CPAPtalk.com

schaefage wrote:Do they have this monitoring software that works with Remstar plus?

No. Although it has Smart Card capability, the only information provided is compliance data (e.g., hours of usage).

schaefage wrote:You know...It looks like most of you have auto CPAP machines....is this just a coincidence, or is auto cpap the machine of choice for the more discerning cpap user.

APAP is the machine of choice for those of us who want to tinker with and optimize our own therapy.

It sounds to me like you've got a really good argument to lobby with your physician for an APAP machine. Your physician openly admitted she had no idea what your true pressure need was. She really should have prescribed an APAP in the beginning. If she had been apnea sufferer herself, I expect that she would have immediately prescribed APAP to minimize your torment. It is obvious from your description that the CPAP has not resolved your apnea.

If I were you I'd request an APAP now regardless of the upcoming sleep study results. Since you didn't have a representative night's sleep at your previous titration, you may not this time either. Why is this titration likely to be any different? If you take sleeping pills, then the results may still be skewed (as has been recently discussed here).

If I were you, I'd want relief as soon as possible. I'd simply ask my doc to prescribe an APAP, and I'd let her know that I wanted to be in charge of my own therapy. Come to think of it, that's pretty much what I did, and I didn't get any argument at all from my sleep doc, just a caution that he wasn't sure insurance would cover my machine. (As it turned out, I didn't get any argument from insurance either. They covered 100%.)

As for apnea induced A-fib . . . There's little that good cardiologists will be willing to do for that, particularly since you're A-fib free normally. I've had a conversation about this with my cardiologist a couple of times now. The drugs they use for A-fib all have potentially serious side-effects. My cardiologist has said that in this case the cure is worse than the disease.

It sounds like you're very close to getting your issues identified and resolved, Kent. Hope you'll keep us informed of your progress.

Regards,
Bill

Hey Bill,

I'm not sure if it is afib, but it sounds like it could be. That's scary...

I guess the problem getting APAP is that insurance already paid for one CPAP machine in it's entirety. When I talked with the home health cpap supply guy, he said that insurance was deciding to just let me buy the machine with one copay instead of having me rent it. Which I was excited about at the time. As I look back, I should have insisted that I rent the damn thing until I see how it works for me. But I was young and dumb.

But I can tell the doc, that I don't care if insurance pays, I know where I can get a good APAP for around $600 and I'll pay for it myself. Or submit it to insurance first so that I can get closer to meeting my deductible when I do pay it all myself.

I do think that apap with the computer program would increase my compliance because I would be more invested in my therapy and not just a stepchild of it.

By the way you said you had talked to your cardiologist about your afib...do you still experience it with the APAP?

Thanks for your help,

Kent

Hey Snoredog,

I think I will be ok increasing to 9 from eight.

You know it is interesting, the cflex has started to bother me....like I almost crave the pressure of regular cpap...so I turned my cflex from 3 to one and now if feels a LOT better. I don't know why this would be, maybe am just craving more pressure in general...dunno

Also, the way that the bounding heart rate happens is this: I am in a dream state, I am aware that I am in a dream state--I am enjoying it, I feel close to awake the whole time, I don't feel bad or panicky and feeling no chest pressure, etc. Then WHAM, I pop out of the pleasant dream state and there it is--chest pressure, bounding heart rate, etc. Almost like I came back to life--scary to say....so maybe I am becoming to bradycardic. My pulse during the sleep study did run between 45-65. But this happens once or twice per week.

And it seems like it happens more readily if I am wearing CPAP, because I never remember this happening in my pre-cpap days--In those days I would wake up in a puddle of sweat from a dream state. Now it is waking up with the heart thing from a dream state. Am almost sure I am waking up from Rem, but the type of apnea I am not sure if it is central or obstructive. As the doctor said there were no AH at a pressure of 8, but I never reached rem.

Thanks for your replies, they are helping me get my mind around this thing.

Kent

schaefage wrote:As I look back, I should have insisted that I rent the damn thing until I see how it works for me. But I was young and dumb.

Yeah, it happens to a lot of us. I got one machine paid for by insurance, but had to pay for my APAP out-of-pocket.

schaefage wrote:By the way you said you had talked to your cardiologist about your afib...do you still experience it with the APAP?

I went through a period after starting xPAP when A-fib was hardly noticeable, but at the time I was also taking steroidal eye drops (for macular edema). I quit taking those finally a few months back, and when I did I began noticing instances of A-fib/A-flutter, not bothersome the way you describe yours, but noticeable. Exercise and diet make a difference though in the A-fib frequency and severity, so I'm optimistic that with a little determined effort on my part to improve both, that the episodes will cease altogether.

The nice thing about xPAP therapy is that by removing the nightly assaults to the body, the body has time to heal itself. That's my experience anyway.

Regards,
Bill

Just one other thing to think about--it is the age of specialization--while some cardiologists are "generalists", some are "plumbers" (do angiograms and angioplasties/stents), and some are "electricians" (arrythmias/conduction problems). You might need an "electrician" AKA Cardiac Electrophysiologist.

Schaefage:
C-FLEX can cause some people to have "breath-stacking." For some, the action of C-FLEX causes them to start inhaling BEFORE they fully finish exhaling. The CO2 builds up and they start panting, breathing fast, heart racing... then they wake up, which lets them get their breathing back into a normal cycle.

So, I would encourage you to follow through with talking with your Dr., etc., but as an experiment, you could try turning C-FLEX completely off, not just down to 1, but fully off. You have to get into the clinical menu to do this. Give it a try, you might be pleasantly surprised! And, if not, you can always turn it back on.

I reached the "walking dead" state last summer and fall before I was retested and confirmed a diagnosis of sleep apnea that I had received 17 years ago and basically ignored for 17 years. During the fall in discussions wiht several doctors and a therapist I came to realize that the absolute exhaustion and sleep deprivation left me open to obsessing about my health and had developed a "generalized anxiety disorder". I started taking an SSRI and am still in that "ramping up" stage as I build the dose. I get a numb feeling through my body and heavy limbs and a bit of the shakes - however the most noticeable manifestation is when I wake up in the dark of the night and pull off my mask because I have been breathing poorly and my heart goes racing away. I sit on the side of the bed and track my pulse until it becomes normal, take a big drink of water and re-mask and go back to sleep. Very upsetting. Feels like I get a shot of adrenaline through my limbs. Just a suggestion from a "hoser" with a similar problem - but you may want to assess your anxiety level. Dave

Hey WillSucceed and Everyone,

You know when I originally had the titration, I had never experienced CPAP before and the air blowing into the nasal pillows felt unusual.

So I asked my provider for Cflex. And it felt good in some ways to be able to breathe without that pressure coming at me. But at the same time I felt the rhythm of my breathing with Clfex was "off". Maybe like that "breath stacking" you talk about. It was like the next inspiration was coming before I completely exhaled. Like the inhale and exhale were "two freight trains racing each other" and I was along for the ride...lol.
,
But last night I turned my Cflex to 1 as I said, and turned my CPAP pressure up only one to 9. And I felt like I was in "rhythm" with the CPAP. It sounds wierd but my insp/exp felt nicely "cradled" by the CPAP.
I never felt this way with CPAP8 CFlex3--it always felt awkward when falling asleep with it.

Now if CPAP 9 Cflex1 continues to feel this good when I am in other sleep stages, I don't know yet--how would I know.? My logic could be faulty, but I feel like if the therapy is superbly comfortable with sleep onset as opposed to uncomfortable/awkward with sleep onset, then I am on the path to having superbly comfortable sleep. But this may be my foolish pipe dream. lol

Let me know what you guys thinK about this logic. You know, even though I have been waking up with these rapic heart beats about once per week, you guys have made this process much more fun and less anxiety provoking. It's sounds a little mushy, but it's kind of like solving a mystery novel. Of course I would like it to be solved.

Titration is on March 26...I am leaning very heavily toward APAP with the software. I found it for around 600 on the intenet. If my doc says "oh, insurance will surely not pay this" I will just pay for it myself--because it looks like it's worth it.

Thanks guys!!!!!!!!!!!!!!!

Kent

Posted: Sat Feb 17, 2007 12:52 pm Post subject:

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Anyone,

I would like to know how to make the "quote windows" when replying to a post. Would appreciate instrucitons. They look like the text below but with boxes around them. Sorry, I am not overly technical...lol.
"schaefage wrote:
As I look back, I should have insisted that I rent the damn thing until I see how it works for me. But I was young and dumb.

Yeah, it happens to a lot of us. I got one machine paid for by insurance, but had to pay for my APAP out-of-pocket.

schaefage wrote:
By the way you said you had talked to your cardiologist about your afib...do you still experience it with the APAP? "

I had huge great hopes for the wonder of C-FLEX when I started therapy a couple of years ago. The number of times that I woke up panting and gasping was terrible. I spent some time talking with the respiratory therapists at work (I'm in a large teaching hospital) and when I described the symptoms, like you described, they all talked about breath-stacking. Their collective advice was to turn the C-FLEX off entirely so that I could see how I did without it.

Success... no more breath stacking, no more panting/gasping, no more being awakened a couple of times per night. I fully suspect that I am still having some micro-arousals from the apnea, but NOT from C-FLEX anymore.

C-FLEX does work great for many, many people but it is not the definitive answer for making treatment comfortable.

Seriously, try turning it off completely for a couple nights and see how you do. My hunch is that the panting/gasping awakenings will be gone and you won't turn C-FLEX back on.

Obviously this is something you need to discuss with your doctor, but I can relate. Before I started taking medication for my hypertension I had a very rapid heartbeat what seemed like almost constantly for a week. I could hear the blood pumping in my ears when my head was on the pillow. The medication took care of the rapid heartbeat, but I still had a lot of anxiety. Then I was prescribed a low dose of Paxil for anxiety and about a year later I got my sleep study and my CPAP. Haven't had any problems since, though I did wake up one night last week with the same thing you described. I awoke from a dream and my heart was just racing. I figured it had something to do with the dream, took a drink and went back to sleep. You probably have nothing to worry about, just get confirmation from your doctor.

Schaefage wrote:Let me know what you guys thinK about this logic. . . . it's kind of like solving a mystery novel.

I'm in agreement. Back in my early days on this forum, I told folks here that I couldn't use C-flex, because it pushed me toward hyperventilation. I had the same problem with BiPAP. Nowadays, however, I use C-flex at a setting of 2 and enjoy having it. I also used BiPAP for about six months and was comfortable with that.

Trying to solve that mystery for myself led me to conclude that the constant assault of nighttime apnea had caused a long-term shift in blood CO2 levels, very similar to the shift "apnea divers" deliberately induce by repeatedly "hyperventilating", only the shift was in the opposite direction. For me, I think after a month or so of effective xPAP therapy, my blood CO2 level simply normalized itself.

Of course, there's also the issue about needing to keep leaks under control . . .

Schaefage wrote:I would like to know how to make the "quote windows" when replying to a post. Would appreciate instrucitons.

OK, here's the easy answer - rather than using the POST button to reply, use the QUOTE button instead (which is in upper right corner, I think).

Here's the more technical answer: You can produce the quote box by bracketing your text as follows: [qu.ote="Schaefage"]I would like to know how to make the "quote windows"[/qu.ote], except leave out the periods in qu.ote, I threw those in to prevent the forum software from actually producing the quote box.

When I remove the periods in qu.ote, here's what happens:

Schaefage wrote:I would like to know how to make the "quote windows"

Regards,
Bill

Yeah,

I am going to use the pressure of 9 tonight with cflex of only 1. Hopefully, I don't have any of these rapid heart rate/waking up in a panick/chest pressure episodes.

If I had autopap right now I could evaluate each night and actually see if my "heart" episodes are corresponding to apneas.


I am DEFINATELY going to ask my doctor about APAP, and I will purchase it myself If I have to.

I guess if I want to go back to CPAP, I can do this. Also, If I want APAP to become CPAP then I guess I just have the tech make the upper limit 9 and the lower limit 9.

Thanks again guys,

Kent

For Hawkeye or others. Can you define CFLEX for me? I started on CPAP of 10 and then went to APAP for a bit and then back to CPAP of 10 with expiration relief of 2. Is that what you mean by CFLEX?

Also when I first described my "numb" feeling all over when I get up, with the heavy limbs and the shakes, two doctors and a respiratory therapist said I was probably breathing rapidly and blowing off my CO2. They did not say this in context of apnea because I had not had a sleep test at that point. I began to put this down to anxiety disorder but, Hawkeye, you have now mentioned CO2 imbalances in light of apnea. I do find myself breathing ragged and yanking off my mask at times. I wondered for awhile if my apnea was upsetting my CO2 balance.

I have a lot of central apneas and am now attempting a switch to ASV VPAP. Dave

C-FLEX is Respironics name for their method of exhalation relief. It is NOT the same as a bi-pap. With a bi-pap machine, 2 pressures are delivered by the machine. One pressure while the user inhales, and a second, lower pressure, while the user exhales.

With a C-FLEX equipped CPAP, the machine delivers only one pressure which is modified slightly during part of the user's exhalation. The user selects C-FLEX relief of 1, 2 or 3. This is not equal to 1, 2 and 3 points of pressure change like you are accustomed to when you adjust the pressure delivered by your CPAP. 1 means "least" pressure relief while 3 means "most" pressure relief.

With C-FLEX, when you start to exhale, the amount of pressure being delivered by the CPAP is reduced slightly for a VERY BRIEF period. It is NOT reduced for the entire time that you exhale, (like a bi-pap) but only for a brief moment. For many, many users, this brief pressure relief makes it comfortable for the user to exhale.

For some users, when the C-FLEX pressure reduction ends before the user finishes exhaling (this is how it is designed to work) the user starts to inhale BEFORE the exhalation is finished. It is this action that is called "breath-stacking" and causes the CO2 overload. The CO2 overload is what triggers the panting/rapid breathing as the user's body needs to blow off the excess CO2.

If your pressure is high, you MAY find some relief through C-FLEX but, and please be clear on this, C-FLEX is NOT the same as bi-pap.

You mentioned in your post that your pressure is 10. This is not an overly high pressure (although, I realize that all things are relative to the comfort of the individual) and, as such, you might find that your panting/discomfort stops if you fully disengage C-FLEX. You will have to get into the clinical menu to do this.

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, C-FLEX, CPAP