Night 8, it's already Love - Hate. So glad I found you guys!

[Sleeprider]

Flow limitation is something I have frequently seen in members with CA.  This chart shows the classic flow limitation profile, most often associated with a restricted or obstructed airway.  There appears to be respiratory effort, but the airflow slows significantly after initiation, and the rate of flow continues to slow until you cycle to expiration. In this sequence, flow continues to diminish until you arouse and have recovery breathing.

In this case, looks may be deceiving.  Since you are on ST, the machine follows a weak spontaneous effort, but since you are not expending enough effort to permit a full breath, the ST is not providing enough pressure support to compensate for your lack of effort.  So the airway is open, and with too little pressure support, a flow limited breath occurs that "looks" like restriction.  The ASV would have increased pressure support by as much as 15 cm (21/7) instead of the constant 11.6/6.6 pressure the ST provides.  That is the "adaptive" part of ASV.  If that pressure support boost failed to cause a full breath, then in ASVauto, EPAP would increase to clear obstruction.

The ST is designed for chronic obstructive pulmonary disease and uses pressure support to overcome the restricted airway or lung on every breath.  It is typically set at PS more than 8.0 cm to do this.  The backup rate will then provide a breath in the event of a central event, but the machine is doing most of the work of respiration on every breath in its intended application. It cannot supplement or provide a breath at constant PS 5.0.  So what we are looking at is the inadequate flow induced by the ST, not an obstructive flow limitation. With central apnea, you only want to rely on the ventilator when it is needed, and rely on spontaneous effort with low, or no pressure support.  This provides a normal respiration for the idiopathic CA patient, whom is adversely affected by constant high PS.  If you raise PS to where the machine can compensate for your CA, you will be nearly 100% reliant on the machine, because pressure support suppresses respiratory drive in people with CA. 

I'm repeating myself to make a point.  You are on the wrong machine, and if your admitted incompetent doctor continues to rely on an incompetent or conflicted sales representative, that is not going to change.  You need to grab control of this fiasco and tell your doctor that you have acquired a better understanding of the problem than he has.  He either needs to serve your needs, or you need to move along to someone that can.

[FE350]

Thanks Sleeprider.  I get it, about my doc and the rep.  I think I mistakenly understood you to comment that you thought my breathing was indicative of obstructive sleep apnea, thus changing your view of my circumstances. 

My wife has said simply, "You're able to breathe, you just need something to tell you to do it."

[FE350]

Thanks pholynyk.  I feel like the machine is controlling me all night long, and I don't need that.  it's excruciating, trying to get my doc to come along on this trail with me...

[SarcasticDave94]

Thanks Sleeprider.  I get it, about my doc and the rep.  I think I mistakenly understood you to comment that you thought my breathing was indicative of obstructive sleep apnea, thus changing your view of my circumstances. 

My wife has said simply, "You're able to breathe, you just need something to tell you to do it."

There's one description of an ASV IMO.

[FE350]

Thanks Dave.  She's put up with a lot 

[Sleeprider]

Thanks Sleeprider.  I get it, about my doc and the rep.  I think I mistakenly understood you to comment that you thought my breathing was indicative of obstructive sleep apnea, thus changing your view of my circumstances. 

My wife has said simply, "You're able to breathe, you just need something to tell you to do it."

My original comment was based on the appearance of your flow rate graph resembling classic flow limitation.  It was your follow-up question that made me think about your problem and how the ST machine was interacting to create this pattern.  I am guilty of the same thing I say of many doctors; shallow thinking based on what I expect, rather than consideration of the individual and problem solving.  I hope my clarifying follow-up post made up for that.

[thibaulthib]

Hi FE350,

Jumping in again :-) Didn't read everything but understand you are still not able to use ASV, right?

FWIW, Just wanted to say that the AirCurve 10 ST-A version, and only ST-A (not ST), is also powering iVAPS mode which may be of interest if you are not able to move to ASV.

IVAPS targets minute vent instead of tidal volume, which basically adjust the pressure support on a breath-by-breath basis. It is not as intelligent as ASV because it does not remember your last minute breath, but intelligent enough to provide you with a much higher pressure support when you basically don't breathe, and lower one when you breathe properly on your own.

I have used that mode, it is very easy to set it up and works very well (but useless in my case, ST is enough for me, lol).

[FE350]

Thanks T.

Update, I saw a new doc yesterday, recommended because he’s a great pulmonologist, and has access to Dr. Stephen Brown, Long Beach, Ca., who is no longer seeing new patients, but is apparently the ASV guru. He was out of his league(new doc) with my charts, but committed to consulting with Dr. Brown. Maybe I’m on my way to the right machine.

Very troubling for me, in my original at home sleep study, it identified 1 OA and 19CA. Yet on the titration study, the tech reported she completely eliminated my OA’s and recommended the BPAP ST. It’s as if she treated me for OSA. I don’t get it...

[thibaulthib]

Thanks T.

Update, I saw a new doc yesterday, recommended because he’s a great pulmonologist, and has access to Dr. Stephen Brown, Long Beach, Ca., who is no longer seeing new patients, but is apparently the ASV guru. He was out of his league(new doc) with my charts, but committed to consulting with Dr. Brown. Maybe I’m on my way to the right machine.

Very troubling for me, in my original at home sleep study, it identified 1 OA and 19CA. Yet on the titration study, the tech reported she completely eliminated my OA’s and recommended the BPAP ST. It’s as if she treated me for OSA. I don’t get it...

Don't give up, but to be honest, if it is taking too long, just buy the machine without claiming it to your insurance (I don't know how it works in US?). I know this is not cheap but some suppliers have amazing deals.

In Singapore, nothing related to sleep is reimbursed, regardless you are foreigner or Singaporean, even with the best insurance...

In France, it's covered by the social security, but you must push hard and see many doctors if you want to be treated with the right machine... And it does not always work so you end up buying the machine on your own !

Example with my mum in France:

I convinced her (1.60m, 55kg) she was probably doing sleep apnea, because:
- my grandma (her mum) is having sleep apnea (PSG showing AHI = 40, 100% of OA) for the past 7 years
- I discovered 6 months ago that I am suffering from it too (my PSG was showing AHI = 11, 100% of hypopneas), and it evolved to Central and very low tidal volume
- She herself has bipolar disorder, panic attacks for no reason, wakes up always tired, always depressed, etc. You get me.

She went to see her pulmonologist, had a PSG. Results: she spends 90% of the night snoring, and her AHI is 10 (OA and H). SpO2 min: 82%. The pulmonologist said "You don't suffer from sleep apnea! All good!" I could not believe it. I was so angry!

I asked her to buy the Contex/Pulox Wrist oxymeter: After 2 nights with, YES she is doing sleep apnea! Big desaturation, heart rate increase, etc.
Link to the thread in the forum, I thought the oxymeter was broken, haha: http://www.apneaboard.com/forums/Thread-...attern-Bug  

Since the bloody pulmonologist did not agree she was doing sleep apnea, I asked her to buy on her own a Dreamstation Auto CPAP.
Since then, my mum told me she never felt as good in the past 20 years and had never felt so rested, I was sooooo happy ! 

But I've found out her tidal volume is like me, extremely low... So her sleep could be even better if she was having a nice VPAP Resmed !

She went to see her pulmonologist last week in order to get a 24h Holter, in order to show the pulmonologist the heart rate spike up, and the SpO2 spike down. She will wear it in 2 weeks time. I also asked her to wear the Contex that night, without the CPAP of course.

If she can't make any more progress (= getting a VPAP Resmed for free) because of the way doctors consider sleep apnea in France (= Low AHI means everything is good), then she will buy a VPAP Resmed on her own (4 months after having purchased the Dreamstation).

I may even use my own prescription to purchase the VPAP Resmed in the US and make it delivered to her in France.

In other word, yes she spent money, but buying the Dreamstation helped us to gather info we would have never gathered before, especially Flow Limitation, Low tidal volume (If I knew before I would have asked her to buy a simple Resmed Airset).
Thanks to that, I am helping her and we found the root cause of all her health issues she's had in the past 20 years. Now whatever happens, she will get a Resmed Aircuve, no matter what. And I know her health will get even better.

[FE350]

Thanks again T, Sleeprider, Dave,
So my question tonight, as I lay awake at 3am and my neuropathy is as troubling as ever, I’ve stopped using the machine. It’s a week now. I felt it was not helping, and my erratic results and difficulty with the constant forcing me to breathe, were torture. I’d assumed I could press to get the new machine ordered by my doc and be on my way to successful treatment in days. Wrong. I’ve seen a new doc, again, not experienced or knowledgeable of CSA. He’s committed to consulting a very experienced doc, who I cannot see directly, as he’s aging and is no longer seeing new patients. But here’s my question: With the delay to a proper diagnosis probably going to be weeks, not days, am I in danger of being regarded as “out of compliance” by my insurance carrier? Should I resume using the machine until I can get a confirmed diagnosis?

I understand there is a possibility I may have to go outside the insurance and purchase the machine outright. But of course I’d prefer to have this covered by insurance.

Thanks for your thoughts all!