAP therapy, which is why I post here.

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Orvwik +0 points · over 2 years ago Original Poster

Thanks, sleeptech! Have you ever heard of humidification causing Central Onset Apnea? My guess is that my brain was telling my lungs that I was drowning, which caused me to stop breathing.

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sleeptech +1 point · over 2 years ago Sleep Enthusiast

Nope. Never heard of it. That doesn't mean it's impossible though.

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