RE: Chart Envy
Well I saw the hospital sleep Tech today, handed over the SD card so she could review the last 9 days of ASV treatment and after she'd looked at the data she shouted out to the waiting room "hey come on in miracle man" - think she was impressed with the results and tweaking you guys helped me do to settings.
We talked for a while about my journey etc, she went off and spoke to one the docs and came back with a prescription for me for an ASV - the doc was convinced from looking at the data that the biggest lump of centrals was indeed altitude caused due to my home/away lifestyle.
Thanks again everyone for all your help in getting me here - have asked my insurance company for pre approval for spend on a new ASV and then I'll be all set with home and travel machine.
Last night was the 2nd night back at altitude, typically previously my worst night for centrals and this was the first time without an altitude jump and not bad numbers for the last two nights and feeling just great :-)
Rob
RE: Chart Envy
Rob,
That’s brilliant it’s taken a year to get to this point but what a great looking graph.
Jason
RE: Chart Envy
Well zero events is what we expected with ASV, but how do you feel? It's been a long time coming..
RE: Chart Envy
Great results!, been following this thread a long time and its nice to see such a conclusive ( but expected ) resolution.
To me in my naivete' it begs the question, personally for me is, how much more comfortable would an ASV machine be over a standard CPAP ignoring the apnea correction content.
RE: Chart Envy
Hi Rob,
SO now your home at altitude how is the ASV doing ???
RE: Chart Envy
Jason,
The easiest return home ever - completely bump-less. 4 of 5 nights since getting home have been flat 0 !
Now sunning myself in Palm Springs..... well actually holed up in a rather nice hotel room with a head cold but a lovely view of a golf course and the hills. Even with a bit of mucous blockage, the ASV has been a dream - look at the difference between an early night on it and now, its really learning and adapting and all my measures are back to my normal - RESP rate, inflow and outflow and volumes.
I returned the loaner machines to the narrow minded sleep doc, (unfortunately he wasn't there) but I'd love to see what the Tech put in my notes for the doc to read ! The Tech is a lovely guy who has been nothing but helpful and understood I was not coming back because of a narrow minded doc who refuses to prescribe the correct treatment for complex apnea so all good there too - they refunded the monthly rental so even not out of pocket for my misadventures into ST.
Its going to take some time to get a pre auth from my UK insurance company for a new machine, I can see them building hurdles but in no hurry as my low hrs one is working just fine - happy days even if feeling a little under the weather .....
My friend with 'undiagnosed' apnea is doing great an wants the second machine Airsense for his cabin so even beginning to clear out the closet of 'trials' - one dream station and an Airmini to go !
Thanks again guys.................... treated !
Rob
RE: Chart Envy
Thought I'd give an update a month into using ASV - my average AHI is 0.09 since changing setting and really beginning to feel much better all round and almost human. I honestly find it the most comfortable treatment to date so if considering ASV don't be put off by it blowing at you - its very natural and comfortable and the high pressures it spikes to really hasn't caused me any discomfort or leaks.
I got back to Calgary (altitude) 5 days ago and really noticed the machine working a little harder with IPAP pressure but AHI stayed at or about zero.
I attach an early trend and last nights to show how things have settled down - thanks again folks, any comments / further thoughts appreciated ?
The overall trend tells quite journey story, very glad I stuck with it !
Rob
RE: Chart Envy
Update
I started my CPAP journey a year ago today so thought I should provide a little update and some thanks
The chart attached shows just how lumpy my treatment was until I finally got to ASV, my average since has been an AHI of 0.08 with my highest reading being 0.44 - I must say I feel infinitely better and timezones are so much easier to move into, now if only I could travel less.
Here's what I've learned along the way
- Members on this forum give an inordinate amount of their own time answering the same questions over and over again with patience and charm
- I wouldn't have got to this point without Sleeprider, Bonjour, JesseLee, Jaswilliams, Sheepless - thanks soooo much guys
- Chin tucking is a major cause for many people including myself and cervical collars are no biggie once you get used to them
- Altitude and timezone change combined seems to be the culprit for causing central apnea for me - ASV takes care of it now but just works a little harder for nights 2-7 back home at altitude typically
- Fixed pressure seems to work just fine for me at other times when my apnea is more obstructive but I'm not swapping between machines
- If you have complex apnea then you really want it to be obstructive and can convince yourself your treated when really you're in a kind of remission period, it comes back, don't fool yourself as it just delays the correct treatment - if your treatment is consistently inconsistent then move out of denial quicker than I did
- Change pressures gradually, my body reacts badly to large or often changes in pressure
- You can train yourself to sleep in a certain position and move to softer collars, I may even try without one now
- Mask choice is a super personal thing, recommendations mean nothing for FFMs, it all depends on your face shape
- Mask leaks seem to be an issue for many but always solvable through mask choice and position
- Resmed make amazing machines which are super quiet once you get the mask sorted
- Quiet elbows make a massive difference to how quiet CPAP is for partners
- Sleep Docs (even good ones) have massive blind spots and can get you started on your journey but advice here is so much more valuable
- Tap water works just fine and mineral deposits are easily removed with Coke when you can't get vinegar
- Travel machines really aren't worth the bother, the size is in the rest of the stuff not the machine
- Hose caddies are my top tip to prevent leaks and awakenings, they prevent the mask from being pulled off your face by movement
- Once a week thorough clean works just fine with no adverse effects
- Pressure is not to be scared of - the body adapts and I don't even notice ASV kickstart spikes any more, if you need higher then try it
- Customs everywhere understand CPAP, its never an issue to travel with one
- Masks last a long time providing you clean them weekly properly in baby wash - 4-5 months for an F20
- Pillows make a massive difference, learning to sleep with my chin over the edge of a scrunched up soft down pillow works bet for me
- An ST machine is not for treatment of complex apnea, it sort of works but the timed puff is really unpleasant to breath against
- ASV feel like the most natural machine to breath with from all the other types tried - forum can scare you off but it works naturally for me
So that's my story so far, happily on ASV, sleep well most nights and generally feeling much more amongst the living - if I can do this so can you, for those in the early stages of a slog, keep the faith, thanks again guys.
Rob
RE: Chart Envy
This probably belongs in a Wiki somewhere.
RE: Chart Envy
wow. great list. congrats on your success!
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