What a long, STRANGE trip its been!!!!!

[GoofyUT]

For those of you who aren't familiar with my history, I was diagnosed on April 4th after a split-night study that occured on my last night in the CCU following my first (and LAST, I hope) heart attack. I demonstrated an AHI of 23 during that study, and was titrated to a pressure of 10 cms.

A few days later, the DME showed up with a Fisher & Paykel HC608 CPAP and an Activa mask, and away I went down the rabbit hole! A week later, I switched to the Swift, which I liked a lot better because it allowed me to read in bed. But, I slept poorly, often ripping the mask off in my fitful and short-lasting sleep, and once, pulling the entire CPAP off the night stand as I thrashed around. I awoke the next morning to find it faithfully running, sitting there on the floor, upright, as if nothing happened.(WELL built machines, those F&Ps are!!!!)

I began visiting this site daily and got bitten by both the APAP as well as the data collection and analysis bug. So, a month after I started, I switched out the F&P for a shiny, new Resmed S8 AutoSet Vantage APAP which I was dispensed by my DME on the presecription for "auto-titrating CPAP" cheerfully given me by my cooperative though somewhat laissez-faire pulmonologist.

I then suffered through four months of horrible sleep, spending hours awake in the middle of the night, fretting that I would NEVER have a good night's sleep again during those lonely early morning hours. Even the few hours of fractured sleep that I did get allowed me to feel somewhat clearer and more energetic during the day, and I undertook an aggressive exercise program as part of cardiac rehabilitation. But, i was MISERABLE!!!

I was SO MISERABLE, that I grasped at ANY straws that I could find here, and I tried out several different masks, including an F&P HC431A, a return to the Activa, the 2006 bad-boy Hybrid, as well as sveral different settings with my ResMed APAP, raising and lowering the floor pressures, the ceiling pressures, trying several different pressures of CPAP and entertaining several different theories about etiology. At one pont, I was convinced that I was sleeping so miserably because I happened to be one of those RARE individuals who was stricken with the newly-defined "complex sleep disorderd breathing" (CSDB). I began bugging my pulmonologist about this, but he was skeptical. I wrote that off as his ignorance, fueled in large part by the sentiments often expressed here that we, the users, know far more about this stuff than the stupid sleep docs do.

He suggested low dose melatonin which I simply dismissed as stupid. My PCP gave me samples of Ambien CR, but they didn't work. My PCP then gave me a script for an old standby, alprazolam 0.5 mg at bed, and I began to fall asleep more easily, but would still awaken frequently, and was still MISERABLE.

One day during the dead of our intermountain summer heat, I happened to check Craig's List here in SAlt Lake on a whim, and managed to acquire a virtually brand new (5 hours) REMstar Auto w/C-flex and a brand new ResMed UMFF mask, FOR A SONG. I switched to it hoping for a miracle, and found one. I almost immediately began sleeping better and began sleeping through the night. It turns out that I was not a good match for the treatment algorithm of ResMed AutoSet machines, and I matched well with the Respironics algorithm (though I continue to admire my ResMed S8 highly for a variety of reasons and use it as my travel machine).

I continued to collect and analyze data almost compulsively, and tried several more masks, before returning to my beloved Swift. I continued to exercise, lost a TON of weight, got into good shape, and began taking melatonin 300 mcg. at bed.

I have contineud to sleep restfully and restoratively throughout the night and I can count on getting a good 8 hours of uninterupted sleep every night. I FEEL GREAT!!! I am happier and healthier and fitter and more untroubled than I have been in 15 years!!! I feel like a kid again, and I'm SO GRATEFUL that xPAP therapy has given me my life back, and then some.

But, I didn't intend this rambling waste of time just as a testimonial for xPAP. There's an ironic twist to it.

I have continued to compulsively collect and analyze my efficacy data using Repironics' excellent EncorePro software, and particularly relying upon Derek's Nobel-worthy MyEncore add-on. I have now managed to accumulate four months of consistent data, and the marvelous AHI -v- Pressure graph that Derek has blessed us with has allowed my to determine my ideal pressure.

So, i set my REMstar Auto back to CPAP mode with that pressure dialed in and spent the last week on straight CPAP with my Swift. After a night's worth of adjusting back to fixed pressure, I slept well during the week and was anxious to read and analyze my data today, after a week's experience on CPAP. Happily, the numbers reported today confirmed my subjective feeling that I had had my best week ever. Average AHI for the week was 0.3.

So, here comes the punch-line, for those of you foolish enough to have spent the time plodding through this. Wanna guess what this ideal pressure born of four-months of data collection was? That's right: 10 centimeters!!! The VERY same pressure that I was prescribed by my pulmonologist when I started this long, strange trip 9 months ago.

I honestly feel somewhat foolish that I put myself through such torment trying this mask and that, this machine and that, and this pressure and that for all those months, when I find myself winding up at where I would have been had I simply stuck with the pressure and equipment originally prescribed and dispensed to me back in April.

Now, there have been other factors along the way: my exercise and diet, changes in lifestyle, my heart-attack prevention regimen, etc. Who's to know how much these contributed to my good sleep?

I share this with you only as MY experience. It may have NO meaning for you. But for me, I'm left wondering whether a little knowledge really was a good thing, after all.

Chuck

[ufo13]

Chuck:

All the best to you! All's well that ends well!


Steve,
ufo13

[kteague]

Chuck,

You know what would be interesting now - to see what pressure the sleep lab would titrate you at after the weight loss and lifestyle changes. Hmmm.

No one can say you haven't done your part to make your treatment the most effective it can be. My seem like a circuitous route, but look at all you've learned and the people you have met!

Knowing what you know now, if you had it to do over again, what would you do differently?

Kathy

[GoofyUT]

Steve, I ought to dedicate my journey to you. Your splendid fix for the Swift has allowed me to be fully successful both using and enjoying it, and we all know that the interface is THE most important factor in making this work. Mine would NOT have worked had it not been for your ingenuity, and for that, I am deeply indebted and appreciative.

Thank you so much, Steve!!!!

Chuck

[Goofproof]

Just a idea, your original pressure of 10 cm, that's working so good for you now, may have been wrong then and right now due to the changes you have made in lifestyle and health.

The main thing is you have found your answer, a path we all must take. Jim

[blarg]

Great story! Thanks so much for sharing.

I think it's also true that perhaps you needed to try a few masks to be more convinced of how perfect for you the swift was. Or you might have just adapted to the entire process much more effectively given the time to adjust.

[JeffH]

I have been on regular CPAP for the last six years and on Tuesday of this week got my first APAP machine. My RX is for a pressure of 12 (from 6 years ago). The 90% reading on my APAP the last three nights was 14.5, 16.5, 15.8.

I really believe that our pressure needs change.

[Wulfman]

Chuck,

I'm glad to hear that your therapy is FINALLY working well for you.
Not all of us were fortunate enough to be titrated with the (possibly) correct pressure to begin with and had to figure it out for ourselves. As you noted, and has been discussed on the forums every day is that the mask is one of the most crucial components of this therapy.
If it doesn't fit.....you're in deep shiiiiii........well, you get the idea.

But for me, I'm left wondering whether a little knowledge really was a good thing, after all.

Chuck

Something tells me that you've gained more than a LITTLE knowledge about this therapy.

If everything had been "perfect" with your therapy, you probably would not have been looking for or have found this forum.

How many people get so frustrated that they finally give up?

ANY knowledge a person gains about improving their own therapy is a GOOD thing!!!

Best wishes,

Den

[DreamStalker]

Congrats Chuck. Your journey to your own success has also helped and inspired others like myself. I, and I’m certain others, have benefited from your journey and experience.

Again, congrats and thanks!

- roberto

[-SWS]

Chuck, congratulations! I'm admittedly hoping that we can continue to learn from both your experiments and wisdom. As a side note, Mayo researchers now have CSDB estimates up at around 15% of the SDB population. That estimate is so preliminary, however, that it's clearly debatable.

I recall at one point during your July '06 experiments also thinking that you may very well have been a marginal case of CSDB. I specifically remember being amazed at those extraordinary HI fluctuations, that you seemingly affected at will (with pressure and mask changes). But uncontrolled data, let alone short-term uncontrolled data sure can be misleading. I also remember at the time thinking you were better off on CPAP instead of APAP.

Do you happen to have some long-term pressure -v- AHI graphs that you wouldn't mind sharing with us? Either way, thanks for all the information that you have shared so far! It's really great to hear that you are sleeping and feeling better these days! .

[GoofyUT]

I want to make it clear that, in my journey, I have learned SO MUCH, and I'm so grateful for the people I've met and for the helping hands extended to me along the way. I've met many brilliant people here, folks who have been willing to share their knowledge and their wisdom and their thoughts with me, and for that, I am MUCH richer! And so thankful.

The point of my tale is simply that the distress that accompanies all those miserable, sleepless nights is SO FRUSTRATING and unsettling. It causes us to grasp at any straw that we think might offer simply a good night's sleep. It really is Alice's rabbit hole that we've all entered together.

But, I also want to point out for those newly on the road, that there IS a light at the end of the tunnel, and its so nice, and bright, and sunny and warm on this side. So, don't fret or give up hope!!

Chuck

[-SWS]

We'll take that as an ever so indirect "no graphs" statement, Chuck. Your message is, indeed, a great one for newcomers and old timers alike.

Congratulations once again on your good sleep! Chuck's good message, once again:

The point of my tale is simply that the distress that accompanies all those miserable, sleepless nights is SO FRUSTRATING and unsettling. It causes us to grasp at any straw that we think might offer simply a good night's sleep. It really is Alice's rabbit hole that we've all entered together.

But, I also want to point out for those newly on the road, that there IS a light at the end of the tunnel, and its so nice, and bright, and sunny and warm on this side. So, don't fret or give up hope!!

[Yoga]

Congratulations, Chuck! Your story was very interesting and glad to hear you are now getting good results.

Unfortunately not all of us are properly titrated. The first time I was titrated at a pressure of 7 and struggled as you did. I felt that I was simply not getting enough air so I slowly upped the pressure in increments to 11 and 12 which felt about right. I had the Respironics Pro. When RG recommended the Respironics Auto, I paid for the purchase, got Encore Pro, and used Derek's excellent program. It confirmed that 12 was the proper level.

When I was later titrated by a good sleep doctor, he agreed that 12 was the proper level.

However, I still have difficulty falling asleep unless I am really tired. I recently tried Ambien CR which works (plain Ambien did not). However, tonight I did not take it as I don't want to get hooked on it and don't have to go anywhere tomorrow. However, I haven't been able to fall asleep yet.

My favorite mask is also the Swift with the addition of Padacheeks fix which prevents the mask from riding up in the back.

[SelfSeeker]

Chuck,

Thank you for sharing your experience.

I am glad you found what works for you. I am glad you are on these boards.

Yes, it can be fustrating. Knowing that I will get it right one day keeps me going.

Enjoy your restful nights and energetic days. You worked hard for them.

I want to make it clear that, in my journey, I have learned SO MUCH, and I'm so grateful for the people I've met and for the helping hands extended to me along the way. I've met many brilliant people here, folks who have been willing to share their knowledge and their wisdom and their thoughts with me, and for that, I am MUCH richer! And so thankful.

The point of my tale is simply that the distress that accompanies all those miserable, sleepless nights is SO FRUSTRATING and unsettling. It causes us to grasp at any straw that we think might offer simply a good night's sleep. It really is Alice's rabbit hole that we've all entered together.

But, I also want to point out for those newly on the road, that there IS a light at the end of the tunnel, and its so nice, and bright, and sunny and warm on this side. So, don't fret or give up hope!!

Chuck

[SelfSeeker]

JeffH,

I do not know what you set your minmum pressure to. Set it just abit lower then 12. Try 10-14, and see what you get. This way you can make sure the higher pressure is not centrals.

(If you keep getting higher and higher pressures and you have a tendancy for Centrals, the higher pressure may be causing the centrals.)

I have been on regular CPAP for the last six years and on Tuesday of this week got my first APAP machine. My RX is for a pressure of 12 (from 6 years ago). The 90% reading on my APAP the last three nights was 14.5, 16.5, 15.8.

I really believe that our pressure needs change.