Newcomer

[katny]

I am so glad I found this site. I am
female
54
laid-off
depending on cobra for health insurance
newly diagnosed with central apnea
and still waking up gasping for air despite my Respironics bipap avaps machine.

Before I found this site, I considered giving up my health insurance because of the cost. But now I have decided to keep Cobra (and my machine!) and fight on to find a solution for my apnea. I got my machine when I lived in Florida. Since moving to western New York I have not been able to find technical help with the bipap machine. So until finding this site, I was on my own dealing with the apnea. I am tired of being tired. I am tired of being scared to go to sleep at night. And I don't understand why I have central apnea given that it is relatively rare. Other than arthritis and depression, I have no health problems. The Florida doctor who diagnosed me casually mentioned doing an MRI to determine the cause but when I pushed him on this, he dismissd my request with a wave of his hand.

Anyway, due to finding this site, I am more hopeful now.

[rested gal]

Welcome to the message board, katny.

What is the full name of your machine, as written across the top of the machine? Please mention every word that's written on top, except what's written on the buttons.

[katny]

Well, the only words on the top of the machine are

BiPAP AVAPS

[RipVW]

Hello & Welcome, katny! Glad you found this forum--SO much useful info and SO many helpful people here!

Hang in there!

"You are getting sleepy . . ."

[rested gal]

Well, the only words on the top of the machine are

BiPAP AVAPS

Thanks, katny. Something you said earlier made me wonder if the machine was actually a BiPAP Auto SV instead of an AVAPS...

newly diagnosed with central apnea

Do you have copies of the reports (preferably pages with graphs and charts) from your sleep study that was done in Florida?

What I'm getting at is two things really --

1. Wondering if you really do have Central Sleep Apnea...or to put it another way...wondering if the sleep lab/sleep doc was correct in that diagnosis.

2. If so, then I'd have thought the most effective type of machine to prescribe for Central Sleep Apnea (or Complex Sleep Disordered Breathing if the centrals showed up during titration rather than during the diagnostic study) would be an adaptive servo ventilator (ResMed VPAP SV, or Respironics BiPAP Auto SV.)

I'm just puzzled about why they chose AVAPS instead of an SV machine, if they are going after centrals. But I'm not a doctor, and there may be a reason you were prescribed the AVAPS machine rather than an SV machine.

Is the AVAPS the first machine you've ever been given? Or did they put you on another type of machine after your sleep study, and then later decide to switch you to AVAPS?

Might be a good idea to get a second opinion about your sleep study data. If you have (or will get) the full (not just a one or two page doctor's summary) PSG reports of both your diagnostic AND titration from the sleep lab and post them here, there are several cpaptalk members whose input I'd seek -- the posters nicknamed StillAnotherGuest (SAG), -SWS, and ozij.

I don't mean to try to make you distrust what your doctors have said and how they have chosen to treat you. But... well, yeah, I guess I am doing that. Just seems an odd choice of machine for treating "Central Sleep Apnea", if that's the specific sleep breathing disorder you've got.

[ozij]

Rested Gal,
Why do you think the AVAPS is not good for Central Apnea?
O.

[rested gal]

I've been under the impression that adaptive servo ventilators are the machine of choice nowadays for treating sleep disordered breathing in which central apneas are a major component of the breathing problem.

On Respironics' site - http://avaps.respironics.com/Features.asp
The AVAPS machine is described this way:
___________________
Who potentially benefits from AVAPS™ technology?

* Restrictive patients benefit because AVAPS™ provides the comfort and leak compensation of a pressure mode and the safety of a guaranteed volume.

* Obese hypoventilation patients benefit because the algorithm compensates for changes in body position and maintains ventilation.

* COPD patients benefit because AVAPS™ achieves a combination of ventilation comfort and efficiency without compromise. The algorithm applies the right pressure at the right time.
___________________

Sounds like AVAPS is for people that have a problem getting sufficient volume of air into the lungs. People with central apneas have a respiratory timing problem rather than a volume problem, don't they? Of course, a person could have both problems going on.

Anyway, I'd think the Respironics marketing blurb would mention "Central Sleep Apnea" if AVAPS were intended to treat centrals.

On the other hand, Respironics does describe treatment of "central" apneas on their BiPAP Auto SV page:
http://bipapautosv.respironics.eu/

The BiPAP autoSV sleep therapy system is specifically designed to be the best choice for managing complicated sleep-disordered breathing patients. It combines a number of technologies to recognize and react to changing pressure needs, and it's clinically proven to treat obstructive, central and complex apneas and hypopneas, as well as periodic breathing.
________________________

As does ResMed on their VPAP Adapt SV page:

VPAP Adapt SV™ is an adaptive servo-ventilator designed specifically to treat central sleep apnea (CSA) in all its forms, including complex and mixed sleep apnea.

Unlike conventional sleep-disordered breathing (SDB) therapies such as continuous positive airway pressure (CPAP), adaptive servo-ventilation:

* treats complex sleep apnea syndrome and central sleep apnea
* normalizes breathing, completely suppressing CSA and/or Cheyne-Stokes respiration (CSR)
______________________________

But I'm sure no machine expert, so maybe the AVAPS can handle centrals as well as the SV machines are designed to do.

Or, perhaps katny's doctors have seen a volume problem that makes dealing with that (via AVAPS) more critical than dealing with centrals...if Central Sleep Apnea really was correctly diagnosed from the sleep study in the first place.

[ozij]

Thanks for collecting and presenting that info, RG, that helps a lot!
I agree with the way you analyse the blurbs.
The problem for me is, I still haven't gotten my mind around the difference between a volume problem and a timing problem... wait a minute: actually, thanks to your terminology I just have (and I think I know what confused me too....).

Here's what I got:
A person with central apnea may have the right volume in each breath they take, but since they take their breaths at the wrong time, they do have a timing problem. The reason for my confusion: I kept thinking that "when you don't breath there's no volume so why not volume assisted"? But once you look at "the volume when you breathe" that resolves the confusion.

The AVAPS does have timing settings, so I guess it would be OK for a person with timing problems (central apnea) but not for one who has obstructive problems on top of that.

Does that make sense?

I would imagine that with the machine set up with wrong timing parameters, a real mess can ensue - especially if the user has the capacity to attempt spontaneous breathing, and the machine overrides the user''s natural inclination with timed breaths.

katny were there any indications of obstructive apnea or hypopneas in your sleep study?

O.

[rested gal]

The AVAPS does have timing settings, so I guess it would be OK for a person with timing problems (central apnea)

I don't know. I've got a feeling that what matters about any machine that is supposed to use a timed backup rate, is... what triggers the backup "breaths."

I don't know about the AVAPS -- don't know if it would even be looking for the kind of things that indicate a central apnea is a'brewing, or handle them the way the SV machines are designed to do it.

But I still keep going back to "gotta know what needs treating." Central sleep apnea? Complex Sleep Disordered Breathing? Haul in an SV machine. Or maybe there's something else the doctor thinks needs treating with AVAPS.

Hope he didn't simply confuse "new" machines... thinking one with an A, a V, and an S in its name was another one of those spiffy AVS machines for treating centrals.

[ozij]

The AVAPS does have timing settings, so I guess it would be OK for a person with timing problems (central apnea)

I don't know. I've got a feeling that what matters about any machine that is supposed to use a timed backup rate, is... what triggers the backup "breaths."

The AVAPS does that: It has an S/T (Spontaneaous /Timed) mode:
http://avaps.respironics.com/features.a ... ]Suggested Protocol*

Set target tidal volume to 110% of displayed patient tidal volume in the S/T mode or 8 cc per kg of ideal body weight.

IPAP Max = 25-30 cm H20
IPAP Min = EPAP + 4 cm H2O

*Respironics does not provide medical advice. This protocol is a suggested protocol only and is not intended to replace or modify your institution's established protocols.[/quote]
It can be set up so that if a user doesn't breath within a certain time interval, the machine will initiate breathing.

O.

[katny]

wow... so much info.... thank you all. Here is some of what I know about my situation - in a timeline for clarity (hopefully!)

Florida
April 1st sleep study (which I have) - 14 ca's, 2 oa's

May 2nd sleep study - cpap machine used - 1 ca during rem sleep

June doctor prescribes cpap Respironics Remstar Plus series M

June technician delivers cpap machine to my house

June start using cpap machine, waking/gasping incidents continue, still sleepy during the day

July return to doctor, he dismisses my apnea incidents, tells me to keep using machine, finally he
relents and prescribes bipap machine

July technician (same one) delivers bipap avaps machine, during this visit she tells me that she is glad to see
me getting bipap machine, she goes on to say that cpap machines do not help central, finally, she tells me
that avaps machine is the only one that has a timed setting which, she emphasizes, is the setting I need

July ok, I am hopeful, start using bipap avaps, waking/gasping seems to have gone away but still very tired

August shove all earthly belongings (and 3 dogs) into car and drive to western NY to be near grown son and grandsons

New York:
Sept/Oct Out of work, overwhelmed, mask breaks, can't find anyplace to fix it, don't use machine, no waking/gasping

Nov Waking/gasping starts up again, figure I better get the machine working, find a "cpap express store", get mask
fixed, hopeful (once again!) but very upset when waking/gasping does not stop, furthermore, now using
the machine makes me feel like I am suffocating

present waking/gasping several times a night (with machine and without machine), tired and scared, plan to find
a doctor after the holidays, want correct machine, want to know what I have (central, obstructive, or both) and
WHY

I will study all the info posted re my situation. I have searched the internet looking for instructions
on how to reset the avaps machine - found nothing.

Thank you all for your support. The last few years have been
horrible. Marriage to evil con man (that alone is a story) which left me broke and shattered. Laid off from 9 year
job. Living on unemployment now and barely scraping by. But I am only 54. I won't give up. Eventually, I will find
a job. I want my life back.

p.s. duh... how do I post my sleep study?

[Julie]

Hi, what a lousy time you're having! Ok, I just read your story and my feeling is that you might have gotten the idea about having centrals from that lady who mentioned them (re the machine) but may only have talked about them, without meaning to necessarily imply that you were having them - after all your MD did not (as far as I can tell) and did not prescribe you a machine for them, which tells you that one of my fave things are technicians who talk too much! All that being said, you may also have had problems getting air as it's too common that whoever does set up your machine may not do it correctly in that if you have a prescribed setting of e.g. 10, but for an Apap (vs Cpap), they may just leave the 'default' machine settings of 4-20 as they are and figure the machine will get up to 10 when you need it (and higher if necessary), but in fact, it can take a while for that to happen, and if the machine's not set to e.g. 7-8 as a bottom figure, and maybe 12-15 for the top (which machine can still override) you'll starve for air at 4 until it moves up, but that's no help as by then you'll have the mask off gasping for air! So you need to check with your MD again about the settings, and get him to be sure the techs set you up properly, and not half-done. All this presupposes what I said above, of course, but it's not an uncommon thing to occur, certainly worth investigating (as are the "centrals" you may never have had to begin with).

[katny]

I would love to find out I do not have central apnea. My first sleep study - no mask - indicated 14 ca's and 2 oa's. I put more stock in that report than in what the technician said. So all along I figured I do have central. Should I question the detailed print out from the sleep study, the one that has the 14 and the 2 in the columns for ca and oa? Is it possible the study was not well conducted? I trusted the report. But now I am wondering if the report is trustworthy.

At the very least, I am thinking now that I need to have another sleep study. I realize that the "gasping/waking" incidents occur when the most severe apneas happen. Even on nights when they don't occur, I am probably waking up several times not breathing. I just don't remember those less severe incidents.

Having said that, back to this central issue again. The fact that I only seem to have the gasping/waking incidents during periods of my life when I am considerably overweight, seems to tell me that I may have obstructive after all. On the other hand, all my life (even when very thin) I have been exhausted and have experienced episodes of falling asleep while driving.

So bottom line. Looks to me like I need another sleep study. Meanwhile, I will study all the info written in these posts and look into changing my pressure (if I can find out how to change the settings on the bipap avaps machine).

[Julie]

A lot of us have some centrals on testing, but they generally tend to be irrelevant in the long run (our apneas are usually way up there and once treated, centrals just seem to not be factors any more). I would definitely get rechecked if I were you and not just go along wondering about it.