Now.. Diagnosed with Central..

[traveling Utz]

Well.. I apologize for the length of this..

The advice here has been awesome..

I have been on the roller coaster ride.. From the initial diagnosis to fighting with my CPAP. I never gave up.. I kept trying..

I fought with my DME to get different masks.. I bought my own, trying to find something that worked.. Pad-a-Cheek liners..

I was SOOO grateful for the info, to make sure I got a data capable machine, so I could see my data..

After repeated calls to my Dr.. and basically telling him, I needed some help to work through this..

His answer was send me for another Sleep Study.. That didn't work..

I took it upon myself.. I got the prescription for Ambien CR , so that I could sleep during the night..

Guess what I found? I was having "Clear Airway" events.. Some nights as many as 145.. a look back at my initial diagnosis.. Showed that I had 225 Central events..

I researched and found a Neurologist that was associated with the sleep clinic, that had a specialty in Sleep Med..

I called and made an appointment and called my primary care Dr, and told them I needed a referral. The receptionist, asked.. Did the Dr. tell you to see the Neurologist? No, he didn't, but I need to find out what will make this work.. She gave me the referral..

Last Thursday, I went to see the Sleep Doctor.. I was prepared.. I had my printouts from sleepyhead.. And can I say.. It was a breath of fresh air.. The Dr was surprised that I was so informed.. She asked me, where did you learn to get the info, the software etc.. I told her exactly where.. and how..

She looked at the data, she looked at my last sleep study, and told me that I have Centrals and that the CPAP is not going to be the right solution. That the centrals were causing the issues for me and the reason why I wasn't able to "adjust" to the CPAP. Not only did she look at my last study, but took me to her office to review it and show me exactly what was going on. I was having centrals and the system was not marking them. She wanted to go to the hospital and research my initial sleep study to see it for herself, and not just the written report. She also ensured that she reviewed my stress test from last year and I am now set up for a MRI.. And another Sleep Study for ASV. As for now, I am going to continue with the Ambien CR, just till we can get me used to the new machine. I want off of it, but need to get sleep as well.

I discussed with her using a different sleep lab, but she assured me that she would be the one reviewing the sleep study, and I felt very relieved that she knows what she is doing.

So.. I got the confirmation that I wasn't crazy, that this is just the next step.. I am prepared to work through this.

I am also switching my DME, as I did not feel as though my current one was very helpful along with shipping the wrong hoses. They also would not return my calls.

Why type all of this? Because someone else might need the encouragement.. To know that there are people that struggle, but be your own advocate and be determined..

I do have some questions for when the time comes..

1- Are there different models of ASV? I mean, I have a RESMED S9 Elite, because I wanted access to my data.. Are there the same kinds of issues with ASV machines? Data and Non Data?

2- I don't know if this is an easy one.. How is breathing with a ASV different than the CPAP?

Thank you so much..

Tim

[NateS]

Utz,

Good work! You are on the right track!

I hated CPAP in my second sleep study. I was miserable all the next day with terrible headaches from the central apneas it caused.

When I got my ASV described below in my profile, I had to get used to breathing with a machine all night of course, and no one likes going from no machine to wearing a mask and breathing through it, but from that point on, I loved it and still do. I did find that I had to raise my minimum pressure a bit to avoid feeling like suffocating at the beginning of the night, but the instructions for that will depend on whether you get the ResMed or the Phillips Respironics. Start out with the physician's prescribed settings and give them a real chance to work.

Recently, I accidentally set my machine back to CPAP for one night, and I hated it and got terrible readouts!

So I would be optimistic that you are going to adapt to ASV and really appreciate the difference. I find that my machine is so relaxing that it actually facilitates my falling asleep.

Good luck!

Nate

[traveling Utz]

Thank you Nate.

I am continuing with the CPAP cause I know if I go away from it, it will be tougher to go back..

[Todzo]

Hi Utz!

When I have problems with the breathing stability that leads to hypocapnic central apneas I use EERS[1]. I would love to know if your doctor is familiar with and knows the current state of development of Dynamic CO2 therapy.

Thanks!

Todzo

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[Grand-PAP]

Hi Tim,

Welcome to ASV therapy. I also started on a S9 Elite. Not nearly to the extent you did, but I also had CAs and difficulty getting my doc to address my problem. Finally, I was able to get the ASV study and the ASV machine. It made a world of difference. For over a year I have been on ASV and it has virtually eliminated both OAs and CAs.

To directly respond to your questions . . .

1- Are there different models of ASV? I mean, I have a RESMED S9 Elite, because I wanted access to my data.. Are there the same kinds of issues with ASV machines? Data and Non Data?

I would be EXTREMELY surprised if ANY manufacturer's NEW ASV machine was NOT data capable. Two of the most popular current model machines are: ResMed S9 VPAP Adapt and PR System One BiPAP autoSV - both of them are data capable. The prior PR ASV is also data capable. With ResMed's prior Adapt machine, they made two models. The "Enhanced" is data capable, but the "non-Enhanced" is NOT data capable.

2- I don't know if this is an easy one.. How is breathing with a ASV different than the CPAP?

You're correct, this is NOT an easy one . . . breathing is much different with an ASV machine and it's a little difficult to explain.

I have used both the ResMed and PR ASV machines. Each of them uses a different algorithm, but their objectives are the same -- to calculate your breathing rate, monitor your adherence to that rate and respond if you deviate. The ASV will continue to "monitor" your inhalations and exhalations and "adjust" the breathing rate during the night; however, when you deviate from the calculated breathing rate, the ASV will respond. Many threads have been written about this, but a very "simplistic" explanation is that it is sort of like two people dancing and "adjusting" to the other person's moves. Even though YOU are suppose to be leading (since you're the one breathing), it surely appears that the ASV is the party leading. To continue with the dance analogy, some people adjust quickly to dance moves and some people struggle. It's the same with ASV therapy.

The "difficult" aspect is that when the ASV detects deviation from that calculated rate, two things begin to happen, either one of which, or both, can be difficult: The ASV will begin to send PUFFS of air to detect if the airway is clear and then begin to increase pressure. The pressure can increase in frequency and intensity very quickly, all the way to your Maximum Pressure Setting. Then as "you" adjust back to the calculated breathing rate, the ASV will discontinue and return to "normal" pressure support.

If you have "adjusted to the dance," it is normally not a problem during the night. However, for me, it can be particularly difficult when, 1) I first go to bed and, 2) when I awake "early" and "want" to go back to sleep. I "think" I am breathing "normally," but I am OBVIOUSLY not following the ASV's "lead" because it will not accept my breathing rate and continuously puffs and pulses. If I'm unable to "adjust," it's almost impossible to get to (or back to) sleep. The only remedy I've found is that, if I can't "get in step" with the ASV, I eventually have to reach over and turn the machine off. That forces it to "reset" the algorithm to re-calculate my breathing. With luck, I go (or get back) to sleep before it starts again.

Tim, the vast majority of time, I get to sleep with NO problem and as strange as this may sound, when I awake in the morning, MOST mornings it "appears" the machine is not even working -- it is just a very smooth breathing pattern. But here's a VERY BAD EXAMPLE. This morning I awoke at 3:00 AM, the ASV was doing a CRAZY dance -- I could do NOTHING to get in sync with it, so I turned it off. Normally, I "think" the machine take about 4 - 5 minutes to re-calculate the breathing rate, but this AM it seemed like within 30 seconds it wanted to change the "dance" again. After turning it off a second time, I realized that I was NOT going to be able to "adapt" to it, so I got up at 3:15AM. But, again, that is extremely unusual.

Well, I guess I overworked the dance analogy, but hopefully that gives you a little understanding of the "difference."

Come back with information regarding which machine you get and your experiences.

Best of luck with your therapy!

[traveling Utz]

That was an excellent explanation and very.. Descriptive..

I appreciate the info.. It definitely helped..

[sawinglogz]

My compliments on advocating for proper care for yourself! It turns out I was lucky that my lab wasn't willing to provide me a CPAP after my first titration study. They saw the centrals and required that I come in for ASV titration. I can't believe they missed 225 in your study!

Both the current PR and ResMed ASV models are fully data-capable, thank goodness. It's only at the CPAP/APAP level where they still play games.

Grand-Pap had a great explanation of what it feels like for the ASV to "suggest" that you breathe right now.

But the biggest immediate difference is between CPAP+EPR and Bi-Level. With CPAP+EPR, you're usually at the higher (constant) pressure. Then when you exhale, the EPR drops the pressure somewhat to make it easier to exhale.

With Bi-Level, it's the inverse. It sits at the lower pressure normally (EPAP) and boosts the pressure when it detects you inhaling (IPAP).

ASV is essentially bi-level with a few extra bells and whistles: variable pressure support (also available in auto bi-levels, I think), variable EPAP (only on the PR ASV), and the big one, "back-up rate". The back-up rate is when it decides that it's been too long since you last breathed and switches to the higher inspiratory pressure. It can be set to a fixed interval or Auto.

[sleepinow]

@ above

Thanks for that quick explanation!!

[n0hardmask]

That was an excellent explanation and very.. Descriptive..

I appreciate the info.. It definitely helped..

TU,
Good for you!! You're now at the branch in the road, and you know what the path is. ASV is not particularly easy, but the most passionate help on this forum is from the ASV crowd..
Take heart; it took me 18 months of grinding on the Autoset, 2 sleep studies and two useless Md's before I empowered myself, upgraded to the S9 biPAP, then after seeing the centrals, bought myself an ASV. I'm on Resmed machines.
There's lots to read anad learn about the transition to the ASV therapy. Take time and read as much as you can; after you use the machine awhile you'll want to go back and reread with a little experience under your 'belt'.
CONGRATS and welcome to the CPAPTALK ASV club. earl

[JohnBFisher]

Sorry you had to join our club, but I can't say enough how impressed I am with how you handled it. Spectacular.

[Xney]

Great job being your own advocate, and also being prepared so your doctor can help you the quickest! (And I'm glad you found one who understands your problem)

It takes a while to get used to ASV, it's like a weird rollercoaster, but you can get used to it.

Also, some people adjust to it very quickly, it's just not the norm. Bottom line is it will probably help your sleep greatly and will be worth the "adventure" of starting out on it.

[traveling Utz]

Thank you all!!

I am sure I will need more guidance.. and have more questions..

Tim

[Nooblakahn]

I must be the odd duck. I was on reperonics cpap, bipap, bipap st and bipap asv during titrations and had trouble getting used to them. The s9 asv machine that I was prescribed to me was a breeze to get used to. I was below 5 my first few nights, and now most nights I am less than one. John B Fisher described the differences in the 2 machines, that the s9 watches your breathing more closely and auto adjusts itself to your breathing. The Resperonics more forces you to adjust to it. (his description was a litte more in depth, but thats what I took away from it.) Also, if you need more specific settings, the repsonics can be more dialed in, whereas the s9 has less settings.

Sorry to hear you've had to go through all that to get what you need, but glad to hear you stuck with it.

[traveling Utz]

So.. I got my letter from the Sleep Lab.. It says.. We have you scheduled for your CPAP titration.. NOT ASV...

I thought, well maybe they just use a draft format..

Well.. I called to make sure.. OOps, Sir.. We madea mistake.. Your are scheduled for ASV..

Lets hope they are set up for it when I get there Monday night..

[Xney]

Oops we made a mistake which will require more sleep studies and more money for us!

>:|