What can you do anyway?

Liam1965 wrote:Interesting followup....

I was told today by my sleep doctor that the reason why Auto-PAP is probably not right for me is that Auto-PAP only detects ... (ok, it's early, I'm forgetting the medical terminology) events where you actually stop breathing. He says that there are a number of apnea events, not all of them involve a full stoppage of breathing, some (and these are the sort I apparently have a lot of) involve awakening BEFORE the breathing stops enough to be detected as a breath stoppage.

His opinion is that someone like me on an auto-pap would actually NOT get much benefit, because the machine would detect that I was breathing fine all night, and so would give me the minimum pressure.

Now, I don't know if he was just (ahem) blowing hot air, but that was his opinion.

And in the "As always, the medical communities left and right hands don't speak" category, there's another sleep doctor, at a different clinic, that Kim, my DME, says ONLY prescribes APAP.

Liam,
Unfortunately this is another thing where YMMV (Your Milage May Vary) Your doctor is probably talking about RERA's (Respiratory Effort -or Event- Related Arousals. I had those too - 112 of them. They can be caused by many things, such as allergies, asthma, neurological diseases, etc. etc. etc. Depending on what causes them, cpap may or may not work, apap may or may not work, the various different algorithyms used by the different apap manufacturers may or may not work, etc. Unless the doctor has a very good idea of what was causing the arousal's (and that wouldn't be shown on an average sleep study) he was blowing hot air.
I really think that you should see if there is any possible way you can rent a machine (or two or three) for a trial period. That is really the only way you can find out for sure if a particular machine will or will not help. Some apap's are quite good at taking care of RERA's from some causes, and no good at all at taking care of them from other causes. Depending on the cause, cpap may not take care of RERA's. For some types of RERA's, apap's are actually much better and will take care of arousals that cpap won't touch, but for some types of RERA's, apap's can be worse.
Debbie

hhunt,

Thanks for the kind words!

My wife tells me the same thing about pursuing a career in the sleep field. For the time being, the business I'm in is keeping me interested. What motivates me is doing what I can to bridge the HUGE gap between the poor service and astronomical prices of the traditional DME and what many of us have come to know as the "new standard" set by a true inovator in the field, cpap.com.

I think rested gal would agree that we (and others) are lucky to have so many of you guys putting forth the effort to come to the forum and find a better way to get good cpap therapy. It's very satisfying to be able to share what we've gone through and hopefuly help others to find their way.

From reading this thread tonight, there is an obvious bias toward APAP in the members of the forum who answered this question.

I have tried a very early diagnostic version of an APAP for one night - before they became a user item -- and one night with a C-flex CPAP.

I have to tell you that those two nights were the absolute worst nights I have ever had in the 10 years I've been on CPAP. The pressure changes and the changes in noise level kept me wide awake almost all night long.

And with the c-flex, I had the opposite feeling when exhaling. I found it more difficult to exhale than I do with my normal CPAP at 12 cm. It just felt weird to me.

So everyone is different. I also know someone who switched to APAP and started feeling more fatigued. Her sleep doc had her do another titration with half on CPAP and half on APAP. In her case the APAP seemed to stop the apneas but still caused an arousal due to either the noise or the change in pressure. Her apnea was treated but she was still waking up!

There's certainly a lot more enthusiasm here for APAP (although the people replying to the topic may be somewhat self selected) than I see in the A.W.A.K.E. support group meetings I've attended. But I'm not sure how many of the folks at the meetings are actually using APAPs, either.

I may have to see if I can borrow an APAP and give it another try to see how my readings show up.

I'm quite comfortable with my CPAP but it would be "nice to know" info.

Dave, try the various makes of APAPs too. I think that can make a big difference. I used the Resmed Spirit for a month and never felt really rested in the morning. Since switching to the PB 420E, I feel great. Each make has different algorithms and I think that can make the difference.

Hey Dave,

Not good for us APAP fans when the chairman of the ASAA thinks APAPs "feel weird." Many of us using (and recommending) APAPs have used them right from the start. In my case I did a lot of research before I got my first machine and got my Doc to write a script for an auto. Many of us have experimented with setting our machines at a fixed pressure to see what it's like and find that feeling a little weird. The pressure on the autos does not jump up and down as rapidly as you might think. To me it seems to leave the pressure elevated longer than necessary, but probably does so to cushion the change.

If your cpap is working for you, I'd stick with that. I'd love to have you try an auto long enough so that it doesn't feel "weird" for you though.

Janelle wrote:Dave, try the various makes of APAPs too. I think that can make a big difference. I used the Resmed Spirit for a month and never felt really rested in the morning. Since switching to the PB 420E, I feel great. Each make has different algorithms and I think that can make the difference.

See, this is one of my biggest resistances to the APAP. I've already got enough variables to muck around with. CFEX settings to try and not try, various heat and humidity levels, and the damn trail of mask after mask after mask to find the one best suited to my personal needs.

Somehow, the idea that the different APAPs use different algorithms means to me that if I switch, I'll need to start a trial-and-error with the APAPS like I'm doing with the masks.

Liam, who finds it interesting how much more we talk about algorithms since Al Gore invented the internet.

Liam said:

Liam, who finds it interesting how much more we talk about algorithms since Al Gore invented the internet.

Especially since Al-Gore-(didn't have any) Rhythm.

Dave, Years ago automobiles came with standard transmission. Now we have automatic. Yea you can still get a standard but if I am pulling my camper thru the mountains I sure appreciate that automatic. It with the assistance or many computers installed in todays automobiles knows exactly when to shift . Saving fuel and offering a smoother ride. I remember when the same drive was work . Left foot clutch right hand shifter. Now I can enjoy a cup of coffee.
If you are happy doing things the "old fashon way" fine. Go back a bit further in time and get a tracheostomy.

Isn't technology wonderfull !

Hhunt, I also have Blueplus minnesota. talked to them 3 times and they said they will cover a new machine, mask and software. I got a remstar auto with c flex, ff ultra mirage and the encore software. The price I paid was$1167.00. The local DME wanted $2250 just for machine. Luckily I could borrow a brothers credit card to buy the products outright. I submitted the forms a week ago so haven t received a my refund.Since I have a co-pay so I am saving tons of bucks. The added cost for this machine to me is well worth it. After all, i m spending 1/3 of my life using it!!

Anonymous wrote:Dave,
If you are happy doing things the "old fashon way" fine. Go back a bit further in time and get a tracheostomy.

Isn't technology wonderfull !

I think everyone who finds help with a PAP device becomes very passionate about what they think is best. We're all entitled to our personal opinion.

Since you wrote as a guest I can't reply privately.

What we WANT is not always what we NEED. As a regular computer user, I can very easily desire a more powerful, more feature-packed computer, but right now what I have does all that I need to do, and my budgeted funds are a little low for a new computer. So I stay with what works for me. You can recommend a new system with all the bells and whistles, and I may take your recommendations into account for the future, but I don't have to change what I'm using at the moment simply because there is newer, perhaps better, technology.

I'm a very compliant patient and feel good using my current treatment mode. I have no problems with my treatment. There is no reason for you to insist that your preferred mode of treatment is the only way to go. There are multiple options to treat OSA. What works for one patient may not work for another. I know folks who tried various forms of PAP for several years but got no relief, but who were helped with an oral appliance. I hate to have anything in my mouth, so I don't think I can even stand to be fitted for an oral appliance, much less wear one every night. But that's my opinion about me. We all have to keep our minds open, even while expressing our opinions.

But you know, with a trach you don't have to pay for a PAP device or worry with a mask. It might be a good solution for you, too, even in this modern world of technology! I know of one patient who has been quite happy with his trach for over 30 years, even when offered the chance to move to a PAP device.

Everyone has the right to make their own decision in conjunction with the medical guidance of their physician.

You enjoy your APAP and I'll enjoy my CPAP.

Dave I think our concern was that you had only tried one APAP and dismissed them summarily. That's like saying you don't like sherbert when you tried some orange sherbert and hated it. So, you might have liked the lime or pineapple if you had tried them. Similarly, you might have liked an APAP with CFlex or one that detects central apneas or not.

Objectively, if you are conducting an experiment you should try all the options, not just one instance of the option.

Janelle wrote:Dave I think our concern was that you had only tried one APAP and dismissed them summarily. That's like saying you don't like sherbert when you tried some orange sherbert and hated it. So, you might have liked the lime or pineapple if you had tried them. Similarly, you might have liked an APAP with CFlex or one that detects central apneas or not.

Objectively, if you are conducting an experiment you should try all the options, not just one instance of the option.

Well, I thought I was expressing my opinion that for ME I wasn't happy with what I had tried, either C-flex or APAP in my personal situation, and shared that I had heard some other negative comments. When I also say that I recognized a lot of positive APAP sentiment and that I would need to take another look, I didn't see that as "dismissed them summarily".

Conversely, has everyone who has dismissed CPAP tried more than one machine? It sounded like some of the APAP fans went straight to APAP without passing by a straight CPAP. Is that trying all the options? IF I can get the chance to try multiple APAP models, I certainly will, but that's not always easy to do.

There is lots of variability in the patient base and there are reasons to use all of the machines, but the key issue is being compliant with whatever form of therapy a patient is using and making sure that the therapy works. That choice of machine will vary by patient based on cost, insurance, severity of apnea symptoms, and the physician's recommendation, among other things.

We can all cheer for our favorite baseball teams, but collectively we want to enjoy the sport of baseball. Similarly, we all have our favorite PAP devices and interfaces, but collectively we should all be using them every night even as we argue/discuss which one is better than the other.

Dave,

I wasn't going to say it, but just FYI, your post came so close on the heals of talking about you as Chairman of... (I'm tired, I forget what you're chairman of), that your post came across (at least to me, and apparently to others as well) not as "My personal opinion" but "the opinion and recommendation of ..." the group. American Sleep Apnea Association was it?

I know that's not how you INTENDED it, but that's kind of how it came across, and that's why so many people bristled.

Being in a position at work where stating my opinions can sometimes come across as a statement of "fact" or "the way things should be", I'm quite familiar with the phenomenon...

Liam, who really loves the word "phenomenon", but can't hear the plural without hearing the "Mana mana" song from Sesame Street.

Hmmmm. I got "guested" by the site. Sorry.

I guess it's obvious, since I signed it, but that last one was from me.

Liam, master of the obvious.

Liam,

Thanks for pointing that out in your "guest" post. Either way the fact that the Chairman of the ASAA thinks using an auto-pap and/or C-flex "feels weird" does not bode well for the advancement of the auto-pap or C-flex by the organization.

Dave,

It's apparent that your personal xpap preferences are most likely out of the ordinary considering your lack of comfort using apap/C-flex. I don't mean this to be any kind of critisism, just seems your stated reaction to using C-flex specifically is the exact opposite of it's intended effect. This and what Liam stated may account for the response to your comments.