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Chart Envy
#11
RE: Chart Envy
Hi Rob,
I had the 'central emergent' apnea when I first started treatment as well, so the treatment was worse that my original OSA.
According to the studies, the issue resolves itself within a few months for the majority of people if you continue using your machine. Your body just needs some time to adjust to the increased pressure. That is what happened to me. After the first month the centrals were reduced considerably.
For the next while I would suggest that you use the machine for part of the night following the changes that Sleeprider suggests. If the centrals are reduced, use it more. Sleeprider's settings have helped a number of people with similar issues.
For me, the talk of ASV is too early. You need to give your body a chance ro see whether the issue will resolve itself.
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#12
RE: Chart Envy
I agree with Mogy that with many people the problem self-resolves in time, however I have rarely seen that be the case when AHI is well over 30.  In any event, the time on CPAP is not wasted if it finds a pressure that resolves obstructive apnea.  My observation so far is that there is a direct correlation between AHI and pressure, with higher pressures either causing, or being caused by higher pressure.  What we know is is that higher pressure does not resolve either obstructive or central events.

Let's break that down a bit.  the correlation is pretty obvious here.

[Image: attachment.php?aid=7156]


and here:

[Image: attachment.php?aid=7158]


Even on the best nights, the lower pressure is associated with lower events.

[Image: attachment.php?aid=7159]

In an unexpected twist, the AHI is consistently bad at a fixed pressure of 9.0.

[Image: attachment.php?aid=7167]

I often tell people with complex sleep apnea, the the most consistent aspect of their treatment is that it is inconsistent, and this is true for you as well.  I expect you will see good nights and bad.  I think that when your doctor makes a suggestion, you should try it.  He is in exactly the same situation as all of us with regard to CPAP therapy; it is mainly a practice in trial and error.  You try, it succeeds or fails.  That is how we learn what works and what doesn't.  We learn something more either way.  This is not a danger to your health, but it is an important aspect to resolving a difficult problem, using the "expert's" experience of what "usually" works.  When those expectations are not met, we start looking for alternative solutions.  Don't let this frustrate or frighten you, it's part of a process that you will be going through for a couple months.  I have no doubt you will ultimately be on ASV, or prove me to be epically wrong. Using fixed pressure, actually tell us more than variable pressure. We are trying to find a pressure that minimizes CA and OA events. Since we don't know whether pressure causes events or is triggered by events, it is a tedious process to titrate a complex problem like this.
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#13
RE: Chart Envy
I really hope that I am proven wrong and you hit a pressure that is just perfect for you and you can go the simple route, but I don't recall that I've seen event numbers that high while using CPAP.

I am glad that you have a little time to try things out with your machine if you want to experiment.

ASV is a machine that insurance hates to shell out for and you will likely be stair stepping through settings and modes to get an ASV. Fortunately, and as many can bear testimony here on the forum, once you go through the process and get a machine, the therapy is phenominal. The ASV is a wonderful machine in my opinion and I think it has the potential to significantly impact the quality of life for those who use it.
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#14
RE: Chart Envy
Hi Rob,
Are you on any drugs?
CSA and some drugs don't mix well.
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#15
RE: Chart Envy
Hey all, bit of an update

1) no not on drugs except Zopiclone when first on timezone for jet lag, 1/2 a tab

Managed to get an appointment with sleep doc yesterday which resulted in a number of things:-

- New mask tried for the first time last night, a Brevida nasal pillow which was fantastic last night, quiet, comfortable and I was able to deal with higher pressures no problem - got up to the toilet and fell back asleep before I managed to put it back on - oops
- He is convinced that I don't have CSA and that this is my body reacting and it will go over time - he gave me the technical name but can't remember sorry
- He wants me to have a (titration?? I think) sleep study which Sleeprider suggested which will happen over the next couple of weeks because of the CSA signs (to rule it out) which hopefully insurance will pay for, not free here unfortunately - this should also presumably give me 'my pressure' too ?
- He wants to keep trying at higher pressures / range - yes I know he's probably wrong but last night when I had the mask on was considerably better so as I get further back into timezone lets see

The second section of the chart I was actually awake for as couldn't get back to sleep and just thought I'd keep hooked up to see what the chart looked like while I lay checking my phone - interestingly it showed some CAs but what it really demonstrated to me was that I could actually handle higher pressures with the right mask so thats good at least, lack of audible leakage really makes a massive difference psychologically ..........

Going to follow his range advice for now to see what it does over next few nights, then I think I might try fixed again.

I'm a bit more relaxed than yesterday when I was panicking about the mega high numbers, if these keep moving down then maybe auto will tune in, anyway wanted to provide an update and say thanks for all the support to date, it has really helped me to start to climb the learning curve about this - I'm not ignoring advice but I do need to follow the doc too for now until after the study I think ?

Keep the thoughts coming and sorry but I feel compelled to follow the doc for now, it took me to sub 10 numbers when properly in a timezone before so who knows ? Its a journey as many have said, going to keep posting on this chain to track my trials and tribulations.

Rob


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#16
RE: Chart Envy
Congrats on the new mask.  I haven't tried that one yet, the headgear looks very similar to my Airfit P10.  And it looks like it has a diffuser on the vent to "reduces noise and air draft".  Very cool.
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#17
RE: Chart Envy
I think the best approach is to follow the doctor's advise and comply with his direction on pressure...for now. I am equally convinced he is wrong, as he is of his being right. The titration test will reveal whether the problems are central or obstructive, and should move you towards appropriate therapy. The only thing I'd like to see is a more open-minded approach by the doctor to accept the evidence he can see, and include an evaluation for BPAP with backup rate as part of his titration exam in the event CPAP fails.

As a scientist, I have always been puzzled by those trained in science disciplines that remain convinced that the outcome they expect is somehow immutable in spite of evidence to the contrary. Sleep apnea therapy is a pure science in that it presents a problem that requires a trial and error approach to resolve. In most cases we start from the hypothesis that the problem will be obstructive; however when therapy directed to resolve OA fails, or results in pure CA and H events, then perhaps one should be looking at the alternative possibility. Doubling down on OA seems a folly to me.
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#18
RE: Chart Envy
It will all come out in the wash as they say.

It seems as though you have a good attitude about therapy even though you have experienced some warranted anxiety. I encourage you to keep a positive attitude about the therapy because getting discouraged can happen easily. You likely don't feel good already and now you have some new hurdles ahead of you, but the end results are very much worth the effort you have to exhert to get to your goal.

Keep learning about sleep apnea and apply all of the knowledge to yourself so you can have conversations with your doctor at or above his understanding. I read many stories of patients going in so armed with knowledge that the doctor will simply agree and move on. A wise doctor will recognize this scenario and go along with a patient's opinion, after all, the informed and knowledgeable patient can and does decrease the caregiver's workload.
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#19
RE: Chart Envy
Hi all,

Bit of an update......

I have now been referred to the hospital sleep doc and have been messing with pressures with her - she is very interested in the Sleepyhead trends and working with me but we're still not making great progress and I had a titration study booked in parallel.

The titration study happened last night and the techs were tight lipped about the outcome saying I needed to speak to the DNE but will hopefully get a copy of the results......being as how I paid for the study after all. I will then use that with the hospital doc

One thing the tech did suggest is a full face mask as even with chinstrap and taped lips I am leaking out my mouth so would appreciate quiet, comfortable full face mask suggestions for front slipped who sleep with head rested on the pillow on one side ? i.e. one thats not too blowy / noisy - I love my Brevita as its quiet. Wondering about the dreamer full face as seems soft and unobstructive - will go look at reviews now.

Will know the results in a week or so, is it complex or not and in the meantime will keep plugging away - here is a trend update, as always comments appreciated - let me know if you want to see any other single days ?

Anyway - onwards...........

Rob


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#20
RE: Chart Envy
Thanks for you post, I feel really sorry for you stay positive. You clearly have complex sleep apnoea, with elements of both obstructive and clear airway events. You are not on the right machine to treat your condition so I hope you will eventually make progress to the correct machine (an ASV or a BiLevel with a backup rate) good work on reducing your events but your treated figures are still too high.


For a FFM I use a resmed F20 airfit (the silicone one) it works great try and get one with the new silent elbow but I prefer the Resmed P10 nasal pillows for their lightness and minimalist design but I understand the challenge of mouth breathing.
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