[Treatment] How to tell if I am getting optimal results from my PAP treatment?

[TryingToGetItRight]

Good evening.

I have been on ASV-PAP treatment since 2015.

I was seen by Dr Barry Krakow at Maimonides Sleep Arts and Sciences.  He is now retired, and as best I can tell, his successor isn't doing things quite the way Dr Krakow was.

I had seen a handful of sleep specialists over the years and had always been turned away and told that everything is "normal", or at least that there is no diagnosable illness they could treat me for.

Dr Barry Krakow said that I had severe UARS with RDI > 50.  In his notes on my report, he wrote, "There was no normal breathing at any time."  I left with a prescription for a ResMed S9 VPAP (ASV) machine which I filled with Second Wind CPAP. (great company if you're purchasing CPAP equipment outside of insurance, btw)

I struggled horribly to get adjusted to using that machine.  It took a year, many different masks at home, and anxylotic drugs to make it work, but now, I have a mask I've been using for years and don't use anything stronger than melatonin to fall asleep most nights.

Around the time that Dr Krakow retired, I underwent gender transition (male to female), and upon my next sleep study, at the same center, but under the supervision of Dr Dawid Rechul, I was titrated to much lower pressure settings.  Dr Rechul said to me that this should be no surprise at all as estrogen is documented to have a protective effect against sleep disordered breathing.

A few years later, I underwent a sleep study again and was titrated to lower pressures again.  The person who read my sleep study to me said that if I hadn't already been prescribed an ASV device, they wouldn't have considered my condition severe enough to warrant the use of ASV.  That's quite an improvement over "There was no normal breathing at anytime."

Why am I here, then?

I suspect that there may still be some room for improvement.  I am mostly functional in my day-to-day life and I have been working on myself in a lot of different ways over the years.  I seem to suffer from some kind of anxiety and ptsd that I've been working with a therapist for and I've made a lot of progress.  I know that a clinical diagnosis of ptsd is correlated with sleep disordered breathing.

I'm attaching a screenshot from OSCAR showing some sample graphs from ResMed.  The top graphs are for the whole night, and below follow several graphs that show individual breaths over about half an hour before an awakening when I got out of bed and visited the toilet.

I am hoping to have septoplasty next year to correct my (mildly) deviated septum; I'm told that should help (plus a crooked nose isn't a good look on anyone)  Another physician I saw told me that he suspects that my tongue could be part of the problem; he recommended a tongue-radiofrequency procedure, but I'm told that insurance doesn't pay for it and I may see improvement by avoiding sleeping on my back, because gravity.

Looking at the graphs, I'm wondering if I might benefit from upgrading to a newer machine or adjusting the settings.  Dr Krakow was difficult to work with, but he is intelligent and passionate and I miss having him on top of my treatment. (I am willing to attach any additional information that may help.)

My youth has come and (arguably) gone and I don't want to show up at the grave having lived a shadow of the life I could have because there was something about my sleep health that I missed.

In other words, I've tried a lot, but I feel like something might not be right.  Any helpful advice is appreciated.

[gainerfull]

It looks like your min EPAP is too low if I had to guess. Your screenshot doesn't show the events you're experiencing but based upon the flow limit data you're likely experiencing quite a few obstructions and hypopneas. If I were you I'd raise the minimum EPAP by 1cmH20 and test it out over a couple night's rest to see if the flow limits come down. If you can post a couple nights of the event flag portion of OSCAR that would be helpful.

[Khavoqi]

Hey there.

I also have UARS and will be going to Dr. Krakow's old clinic out in New Mexico for a titration, probably in the next 2-3 weeks. Hearing your negative feedback about them is giving me second doubts on whether or not I should still go through with it.

Would you mind talking a little bit more about your whole experience with them? Did they ever talk to you about their attempts to normalize your airflow pattern or anything like that in your titration review?

Thanks.

[TryingToGetItRight]

Certainly! I'm curious as to how you already know you have UARS.

Unfortunately, most experiences I've had with sleep doctors have been terrible. I've been told over and over that I have no treatable condition or that I have only "mild" sleep apnea.

In spite of the experience being not as good as before, it is still, by far, the best.

When I first visited the new "Sleep Spot" clinic, as Dr Rechul calls it, I was given an overnight titration and had a televisit with Dr Rechul. $900 for the overnight PSG and $250 for the televisit with Dr Rechul, IIRC.

Last winter, I visited again and got another titration study done, and that's where my experience started going downhill. They told me that according to their records, I wasn't an active patient and needed to have a televisit with one of their non-MD providers. I can't remember if she is an NP or PA, but it felt almost like trying to play telephone with the doctor.

The titration was conducted similarly to what I experienced before, and I was discharged at 5 AM, a bit earlier than I remember from last time. They have different equipment in their lab, and the pressure felt distinctly different from what I am used to, so I was very glad that I brought a zolpidem tab just in case there was anything uncomfortable that I needed a little extra help sleeping thru.

I have been using ResMed S9 VPAP for years, and I was told after my sleep study that they thought that this was odd and that my sleep apnea was not severe enough to warrant prescribing that machine, but they nevertheless gave me new settings to use, several cmH2O lower than what I was using before. I had another televisit with the non-MD, and I was charged $250 each for these visits.

I used to pay $250 per hour to see Dr Krakow, and I am now being charged $250 for about 30 minutes with the other provider, so I literally don't get to speak to the doctor at all, tho he does do the report about my sleep study.

It's still better than the absolute garbage non-care and gaslighting I've experienced with other providers who tell me "There's nothing wrong", but it isn't as good as it used to be.

If you haven't read it yet, I do recommend Dr Krakow's new book "Lifesaving Sleep"; I believe it is written better than his previous book and it provides new recommendations that are immediately actionable.

Also, for what it is worth, I had been in touch with him by email because he said on his web site that he is doing televisits with patients again, but he stopped responding to my messages after I told him that I have undergone gender transition. He's a really smart doctor, in my view, but also a man who is clinging to old and very harmful conventions about how to live.

UARS sucks and I hope you find relief. Please feel free to stay in touch and share your experiences. "Apes together strong."

[staceyburke]

He most likely thinks it is upper airway because the flow limits are very high.  We use EPR (exhale pressure relief) to help Flow limits.  I really have little to no experience of the Resmed cpap you are using.  IF it does have EPR I would set it to 3 and that should help.

[stevew77]

Your ASV is about as good as it gets, unless you need a non-invasive ventilator such as an iVAPS due to COPD or other severe breathing problems. I would suggest setting your EPAP max to 10 or slightly higher, if it is not already set there, and PS max to 15, based on your EPAP max setting. It should be set to the ASV Auto mode. You are probably eligible for a AirCurve 10 ASV upgrade if you are still using a 9 version. You should be able to see IPAP go up to 25 if you are having several obstructive apneas. Might as well use your ASV pressure to the full extent when you need it.

[Khavoqi]

Thanks for the in-depth response.

My reasoning behind having UARS is based off multiple things.

For one, I had a relatively low AHI (6), but a relatively higher RDI of 15. The higher proportion of respiratory disturbances points to flow limitations or RERAs being the primary issue, rather than clear cut apneas. 

Secondly, I fit the profile of the typical UARS patient. I'm young (19), have a BMI of 22, have narrow / underdeveloped jaws, have slightly crooked teeth, etc. I also seem to grind my teeth at night, which is an indicator of some sleep issue going on. I used to wake up in the middle of the night to pee, which is also an indicator of a sleep issue. I basically just evaluated all my different symptoms and issues and looked for the most probable cause of it; UARS seems to fit the bill pretty well.

Thanks for letting me know about his televisits by the way; I thought he had completely stopped practicing after he retired. I'll try and schedule something with him and see how it goes. I'll also give his book a read and see what the Krakky Kraks has to say in regards to treatment options. 


Good luck with your journey!

[McDee]

Hi, I took a look at the charts you've shared. I think the flow limitation you're seeing is most likely an artifact of high ASV pressure support, as discussed by Sleeprider here:
https://www.apneaboard.com/forums/Thread...#pid303383

Your air flow curves for individual breaths also look pretty good to me. Not every breath is going to be perfect and consistent throughout the entire night. ASV therapy can also introduce some minor artifacts and irregularities from the rapid pressure changes and the exact way it delivers PS. But I don't believe this is a significant problem by itself.

What seems more significant to me is all of the changes in your respiration rate. There's a lot of variation there, which can be seen in the flow charts as a change in breath frequency, with breath timing either compressed or stretched. And can be seen most directly in the respiration rate chart. It looks like your respiration rate is low whenever pressure support is high. And for long periods of time... for the better part of an hour in the middle of the night around 3 am. I think most likely, too high PS may be suppressing your natural respiratory drive, although it's difficult to see exactly from these screenshots.

What I've seen in my own and some others' ASV data is that the algorithm can be too aggressive, and can get stuck in a bad feedback loop. If I momentarily stop breathing such as from an arousal and re-positioning, the ASV will try to maintain ventilation by increasing PS to the Max to initiate/force a breath. This is known as the backup rate, and it will often cause me to take a very deep breath. Since I took a very deep breath I won't need to breathe again for a while. The machine will see that I'm not breathing and deliver a second backup breath at Max PS. And so on and so forth, for long periods of time. Turning what would have been a single ~10 second clear airway / CA apnea event into 10 minutes or more of unnatural breathing, with the machine's backup rate breathing for me, and an abnormally low respiration rate.

With ASV machines, the OSCAR Mask Pressure chart shown directly below the Flow Rate chart is often the best way to see exactly what the machine is doing. And zoomed in enough to show breath detail at interesting points or transitions. It would be interesting to see exactly what's going on around the times your respiration rate drops. For example, to be able to pick out the subtle difference in timing between the machine raising pressure to initiate a backup breath flow, versus raising pressure in response to a spontaneous breath flow. In other words, which graph goes up first will tell you whether a breath is a machine backup breath or a spontaneous breath. I wish these machines reported backup breaths as a metric and/or allowed the backup rate to be disabled, but they do not.

Hope this helps!