ASV progress: born again and resurrected

[ameriken]

So, June 9th is when I became born again with my new Respironics ASV. Baptized in distilled, humidified water I was resurrected and ready to start a new life.

I've been a faithful and dedicated disciple of CPAP since that first day. I have never missed using the machine for single night or a single nap. However, I'm not quite in sleep heaven yet as it wasn't the success story I hoped it would be.

In my first couple of months my AHI's ran anywhere from 3 to 12. Most in the 5 to 10 range. Good, yet it bothered me because 5 to 10 is still considered mild sleep apnea. This must be CPAP purgatory because I'm way better than I was before I started therapy, but nowhere near where I should be.

I do read my CPAP bible on a daily basis, the Cpaptalk.com version. So many times I've read that for other followers it often takes time to really feel better. I figured I should relax, give it some time, watch my reports, and it should slowly improve and I'll eventually arrive in nocturnal paradise.

But instead of getting better, in September and October I noticed I was backsliding. It took a slow but sure turn for the worse. I was being pulled back down to the cold, dark, airless depths of Apnesia. I was rarely if ever getting to 5. In fact, my AHI's were starting to reach well into the teens.

Here is a typical night from October:



Many nights were just like that and I was becoming once again possessed by brain fog. The AHI's were higher and all over the place, one night a 12, then a 7, 10, 8, and then 17. I even hit a 20. I realized I'm backsliding from mild sleep apnea to moderate sleep apnea.

That did it. It was time to break the chains of this bondage. I decided to put aside my old compliant nature and follow the guidance of the cpaptalk.com bible. But to do that, I've got to go against the high priests of sleep...the MD's and RT's, and do something considered a mortal sin in the medical community. Yes, I have to change my pressures (melodramatic music please).

With a minPS=5 and a minEPAP=7, I increased them to 6 and 8 respectively. It felt better, and the next couple of nights I had 3's, 4's and 5's. So I decided to up it one more to 7 and 9. I also turned Flex off and went with a rise time of 4.

Amazing things started to happen. My AHI's suddenly dropped to 2 and 3 and 4. I made a couple more small tweaks and changed the backup rate from auto to 12 BPM, Ti 1.5 secs. And since those changes, my AHI's have all been under 5. In fact, in the past 3 weeks I've only hit 5 once or twice. And in just the past 7 nights, six were an AHI of 1 and one night was a 2!

Here' s a day from the last week and this is what it typically looks like now:



The brain fog is lifting, my energy is slowly coming back, I am hoping and praying that my conversion continues and that I and everyone else here will reach that paradise of perfect and restful sleep. In the meantime, I will continue spreading the good news of CPAP and I hope we can all help convert hopeless sleep apnea victims into born again CPAP disciples.

Thank you for your help and support and the time you put into this forum. May Respironics Bless you all (or Resmed, or whichever you follow)

[napstress]

Congratulations, Ameriken! I know you had been struggling lately and am so happy that your numbers are so beautiful and you are feeling better. Your machine sounds intricate, so I am impressed that you were able to change your situation with just one set of carefully thought-out tweaks.

[bdp522]

Congrats on taking charge and doing so well!! I, too, hope your 'conversion' continues!!!! Keep up the great work!!

Brenda

[moresleep]

Congratulation on making it work!

[teknomom]

Hooray for you! An inspiring story for those of us about to start the journey.

[Starlette]

Hey there Ameriken. Man, how did you exist with 17 AHI's??? I barely exist with 6 to 10!!! I'm excited for you that you've been able to exorcise those demonic AHIs back to zombieland/fogbrain hell!!! Since I got my FFM, I'm doing so much better too!

10/27/11 1.9
10/28/11 4.9
10/29/11 6.0
10/30/11 6.2
10/31/11 2.4
11/01/11 3.7
11/02/11 4.6
11/03/11 1.6
11/04/11 2.6
11/05/11 1.0
11/06/11 1.1

I won't show last night. Slight hic up for less than 2 hours. Before I went to bed 11/4, I unstrapped and restrapped my mask. It's lookin great!
Friday 11/04 I sent my Primary Care Physician a copy of my therapy and masks to find out what the best System Resistance Setting is to optimize my therapy, especially with my FFM. In fact, I'm not going to do anymore tweaking till I hear back from my PCP. Before long, I know I'll be getting the full benefit of my therapy. Ameriken, I am so happy for you, yay!!!
*high 10*

[RationalEntropy]

The baseline study showed hypopneas (NREM AHI: 22, REM AHI: 27). When bipapped the hypopneas became "clear airway", and the brain fog quickly returned with a vengeance. Bipapped nightly AHI was commonly in this range: 5-12. After three weeks or so insurance approved the asv it was shipped, and with the initial settings there were... hypopneas. It was like a Law of Conservation of Apnea/Hypopnea, or something. Gradual tweaks commenced, and before I knew it every nightly AHI fell into the range of 0.5 - 3. After two weeks of asv I'm starting to feel like myself again. I'm attempting to show that I can relate, and that it is awesome to not feel zombie-like.

Much of this is covered here:
viewtopic.php?f=1&t=70406&p=652579#p652579

Summary: Increasing EPAP Max to my Bipap EPAP while leaving the EPAP Min at the prescription, and increasing the minimum Pressure Support has almost killed off my hypopneas.

By the way, Congrats!

[ameriken]

Thanks everyone, I squeaked out another 2 last night, this is just awesome. And thanks to the few ASV users here, I've read almost every ASV thread and I think I finally have an idea how this beast works and how to tweak it.

Entropy: great job! Good point about the hypopneas, my AHI's were mostly hypops as well.

Starlette, I'm glad that mask is working out for you. Keep up the good work! I wondered too how I could exist with 17, but it was better than before the sleep study. I was feeling it though.

Again, thanks to everyone for their input in the forum.

[Kody]

In the meantime, I will continue spreading the good news of CPAP and I hope we can all help convert hopeless sleep apnea victims into born again CPAP disciples.

Does this mean if I'm admitted into your flock that I will have to wear special tennis shoes and wait for the space ship?

Seriously, congratulations on your continued success I know its been a rough journey and I wish you many more nights of low AHI's and restfull sleep. I also think you are right that your probably paying off some of your sleep debt, as a lot of us are still doing also. In time I bet your going to be feeling even better in the near future, Good Luck.

[ameriken]

Does this mean if I'm admitted into your flock that I will have to wear special tennis shoes and wait for the space ship?

Nope, no special tennis shoes or spaceship, but you do have to wear your mask and wait for the alarm clock.

[deltadave]

That's certainly a great result, but I have a question.

While respiratory events have disappeared, could this be a result of "fooling" the algorithm? With an increased PS attack, and, more important, a very aggressive respiratory rate (these breaths are sent in every 4.6 seconds, pretty much guaranteeing that the machine cannot score an apnea)(closer examination of waveform might disclose the behavior of hypopnea)?

I raise this question because Patient Triggered Breaths have dropped precipitously from 87.0% to 22.6%, and the Minute Ventilation waveform (albeit a very coarse measure of sleep stability) actually looks a little better during the "conventional" settings.

TIA.

[ameriken]

That's certainly a great result, but I have a question.

While respiratory events have disappeared, could this be a result of "fooling" the algorithm? With an increased PS attack, and, more important, a very aggressive respiratory rate (these breaths are sent in every 4.6 seconds, pretty much guaranteeing that the machine cannot score an apnea)(closer examination of waveform might disclose the behavior of hypopnea)?

I raise this question because Patient Triggered Breaths have dropped precipitously from 87.0% to 22.6%, and the Minute Ventilation waveform (albeit a very coarse measure of sleep stability) actually looks a little better during the "conventional" settings.

TIA.

Interesting points, I thought about those as well when I saw the difference in PTB's.

PTB's and AHI's are not necessarily related. Someone can have 100% PTB's and have a high AHI (I've seen those reports posted in another thread).

Just because the machine is pushing a breath every 4.6 seconds doesnt mean it can't score an apnea. When it pushes that breath and senses an obstruction that doesn't open, then it increases the pressure on the next breath. If it still doesn't open, then we are at just about 10 seconds and it should score an apnea/hypopnea.

Also, setting it to 12 BPM shouldn't fool the algorithm. If it does, then I would think Respironics has an enormously faulty product for adding an adjustable feature that defeats it's own purpose by fooling it's own algorithm.

I think it's working as designed and is allowing me to breathe more normally and is effectively dealing with actual and impending apneas and hypopneas.

[Bright Choice]

Congrats! I have been watching the ASV thread but it got too complicated for me

Persistency pays! Keep up the good work!

[deltadave]

Someone can have 100% PTB's and have a high AHI

Absolutely, happens all the time with sub-optimal pressures.

Just because the machine is pushing a breath every 4.6 seconds doesnt mean it can't score an apnea. When it pushes that breath and senses an obstruction that doesn't open, then it increases the pressure on the next breath. If it still doesn't open, then we are at just about 10 seconds and it should score an apnea/hypopnea.

However, given your current pressures and history of central disturbance, the likelihood of an obstructive event is small. More likely they are all central.

Also, setting it to 12 BPM shouldn't fool the algorithm.

Perhaps "overriding the algorithm" might be more accurate.

The ASV algorithm operates on 2 premises. While it aggressively attacks central apneas, it also reduces the pressure during normal breathing in order to reduce the potential for ventilatory overshoot. Those high pressures and respiratory rate have completely knocked out ventilatory drive as evidenced by the extremely low PTB%. This machine is now configured as a Control Ventilator.

The question to ask at this point would be, "Is sustained hyperventilation a bad thing?"

I suppose we could ask Dr. Buteyko...

[ameriken]

I did have some concerns before going with the backup rate because I wasn't sure if setting a BPM would perform the same way as on auto, or like you said, would it act more like a ventilator.

Here is why I went with the back up...after increasing my pressures in October, for the first time my AHI's dropped consistently to 4 and under. While I felt a bit better, I was still dragging, with occasional minor headaches in the morning. I don't have an oximeter at home, but my sleep study states my O2's during my sleep studies while on the machine were still in the 80's. I believe this is because I was also diagnosed last year with 'emphysematic changes' in my lungs due to my prior smoking history.

Nevertheless, the sleep doc wrote in my report that if I wasn't having success on the settings they recommended, that she 'may select another backup rate'. (She's at the VA and I've had difficulty getting to meet with her, instead I have a useless sleep doc).

OK, so my AHI's are 4 and below, yet I'm still not quite there yet. My normal BPM seems to be around 13 to 14 at night. When my PTB's drop (usually they range in the 60's to 80's) the auto kicks in at a rate of 10 bpm. I figure if I normally breathe at 13 or 14, then at 10 bpm my O2's might be suffering and adding to my fatigue, even though my AHI's are now below 5.

So, I decided to go with a backup rate of 12, which I thought would be low enough to not interfere with my usually 13-14 bpm. Not only are the AHI's still better, but I'm feeling better after making that change.

Is the BPM interfering with the machine's algorithm? I don't know, and as I said, I'm not sure why Respironic's would have a feature that would interfere with it's own algorithm. Besides, it is still registering both clear airway and obstrucitve apneas on my reports.