Losing hope feeling worse on CPAP than without. Any advice?

[AFAFAF]

Your CA was recorded at twice the rate as OA in your diagnostic study, and with the huge number of hypopnea, it is safe to assume the majority of that is central.  We can discuss how and why central apnea occur, but the important part of this is that CPAP cannot treat CA and central hypopnea, however, with ASV, you will achieve an AHI less than 1/hour. The next step as you note is a pointed discussion with your doctor.  You are now armed with the knowledge that your problem, based on your diagnostic study, and confirmed by your trial on CPAP, is predominately central apnea. In fact with CPAP, any obstructive component is treated and near zero events.  As you know, the residual CA leaves you fatigued, frustrated and dysfunctional and is a high priority to resolve.

To better prepare you for a discussion with your doctor, I am going to link the Resmed Clinical Titration Guide.  This is the decision-tree for problems in therapy and offers an excellent discussion of the alternative therapies.  You should read the sections on CPAP and ASV. Also look at ST and note that ST is NOT appropriate for central and complex apnea. https://document.resmed.com/en-us/docume...er_eng.pdf  The more you know, the faster and better you will be able to get things pointed in the right direction.  While your results with CPAP are unacceptable, it is better than the 30 events per hour you had in the diagnostic test. I encourage you to stick with it as best you can, but you do need to move to ASV therapy to get back to experiencing normal good health.

Ok thanks for this. I hope the dr will understand my situation since he didn't mention ASV as a potential therapy. I'll read up on it and try my best. Also not too sure why my report indicated Obstructive Apnea, rather than complex. Any ideas why?

[AFAFAF]

I hope the Avoidance plan works, but with Centrals at nearly twice Obstructive, it seems that you're headed to ASV at some time. Keep us updated on how the edits are working.

What does avoidance plan mean? Also still not feeling the best. Here's some updated results, although have major leaking for some reason. Anyone know why I would feel worse on the machine than off? Since I'm reducing my AHI, but feel more tired/sleepy on the machine for some reason.

[Sleeprider]

Why obstructive diagnosis? This is extremely common. While some doctors are oblivious to the 15% of patients that actually experience CA, most just don't want to fight the system in the U.S. which requires all patients diagnosed with sleep apnea of any kind to start therapy on a CPAP. Some central and complex apnea patients do achieve improvement on CPAP and you are one of them, however many of those eventually quit CPAP when it fails to deliver the relief and feeling of well-being they expected when dealing with all the other downsides of this therapy. Only when CPAP fails to demonstrate efficacy in spite of compliance, will insurance consider reimbursement for advanced bilevel therapies. This is really a case of the tail wagging the dog because it is insurance and Medicare that stipulates the course of therapy, overriding any diagnosis or recommendation by doctors. Your efficacy is actually borderline under 5 AHI and may be considered adequate unless you have an exceptionally concerned doctor, or you make a lot of self-advocacy noise. The problem is you are feeling the effect of your untreated CA, and given your diagnostic test, it is not a therapy onset problem.

Be sure to obtain and keep copies of your detailed results, not just summary. It is not unusual to have to shop doctors that are willing to treat central apnea. It's just too easy for a doctor to ignore more complex cases when they provide easy repetitive income, as compared to actually having to work on a "difficult" complex patient. You would be surprised how many specialists have no acquaintance or knowledge of ASV.

With your permission I will modify the title of this thread to indicate complex apnea in AU. This should bring in some of our other Australian members with experience obtaining ASV in AU, or your could start a new thread with that topic, and just link back to this thread. Many members in AU will obtain an ASV through a private purchase from a supplier in the U.S. do to significantly higher costs in your country and limited reimbursement for advanced machines. We have a wiki which may need updated, concerning CPAP prescriptions in AU that you may want to comment on http://www.apneaboard.com/wiki/index.php...escription

[SarcasticDave94]

The Avoidance plan? This means modifying your CPAP settings to avoid CA, or to not add extra Centrals. It really cannot treat CA, as it doesn't have the required respiratory backup rate to force breaths when a CA happens. That is what an ASV does have however, and that's why ASV is the only true choice for CA combat.

Why you might feel worse on CPAP? It's not treating CA, and can be adding more CA to your sleep issue. Since you're not treating Centrals, you still feel the negative effects at the least, and if it adds more CA, you feel even worse. This would be a case of the therapy being worse than the illness thing.

Please be aware, do not attempt a BPAP without respiratory backup rate. It'll very likely drive your CA sky high.

ASV will kill all the CA and everything else too. I've used it myself a few years and it will really treat you very well.

[quiescence at last]

just putting in 2 cents...

I think most people would feel rotten after even one of those 3 nights of sleepy-ish-non-sleep-horror (flow restrictions in abundance, leaks all the time, and bad leaks to boot). Who knows if, given actual sleep time, you would be awakened or aroused by respiratory effort (called a RERA).

A lot of things can aid in Dave's avoidance plan, to reduce misery while you await appointments.

Good luck,

QAL

It it were my data, I would be changing my settings to min 8, and max 11.5, with EPR at 1. And, I would ramp for 5 minutes from 6.  Goal is to reduce variation throughout the night, decreasing the machine caused disruptions.  Obviously, I would want to try pads between my face and the mask, and would try to position my head with proper pillow height and supports for my neck.

anyway, maybe given you do not want to change settings yourself and may have trouble convincing the nurse, you could call them and say the PAP therapy makes you feel worse, and it is failing, and you need help, NOW.

[AFAFAF]

The Avoidance plan? This means modifying your CPAP settings to avoid CA, or to not add extra Centrals. It really cannot treat CA, as it doesn't have the required respiratory backup rate to force breaths when a CA happens. That is what an ASV does have however, and that's why ASV is the only true choice for CA combat.

Why you might feel worse on CPAP? It's not treating CA, and can be adding more CA to your sleep issue. Since you're not treating Centrals, you still feel the negative effects at the least, and if it adds more CA, you feel even worse. This would be a case of the therapy being worse than the illness thing.

Please be aware, do not attempt a BPAP without respiratory backup rate. It'll very likely drive your CA sky high.

ASV will kill all the CA and everything else too. I've used it myself a few years and it will really treat you very well.

I'll try my best to get on ASV and see what happens. What does it mean about BPAP without respiratory backup rate? I don't want things to be worse.

[AFAFAF]

Why obstructive diagnosis?  This is extremely common.  While some doctors are oblivious to the 15% of patients that actually experience CA, most just don't want to fight the system in the U.S. which requires all patients diagnosed with sleep apnea of any kind to start therapy on a CPAP.  Some central and complex apnea patients do achieve improvement on CPAP and you are one of them, however many of those eventually quit CPAP when it fails to deliver the relief and feeling of well-being they expected when dealing with all the other downsides of this therapy.  Only when CPAP fails to demonstrate efficacy in spite of compliance, will insurance consider reimbursement for advanced bilevel therapies.  This is really a case of the tail wagging the dog because it is insurance and Medicare that stipulates the course of therapy, overriding any diagnosis or recommendation by doctors.  Your efficacy is actually borderline under 5 AHI and may be considered adequate unless you have an exceptionally concerned doctor, or you make a lot of self-advocacy noise.  The problem is you are feeling the effect of your untreated CA, and given your diagnostic test, it is not a therapy onset problem.  

Be sure to obtain and keep copies of your detailed results, not just summary.  It is not unusual to have to shop doctors that are willing to treat central apnea.  It's just too easy for a doctor to ignore more complex cases when they provide easy repetitive income, as compared to actually having to work on a "difficult" complex patient.  You would be surprised how many specialists have no acquaintance or knowledge of ASV.

With your permission I will modify the title of this thread to indicate complex apnea in AU.  This should bring in some of our other Australian members with experience obtaining ASV in AU, or your could start a new thread with that topic, and just link back to this thread.  Many members in AU will obtain an ASV through a private purchase from a supplier in the U.S. do to significantly higher costs in your country and limited reimbursement for advanced machines.  We have a wiki which may need updated, concerning CPAP prescriptions in AU that you may want to comment on http://www.apneaboard.com/wiki/index.php...escription

Yes you can modify the title. I'm just worried the dr won't want to prescribe an ASV as the recent sleep data don't really say I have too many centrals. But what if they say I don't need the machine? Although I guess the sleep study seems like better evidence to show that maybe I could benefit from ASV.

I guess from the numbers it does seem to have greatly reduced my AHI from 30 but I still feel rubbish. I just really hope I can find a way to feel better on a machine than off.

[AFAFAF]

just putting in 2 cents...

I think most people would feel rotten after even one of those 3 nights of sleepy-ish-non-sleep-horror (flow restrictions in abundance, leaks all the time, and bad leaks to boot). Who knows if, given actual sleep time, you would be awakened or aroused by respiratory effort (called a RERA).

A lot of things can aid in Dave's avoidance plan, to reduce misery while you await appointments.

Good luck,

QAL

It it were my data, I would be changing my settings to min 8, and max 11.5, with EPR at 1. And, I would ramp for 5 minutes from 6.  Goal is to reduce variation throughout the night, decreasing the machine caused disruptions.  Obviously, I would want to try pads between my face and the mask, and would try to position my head with proper pillow height and supports for my neck.

anyway, maybe given you do not want to change settings yourself and may have trouble convincing the nurse, you could call them and say the PAP therapy makes you feel worse, and it is failing, and you need help, NOW.

What does flow restrictions indicate and mean? Sorry I am a newbie.

Could you give me reasons for each change? I feel like there's a lot and I hesitate to many changes when I don't understand why. I think I just need some more information so I can convince my nurse on what changes might be good to make. I'm not sure what "reduce variation" means, and also I feel like I sleep through the night, so not sure what you mean by disruptions. Perhaps you refer to disruptions I may be unconscious of?  

I feel I position on head exactly on my pillow and sleep on my back I really don't understand the massive leakages.

I will tell her I need help now. She just said it takes time sometimes for it to work and it is not magic. Just feel somewhat hopeless. ;;

[AFAFAF]

Here are my latest graphs. Not sure why the drastic leakages are happening. I just sleep on my back and try not to move. Maybe I'll loosen the mask to see if leaks reduce. What is Cheyne Stokes Respiration? Should I be concerned?

[SarcasticDave94]

Your charts still prove that you're not treated, as we knew it would not be able to due to the CA. CSR flags are in this case translated to variable breathing and should not concern you.

The leaks aren't helping, be certain not to overtighten straps. If your response to leaks is tighten till it hurts, then you need a different size cushion or a different mask altogether. Mask choice is the hardest part of Apnea therapy.

As for what I meant about BPAP without a backup rate, this is a regular BPAP like VAuto.

If the doc tries to say you don't need ASV to treat the CA, you should have a copy of the ResMed Titration about ASV and a ResMed page describing what the different machines prescribed treatments are. And you should explain your ongoing sleep apnea symptoms and complaints. It's a great idea to write down what these symptoms and complaints are so you can discuss them with the doc later. This means all the negatives about your therapy, CA flags, unrest, fatigue, and so on. And if the doc still doesn't get it, then get another doctor that does understand how to treat Central Apnea.

I'll see if I can find my ResMed Titration info and post it later today.