learning the hard way...a rant

Sleeprider wrote:
"The irony in your case is that the "professionals" are dealing with incomplete information. They diagnosed you with obstructive sleep apnea and in an unusual move, prescribed a PRS1 Auto CPAP for you to self titrate. Who would suspect you would be the (not so) rare individual that develops severe complex apnea when exposed to CPAP pressure. So after failing the first attempt, you now have been provided another state-of-the-art APAP Airsense 10 Autoset...again without titration study. Perhaps if we do the same thing twice it is reasonable to expect a different outcome?

So here you are with very good, but very wrong equipment, and the machine data is the problem? It boggles the mind, the incredible conceit that comes from knowing better than the patient what is wrong, without investigating the problem, and yet disregarding the only data that is available. That is the definition of a dangerous medical community. "

you folks keep me sane... well mostly...lol

I was in seeing my GP yesterday, she was appalled that the "new" sleep doc had ordered me back on CPAP...with a titration study maybe more than 4 months away..Anyway we have requested a titration study at the clinic I had my original sleep study at, she put in the data from my last few nights and here's hoping...

She also is willing to write prescriptions for xPAP when I need it, I just have to train her....

Stephen

borgready wrote:The insurance company will hold the data the manchine gets against you when it comes to paying for the machine.

Explaining and teaching the patient eats into their profits and the insurance doesn't compensate for patient education.

And the data will show the doctor and DME inflicted complex apnea on this patient to his detriment. Good luck with that.

You give the DME and doctor far too much credit. In this case they do not care about the data and don't believe it has any value. They seem to have no concept of complex apnea or they would have had a clue by now, the second attempt on APAP, and respected the patient enough to consider his concerns and machine data. They are so caught up the fear that a layman can question their expertise they are blinded to the possibilities. Pretty amazing story. We should only wish it would be peer reviewed.

Providers should be penalized for disseminating MISinformation!

One of the reasons I am thinking if DIYing (as a newbie) is I don't want to deal with DMEs and compliances and putting more on my plate regarding Drs Appts etc.

But now I'm wondering...could I GIVE myself complex apnea if I don't know how to titrate myself properly? If I can't sense what's actually good for me?

I am considering the Airsense 10 Autoset For Her - and don't want to worsen my symptoms.

Hopefullady wrote:But now I'm wondering...could I GIVE myself complex apnea if I don't know how to titrate myself properly? If I can't sense what's actually good for me?

technically, you can't *give* yourself complex apnea. it's a 'you've got it,or you don't got it' thing.

if you don't have it, then the pressures of cpap won't cause you to start having centrals.

if you DO have it, then the pressures of cpap can cause you to have centrals that tend to get worse as pressure increases.

that's why *all* of the modern (last 4-5 years or so) auto machines differentiate between central and obstructive apneas, and won't raise the pressure because of centrals.

palerider wrote:

Hopefullady wrote:But now I'm wondering...could I GIVE myself complex apnea if I don't know how to titrate myself properly? If I can't sense what's actually good for me?

technically, you can't *give* yourself complex apnea. it's a 'you've got it,or you don't got it' thing.

if you don't have it, then the pressures of cpap won't cause you to start having centrals.

if you DO have it, then the pressures of cpap can cause you to have centrals that tend to get worse as pressure increases.

that's why *all* of the modern (last 4-5 years or so) auto machines differentiate between central and obstructive apneas, and won't raise the pressure because of centrals.

I think I get it. I have only obstructive, I think. This would determine what machine I get.
Are the machines for OSA only "milder"?
If one has centrals and the pressure is too high, is the potential for increase in centrals only "while it's happening during that moment" - or permanent?

Hopefullady wrote:I think I get it. I have only obstructive, I think. This would determine what machine I get.
Are the machines for OSA only "milder"?
If one has centrals and the pressure is too high, is the potential for increase in centrals only "while it's happening during that moment" - or permanent?

well... I don't know what you mean by 'milder'. they're certainly less complicated, programming wise. and sometimes as far as the number of parameters that can be/need to be set. ranging all the way down to one... the set pressure. they also top out at lower pressures, a plain cpap/apap maxes out typically at 20cm, a bi-level at 25, and a non-invasive ventilator at 30cm/h2o.

Central Sleep Apnea can get complicated, and can be complicated to treat. some can be pressure related, some not.

COMPlex Sleep Apnea is where increasing pressure tends to cause emergent central apnea, and higher pressures tend to cause more centrals, I believe that it's thought to affect around 1 in 7 people with obstructive sleep apnea.

regular Obstructive Sleep Apnea doesn't have a central component, I sometimes have pressures in the lower 20's on inhale, and have virtually no centrals.