Non Vented Mask - Periodic Breathing Disorder - Anyone Else?

[phorts]

I'm baaaaack! After a revitilizing 5 hours of sleep (due to an "incident" in the sleep clinic involving a patient, security and the police, they didnt set me up till 11:30) they woke me up at 6am and gave me the usual barrage of paperwork and stupid questions like "compared to your sleep at home, would you say this was better, same or worse?"... Lol.

So yeah, they fiddled with the machines/setup throughout the night, it seemed like every 30min-1hour they were in doing something.

At one point they switched the machine from the BiPAP AutoSV to the ResMed Adapt SV. I definitely see what you're saying about it being hard to get used to. It felt like it was sucking the air out of me, albeit slowly and gently. I can see myself getting used to something like that, however, my concern with it (and my concern with any unnaturaly Rx) is that i'm afraid my body will not work properly on it's own w/o it and will caus esome weird long term side effects ...i dunno. Obviously my body has got issues already so better to have something that helps.

So, I just hope they got enough data to analyze and that they were able to stabalize my breathing before the end of the study. I dont understand why it takes them "3-5 weeks" to get the results back from Complex Study, as it was a real time study, not a true diagnostic. So the "counts" arent as important. If the therapy worked (which they should know if it did or not because the Dr was connected remotely controlling the study) then why not tell me in the AM... oh well, i guess it's helpful for them to get the actual raw data, score, and report in front of them before coming up w/ a game plan.


the tech told me (and later my research has confirmed) that Dr Robert Thomas (not my dr but my dr works with him) is a pioneer in the field of complex sleep apnea and has written and co-written several papers on the subject:

http://sleep.med.harvard.edu/people/fac ... +Thomas+MD


He's said that this lab is one of the most aggressive labs in the country and is where alot of the most severe and complex SDB patients come for treatment. I guess alot of Dr's don't want to mess around with this type of CSA treatment because it's dealing with Co2.... i'm sure politics and other factors like malpractice fears come into play as well, but it's good to see that this lab and these docs are taking the initiative to be on the forefront of this disorder. I guess i'm in good hands. ALthough i wish Dr thomas would read my studies and not the assistant to my dr..lol


Well, i guess now we wait. In the meantime,

Muffy. What did you pay for your Adapt SV? I might ujust try to buy this one in anticipation that this is the machine i'll need for my therapy. I certainly am NOT oging to pay 6G's for it. And if i get it for under $500, then i'm reasonably sure i can sell it for at least what i will pay.

So, yeah...

thanks again all for your help and support...i'll keep you posted on the progress and my results.

Thanks!


PS- i brought my dental deviece but they didnt want me to use it for this study.... makes sense i guess, but i'm curious as to if it would help or not, gues i'll have to find that outmy own..peace!

[Muffy]

Muffy. What did you pay for your Adapt SV?

Hmmmm...

Y'know, I don't really know. I think I rent.

Muffy

[JohnBFisher]

... At one point they switched the machine from the BiPAP AutoSV to the ResMed Adapt SV. I definitely see what you're saying about it being hard to get used to. It felt like it was sucking the air out of me, albeit slowly and gently. I can see myself getting used to something like that, however, my concern with it (and my concern with any unnaturaly Rx) is that i'm afraid my body will not work properly on it's own w/o it and will cause some weird long term side effects ...i dunno. Obviously my body has got issues already so better to have something that helps. ...

Yup. They are different. I personally prefer the ResMed's VPAP Adapt SV unit over the Respironics BiPAP AutoSV unit. But that's me.

Yes, you do get used to using xPAP therapy and feel as if you need it thereafter. If you have CSA, then guess what? You already need it. Sure your body adjusts to using it. But it's in a good way. Even if I only sleep four or five hours with it. It is MUCH, MUCH more effective than a 10 hours without it.

The one weird long term effect I hope to gain is to keep on keeping on. I was doing very, very badly without it. I had worsening problems with bad hypertension, continued problems with diabetes, continued problems with LDL cholesterol and trigylcerides. I was a walking time bomb. I'm not out of the woods yet, but the numbers are starting to come down. Now that I'm back to walking daily so is my blood glucose control and all the other numbers.

... the tech told me (and later my research has confirmed) that Dr Robert Thomas (not my dr but my dr works with him) is a pioneer in the field of complex sleep apnea and has written and co-written several papers on the subject ...

Glad you got a doctor capable of seeing through the unusual situation and then can help you find a solution that will work for you.

... Muffy. What did you pay for your Adapt SV? I might just try to buy this one in anticipation that this is the machine i'll need for my therapy. I certainly am NOT oging to pay 6G's for it. And if i get it for under $500, then i'm reasonably sure i can sell it for at least what i will pay. ...

From what I've seen most insurance companies use a rent to own approach and between 4 and 6 thousand appears to be a fairly normal price. So, yes, the CPAPauction site offers a good alternative.

[dsm]

Keith,

Sounds like you had the usual fun, that getting it all done so late doesn't help - good thing the SWAT squad didn't raid the place that would have added a lot of fun (and stress). These sleep-ins are inherently stressful enough as they are.

Good luck

DSM

[phorts]

DSM, sent you a pvt msg about the auction on that Adapt SV. Just wanted to know if that was you bidding on it and wanted to know if you were really goin after it. It looks like you bid it up from $100 - $175...

Just askin cuz i know you have both and wanted to know if you were really after this one.

Thanks!

[dsm]

DSM, sent you a pvt msg about the auction on that Adapt SV. Just wanted to know if that was you bidding on it and wanted to know if you were really goin after it. It looks like you bid it up from $100 - $175...

Just askin cuz i know you have both and wanted to know if you were really after this one.

Thanks!

PM reply sent

Cheers DSM

[dsm]

Keith

Bad luck for both of us - seems someone else had a greater need & good luck to them. It was a bargain.
It was the current model & they really got it for about 1/4 of what a new one might sell for.

I was interested because it is the 'enhanced' model - mine is the original. I kind of doubt that there
is that big a difference (other than AHI data & 25 CMs max pressure). But, I would have paid what I
bid to get the 'enhanced' model.

Now I just have to wait for an 'advanced' Bipap Auto SV & that may take a year or so for them to start showing up
this way.

Believe me, there will always be more. Last year two Bipap Auo SVs went for stupidly low prices. I had no need to
bid so didn't.

Good luck & believe me (i'm an in-gin-ear ) they will come up again.

Doug M

[Muffy]

...my insurance will only cover $750/year AFTER my $1000 deductible…

Whoa! And that AdaptSV went for only $757.50!

I wonder if the patient knows that his kid just sold his machine...

Muffy

[dsm]

...my insurance will only cover $750/year AFTER my $1000 deductible…

Whoa! And that AdaptSV went for only $757.50!

I wonder if the patient knows that his kid just sold his machine...

Muffy

Keith discovered too late that he needed a prescription to bid, else I am sure he would have been the winning bidder.

DSM

[ozij]

Phorts, good luck on your sleep study tonight. I hope that it will shed some new light on your situation.

DSM, now I know why we seem so much alike. We are both engineers!

I, too very much want to try an ASV, probably the Respironics first. My therapy varies over such a wide range despite attention to mask leaks, etc. that I think my current machine isn't 'smart' enough to adjust to what is going on.

I've been saying that about your current machine for a long time, timbalionguy. I wouldn't come to any conclusions about my state or therapy needs based on that one.

O.

[timbalionguy]

DSM, now I know why we seem so much alike. We are both engineers!

Re engineering - I have done a wide variety of different engineering from early days doing toolmaking (lathes, milling, drilling, boring & shaping) to electronics & have been at different times a transmitter (high power) technitian, a receiving station technitian then a microwave link technitian then a radar engineer. Later became a mainframe computer engineer (IBM) then a software engineer(IBM), later a systems engineer(IBM) then a software researcher - today am an IT architect.

What line were you into ?

DSM

DSM,
Thank you for the background info. Sorry I didn't respond to your question right away. Life sometimes grabs you and drags you along
My engineering background is in the broadcasting related fields. So like you, that includes high power RF (a discipline that is becoming uncommon these days), video, audio, videotape, and any kind of electronic system that interconnects there. I am completely comfortable with either analog or digital technology, but generally find analog more interesting. In recent years, just like every other technologist, I find myself dealing with IT systems at just about every level. When I started in this business in the mid '80's, most stations still had small mainframe computer systems (like the IBM system 36). Nowadays, there is more power in some microcontrollers than there is in those old system 36's! I also enjoy working with older 'antique' videotape equipment, much of which is heavily dependent on pneumatic systems of both high and low pressure. So like you, I don't find any mind-bending technology in an xPAP machine. Its just too bad the 'interesting' machines cost so much!

[dsm]

timbalionguy

I think an enormous number of engineers who started out in analogue technology have moved into digital (I was trained on valve technology & at the same time was introduced to a future technology called transistors ) That seems so funny to say but was how it was !.

The transmitters were 'big' 26 Kilowatt devices in cabinets approx 3ft wide & 6ft tall & with power valves that measured in feet & inches. Resetting the antenna grid (txmttr to antenna linking) on them was a serious business.

One day (in 1964) while working on the power supply of one of these AT26 military transmitters (it was switched to 'star' power phase which is a lower current startup setting) a worker hit the on button before we were ready & I was blasted (somersaulted) 15 feet across the transmitter hall floor. The person I was working with froze but ended up with a hole in his knee where my elbow was resting (it too ended up with a burn hole) - Thank the lord it was DC current we were working on & not the AC at the antenna end. Radar could be fun too - there was a constant joke around that radar workers would become sterile but funnily, we had the largest families of those we worked among.

Re video & audio - another great area to work in and very satisfying because it was always easy to see the results of any effort.

Am sure we could have a ton of fun talking war stories over a beer

DSM

[phorts]

Annnnnnnd the results are in!

So, just to illustrate how lucky (or amazingly important) i feel right now, i was able to get a doc appt, get a sleep study, get the results and get back to the dr to review them in UNDER 2 weeks. That's something that could have (and usually has) taken MONTHS to cycle. But, like i said...i guess i was lucky.

So, as you may or may not have read, i was diagnosed with periodic breathing disorder with mixed apneas (central and obstructive) to which they wanted to set me up on a split night trial trial of CPAP w/ a Non-Vented mask and an Adapt SV w/ a non-vented mask to see if either were able to stabilize my breathing and reduce arousals.

So, the study showed that there was little improvement on straight CPAP (pressure of 14) with a non-vented mask. INteresting, as it was the theory of the doc that the rebreathing of some Co2 would have regulated my breathing patters at least a LITTLE, and it did, but the amount was not appreciable.

The second part of the night revealed an appreciable reduction in AHI (from 14 from the diagnostic study w/o CPAP and just the dental device) to 3.5. (RDI 22).

Now, the reports suggests this was a significant difference and therefore it is recommended to attempt therapy with these settings (Adapt SV with EEP of 6 and max pressure of 11), continue to use the dental device and encouragement lateral sleep position.

However, i didnt read the report until AFTER i left the dr's office. Prior to that, i had just listened to him talk to me about keeping my expecations relatively low given my history of limited success and the fact that my sleep fragmentation was not eliminated completely.

I'm torn on whether to feel hopeful about the trial with the Adapt SV and disappointment for the seemingly inconclusive evidence (at least from the doctors perception).

However, i'm leaning toward the hopefl side,mostly because all i have left is hope as i feel like i've reached the point where, if this doesnt work, i'm not sure where to go from here (perhaps subject myself to clinical trials for months on end and act as some theorizing doctors lab rat, or get into sleep medicine myself and devote my life to the understanding and treatment of my, and hopefully many others, struggles with fatigue.

For now, i hope.


As i await the call from my local equipment providor for my mask fitting, i have a few questions i want to ask anyone that has had experience withthe ADapt SV (or really any CPAP treatment).

1. Given the Adapt SV's absolute requirement for the tightest seal possible for effective treatment (and especially when the rebreathing of Co2 as a therapeudic effort, which mask would you recommend? I tried the Hybrid mask as i had used it before and had some success, but when i put it on to start the complex study, i got a familiar rush of anxiety and frustation that i could get the nasal pillows to fit properly. I remember having to deal with this on a nightly bases during my previous attempt with an APAP. They then switched me to the Ultra Mirage FF Mask, which seemed to fit pretty well and had very little, if any, issue with leaking. I was successful in retiring my self consciousness for the good of the study, but i'm not thrilled about the idea for long term in-home treatment. I guess i'm accepting the fact that A. because i'm a mouth breather and B. because the FF mask seemed to seal well and C. Because that's the best way to get the best treatment that a FF Mask is the right way to go. So, again, what would be the best FF mask for me to start with? I'm one to always want the best technology and quality out there and i remember the Ultra Mirage FF being pretty old. Were there some advancements in this mask?

2. During my upcoming trial with the Adapt SV, what will i need in order to read the data from the machine to analyze my own results? Software? Special tools or cables to connect?

3. My insurance covers $750/year for DME, so rather than me trying to bid on one online, or Purchase one outright, they ordered one for a 1-2 month trial (where my insurance company will pay for the rental fee, deducting from my allotted DME amount) to see if this will work. Hopefully it does, and i'll sell my soul for one at this point..so...yeah. If/when this looks like this treatment will be beneficial, i'll look into seeing what, if anything, else my ins co. can do to provide further coverage on this. Any advice on this would be grateful.



Sorry again for the long post. I've been reading a book by a rather descriptive author (Dan Brown - ANgels and Demons) so it must've rubbed off..


As always, thanks for being my sounding board and offering a place to document and vent out my story. And of course, thank you kindly for any and all help and insight offered.

To a better nights sleep, and more importantly, to getting back to life.

[ozij]

1. Given the Adapt SV's absolute requirement for the tightest seal possible for effective treatment

Uh, I thinkg the operative word here should be best seal. Best and tightest are no necessarily the same.

They then switched me to the Ultra Mirage FF Mask, which seemed to fit pretty well and had very little, if any, issue with leaking. <snip> I guess i'm accepting the fact that A. because i'm a mouth breather and B. because the FF mask seemed to seal well and C. Because that's the best way to get the best treatment that a FF Mask is the right way to go. So, again, what would be the best FF mask for me to start with? I'm one to always want the best technology and quality out there and i remember the Ultra Mirage FF being pretty old. Were there some advancements in this mask?

The best technology is only there to solve seal and comfort. They both depend on your face and on who you are. You seem to be getting both form the Ultar Mirage FF Mask, so I'd say you've found your best mask. Are there newer masks around? Yes. Will they be better for you? Maybe yes, maybe no, and you really won't know till you've tried. If it were me I would concentrated on getting my brain and body used to sleepin with the ASV -- I would wait with further mask trials till my therapy stabilized.

To a better nights sleep, and more importantly, to getting back to life.

Amen to that, Phorts. Good luck.

[Muse-Inc]

...Sorry again for the long post. I've been reading a book by a rather descriptive author (Dan Brown - ANgels and Demons) so it must've rubbed off...

Personally I think that's the best of Brown's novels . No apologies needed, I find your story fascinating...I'm sure there are other who think so too! Please keep us posted, that way we all learn. Sounds like you've got a good team!

Might try Rooster's fixes or one of the others that several of us wearing the Hybrid use to stablize the pillows...that is, if you want to try it again:
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