I Sure Wouldn't Call This Success By Any Means

Well, after 56 days for which I have statistics (58 days on PAP) at a pressure of 6 as determined by my titration study I'm still not sleeping many hours. Period.

I'm only averaging 5.49 hrs sleep a night. I'm not cheating other than 4 less than 2 hour naps during those 56 days. And, yes, those 4 naps were w/o my PAP.

My AI is okay: 0.4 per hour for 0.1% time in apnea. But my HI is averaging 11.6 events per hour. My median leak rate has been 0.18%.

I'm waiting for my recording oximeter to arrive so I can check my 02 saturation during the night as well.

I'm using the ComfortLite 2 nasal cushion and it isn't causing a problem. I am not getting up as often to go to the bathroom, usually just once a night, but when I wake up the second time I'm done sleeping. I can't get back to sleep. Mind is awake and that means FORGET about any more sleep.

Actually, I am sleeping LESS since starting PAP. And much more erratically. I'll be doing a printout of my stats including some overnight oximetries and sending them to my sleep pulmo about mid-month to see what he has to say.

At least I'm not experiencing the EXHAUSTION I did the first 35 days on PAP. But I'm no less tired than I was before PAP and in fact am still somewhat MORE tired than I was before PAP.

Personally, I don't consider myself to have failed. Taking a page from Washington DC's book, I consider myself to have succeeded sub-optimally.

Liam, Optimally Challenged.

Sub-optimal is oh so correct! And darn expensive sub-optimal results to boot!

Slinky,

It took me a long time to really see an effect, but as you say that you are not arising to use the bathroom as often--that is an indication that your treatment is at least working a bit.

You are on the right path. Maybe you really need less sleep (in which case I am insanely jealous!! ) or maybe something else needs to be tweaked. Rested Gal said (quoted from another thread posting) in a recent posting that the insurance companies consider 4 hours a night to be compliant.

I would encourage you to keep using the CPAP, especially when you nap. You may be paying back sleep debt and the naps will help to do that.

And take heart; as I look back, I am doing FAR better than between Thanksgiving and Christmas last year. It has been just a touch over 8 months, and my improvement has been subtle but significant. From sleeping 12-14 hours a night, I am down to 8-9 hours a night. Who knows where that will lead?

I'm also wondering if there may be something about the CL 2 that shifts a bit, and then awakens you. Keep on tweaking!

And check for a PM from me. Best wishes!

Slinky, just a thought....

Your equipment profile says you're using the S8 Elite. Do you have "EPR" turned on? If so, then the exact cm's drop that EPR gives with each exhalation might be giving you slightly sub-optimal treatment....not allowing your prescribed pressure (and "6 cm's is pretty low pressure anyway) to be in place before you inhale again. Possibly that's why the HI is a tad high.

I think whatever single pressure I was prescribed, if I was gonna use EPR, I'd turn the single pressure up a corresponding number of notches. I'm not a doctor...that's just my opinion about how the way EPR is designed to work might make a person get less pressure than actually needed rather frequently throughout the night.

__________________

sleepydave discusses EPR

Oct 05, 2005 subject: Is EPR Really Bilevel? sleepydave (RRT, RPSGT, manager of an accredited sleep lab) discusses ResMed's EPR feature.

Excerpt:
"The baseline pressure returns to 10 cmH2O, but not until after inspiration has begun. In other words, inspiration is the trigger to terminate EPR, and instead of a CPAP pressure of 10 cmH2O with an expiratory adjunct, we are effectively left with BiPAP of 10/7
<picture of a graph>
This might not make a clinical difference if the patient ends up with the same results on BiPAP 10/7 that he would have on CPAP 10 cmH2O (which could be the case if there were only flow limitations, snores, or hypopneas). But if the new EPR-defined EPAP is below the apnea threshold, then there could be a problem.

In the second graph, the waveforms are superimposed to show more clearly that inspiration is occurring at a sub-therapeutic level:"
<another graph>

_____________________

Slinky, if you don't have EPR turned on, disregard all that.

EPR issues aside, have you been given an autopap trial to see if the 6 cm's you were prescribed is really enough most of the time?

And...pressure issues aside, it can take quite some time getting used to everything about this crazy kind of way of trying to sleep. A mask that's comfortable enough (or tweaked comfortably enough) to not keep causing arousals throughout the night from leaks or from the plastic of most masks digging into the face at times is the biggest single key, imho.

So many other things in the sleep environment can cause problems too, as can pain issues with underlying health issues like arthritis. Some meds can cause problems with sleep. There are so many pieces to the puzzle. Sometimes we're trading the more dangerous O2 drops for other kinds of sleep disruptions that can leave you feeling just as worn out as before, or even more so.

Hope you get it figured out and start sleeping better. Takes quite a bit of detective work sometimes to get it all going comfortably and effectively.

Slinky,
Your Apnea Hypopnea Index, aka AHI is 12! (11.6 for the hi + O.4 ai). I wouldn't call that sub-optimal. I would call it bad.

I notice your PSG could hardly be defined as satisfactory - 48 mins of sleep or 96 that is not a proper sample of you sleep.

My sleep was terrible on the titration night so I was given an automatic machine for titration at home. - If it were me, with the results you have, I would insist on an auto for 2 weeks of titration at home - or start my own self titration by moving up the pressure up very gradually every 2-3 nights, and checking my results and the way I feel.

Hypopneas can be sleep disruptors just as bad as apneas, and there is no reason on earth use cpap, and still have your sleep disrupted every 5 minutes.

O.

Thanks everyone. I've been gone most of the day and just got home a short while ago.

Ozij, I'm still new enough to all this to not really want to mess w/upping the pressure at all, tho I suspect you might be right. I'll be more comfortable w/that if my sleep pulmo okays it. I will ask him about it, of course, as you aren't the first one to suggest upping my pressure gradually.

RG, as far as the EPR I think you may be on the right track and that just turning the EPR off entirely might at least help. Its set at 2 right now. I'm not ready to give up yet by any means. I can be one stubborn ole broad but I am NOT a patient patient by any means!!!! And this IS frustrating to say the least.

I guess I am still more cranky than I thought. But at least I am not the witch I was those first 35 days!! So THAT is a great improvement! I was getting to the point even "I" didn't like me. And I usually like me a lot.

Ooops, sorry, Ozij, I didn't ignore your suggestion about a two week trial on autopap. I'll be suggesting that to my sleep pulmo when I send him the printouts about mid-month. I suppose I should 'ask' him about a two week auto pap trial but I'm still cranky enough I prefer to 'suggest' it instead. I have to keep reminding myself you can catch more flies w/honey than w/vinegar but lately that common sense approach just ain't cutting the mustard. I'm still more like a bull in a china shop than a ballerina on stage.

Besides, he looks like a slinky to me in my present state of mind!!!!

Not a doctor, nor do I play one on TV or the internet, but I'd agree with Ozij... your pressure is likely too low. Getting an apap for a trial at home to determine an optimal pressure would be a good route to take. Given the very short time you slept in the sleep study, that titrated pressure is suspect, anyway. DON'T GIVE UP! You say that the mask is ok for you, and that is a great first step. Many people fight mask issues, but it sounds as if your problm is the pressure, not the mask. Ask for a trial with an apap!

Best of luck to you.

Slinky-

It took me four months to get everything dialed in, and I was MISERABLE during that time!! I was defintiely sleeping much more poorly than I was pre-xPAP. I was disappointed, depressed, irritable, and like amny new-comers, obsessed with trying evry possible new mask, machine etc hoping to find SOMETHING that would work and just allow me to get a decent night's sleep.

But, I did get it dialed in, and now, I'm getting 8+ hours of good, restful sleep every night. More importantly, I'm feeling BETTER, HEALTHIER AND YOUNGER than I have in 15 years!!! I'm active, exercise frequently, have lost a TON of weight, and I'm enjoying my body like I haven't been able to since I was in my twenties.

So, don't fret, Slinky!Its a tough, twisted journey at first, but its SO WORTH IT!!!! And, you'll get here too.

BTW, I will celebrate my 1000th hour on my currrent APAP at about midnight tonite.

Regarding your numbers, do be aware that ResMeds tend to aggressively score hypops. Your Pulse/Ox will be very useful to help you to evaluate whether any of those hypops that your Elite is scoring result in ANY desaturations, and whether they are therefore, clinically significant or not. So once again, DON'T FRET!!!

Cheers!!!

Chuck

BTW, I disagree regarding the matter of EPR. It functions EXACTLY like a bi-level PAP, but with a FIXED pressure relief of 1, 2 or 3 cms and there are LOTS of folks who experience very successful therapy using bi-levels. I actually find EPR to be MUCH more comfortable and soothing than Respironics' C-flex. Just my opinion though.

Thanks, Goofy. I'll play around w/the EPR, I forget what it was originally set at, 3, I think. But after 35 days they changed it to 2. I"ll try 1, turning it off, and, just in case I remember wrong, 3 again, if I don't notice any improvement after 3-4 days at each setting.

Am I remembering right, that you have the Nellcor N-395 recording oximeter? Man! You got a heck of a deal! I'm seeing them for $499-$450 at best. Of course, it was already too late as I'd ordered and paid for the SPO 7500. And, I don't remember that any of them were new in the box. Some didn't come w/the finger probe, etc. I had thought if I found a deal like you found I'd buy it and resell the SPO 7500 to help cover my cost. Thinking, of course, I'd find a Nellcor for $300 or so. Ha!

A Nellcor N-395 hit eBay today with a starting bid of $250. It should go for around $300. Looks like it's in pretty good shape.

Good luck!!!

C

Thanks, Goofy. If I could get it for $300 .... I should be able to sell the new, in the box, software, manuals, etc. SPO 7500 for close to that I would think. I paid more but it would be a wash as the Nellcor is what our hospital uses in Pulmonary Rehab so I know they are a good unit.

GoofyUT wrote:BTW, I disagree regarding the matter of EPR. It functions EXACTLY like a bi-level PAP, but with a FIXED pressure relief of 1, 2 or 3 cms and there are LOTS of folks who experience very successful therapy using bi-levels. I actually find EPR to be MUCH more comfortable and soothing than Respironics' C-flex. Just my opinion though.

Neither I, nor sleepydave (if you go to the link to read his post carefully and look at the graphs he posted) are saying that EPR is not comfortable.

I think it's a bit of a stretch to say EPR functions exactly like a bi-level machine. I understand what you're talking about as far as the specific 1, 2 or 3 cm's of drop that can be set with EPR, but that's where the similarity ends.

People who have been prescribed true bi-level machines have generally undergone a PSG bi-level titration in which EPAP (think of that as being similar to the EPR pressure) is set for the pressure level that prevents apneas. In a bi-level titration, EPAP is left there, and the titration proceeds on, increasing the IPAP pressure to knock out residuals snores, hypopneas, etc. EPAP in a bi-level titration is set where it's set for a reason...not only for comfort.

I'm sure there are people for whom EPR is not problematic when they go to inhale using a straight cpap machine with EPR turned on. There are probably some though, that are getting throat closures and less than optimal treatment with EPR because their prescribed pressure was a cpap titration (not a bi-level titration) and they actually need the prescribed cpap pressure to keep the throat open in order to start an inhalation.

If a drop in exhalation pressure sustains that drop throughout the entire exhalation, I agree...it can feel very comfortable. That's the very reason I use the Respironics BiPAP Auto even though straight cpap would treat me fine. Comfortable and soothing appeal to me, too.

However, if I were going to use a straight cpap with EPR enabled, I'd want to set the single pressure the same number of cm's above what the prescribed pressure was as the number of cm's I was going to allow EPR to use for the drop in pressure. Just in case. Effective treatment also appeals to me.

I doubt if most doctors are checking their patients to see if some should have the prescribed pressure raised to compensate for EPR's pressure drop. If the person is not able to draw the next breath in x amount of time due to throat closure at the end of the exhalation, EPR eventually is suspended, the regular pressure is allowed back in, and EPR won't resume until a certain amount of normal breathing has taken place. With some people that might not matter. With others, it could be causing sleep disruptions much of the night. I doubt if most doctors prescribing machines with EPR have even thought about it.

The way C-Flex in the Respironics machines lets the prescribed pressure come in before the exhalation is completely finished and is already keeping the throat open for the next inhalation just may be the better way to give both effective treatment and a degree of exhalation pressure relief, imho. Certainly might be better for the vast majority of people whose doctors will not be paying much attention anyway to how their treatment goes.

rested gal wrote: I think it's a bit of a stretch to say EPR functions exactly like a bi-level machine. I understand what you're talking about as far as the specific 1, 2 or 3 cm's of drop that can be set with EPR, but that's where the similarity ends.

EPR triggers on inspiration as Dave correctly points out. However, that's also essentially what BiLevel does when it triggers on a zero flow or near-zero flow respiratory nadir. And thus that same EPR caveat mentioned by Dave (an inspiratory-based trigger that can potentially under-address apneas) is also maintained by Rapaport and countless other sleep MDs as being a caveat for traditional BiLevel. And that caveat of under-addressing apneas is precisely why BiLevel is quite often titrated with EPAP equal to CPAP (to address apneas that are quite often incipient at the end of expiration).

You can put me down as also viewing EPR as being a true variation of BiLevel (unlike C-Flex, which is not inspiratory-trigger based). But to be fair, there are a few differences between EPR and traditional BiLevel that I am aware of. My take is that the EPR feature differences can be summed up in these three general categories:

1) Automation of IPAP Rise Characteristics- Rise time and rise delay are most often manually set with traditional BiLevel, but are algorithmically maintained by Resmed's EPR,

2) Fixed PS Max of 3 cm- Resmed's EPR is true Bilevel with a fixed 1 cm, 2 cm, or 3 cm spread between IPAP and EPAP; traditional BiLevel allows for a much greater IPAP/EPAP spread than only 3 cm.

3) Safety-based Suspension of BiLevel Operation- Resmed's algorithm will suspend EPR under certain circumstances. I admittedly hope to have a closer look at the algorithm some day. But my guess is that this safety feature likely has to do with the fact that many EPR patients will likely not receive a traditional BiLevel titration in a PSG lab. I very strongly suspect that this ongoing safety feature is precisely how Resmed contends that EPR can be safely used without a dedicated BiLevel titration---or without permanently setting EPAP=CPAP. When BiLevel operation is suspended for the sake of safety/efficacy, then EPAP and IPAP are both temporarily set at that inherently safer (or "caveat avoiding") CPAP level. Again, I hope to take a closer peek at the algorithm some day.

But since EPR maintains its lower EPAP throughout the entire expiratory phase, I too qualify EPR as true BiLevel therapy---and thus potentially with the same caveats as BiLevel that Dave pointed out in his EPR thread. My view is that before discounting EPR as being potentially unsafe, we would need to find out just how well or poorly those caveats mentioned by Dave are addressed by the safety features embedded in the EPR algorithm. However, I strongly suspect that those caveats are addressed adequately by the safety features embedded in the algorithm for the vast majority of patients using EPR. But as with any new biomedical technology, the jury is still out. At least it's no longer sequestered in this case. .