Do I find another doc...?

[khemicals]

Hello,

So I just hit my 8 month mark on APAP treatment. I am currently using the following settings with the results below (1 month average):

pressure settings: 10.6 - 20 cm
EPR Setting: 1cm Fulltime
95% leak percentile: 0.0
95% pressure: 10.8cm
Max pressure: 11.2cm
Average Use: 7h41m
AHI Average: 4.4 (4.1 HI, .3AI)
Compliance: 100%

Most folks on the boards note they have a major aha moment, when they feel like all is better, they are awake and part of the non-zombie world of pre-treatment (or perhaps that's just how I see it reading through the posts). I haven't had said aha moment.

I have noted the following changes:

* I almost never need to use the restroom in the middle of the night (pre treatment this was only once or twice a night, so not the excessive counts some see)
* My wife says I no longer snore
* I feel very marginally better I think, perhaps not at all

My Epworth Sleepiness Scores were low before treatment and remain low. My doctor indicates she thinks treatment is working despite me feeling otherwise (purely based on the Epworth score from what I can tell). But, I think my ESS is tempered by my past and continued massive self-medication with caffeine (which I avoid after 6PM or so). The odds of me falling asleep are pretty low so I score it accordingly and appear on paper to be fixed.

Given how I feel I asked my doc if I should have another sleep study, she said no for now, see you in a year and we'll talk more then. I fear I am just waiting another 10 months to do another PSG when perhaps another makes more sense now.

My initial PSG indicated severe OSA with only very minor o2 sturation drop, but the test conditions/results were noted as poor given I didn't sleep much during the test and apparently was in a sub-optimal sleeping positing for the test. I really would prefer to not do another in-office PSG -- are there any in-home PSG style tests that could evaluate independently how well my APAP treatment is really working?

So I guess I am wondering -- How do I know if this is really working? I am committed to treatment and getting myself feeling better. I don't think I feel better or as good as I possibly can yet. I think I have taken the right steps thus far.

Do I wait more? Talk to my doc again, or find another doctor? Or do you have some entirely differently suggestion I haven't thought of? I am not particularly thrilled with my current sleep doc, but not so turned off to change for any one specific reason.

Thank you,

David

[LSAT]

I'm certainly not an expert on this, but, your numbers indicate that you are doing very well. Why worry about another sleep study.....your machine is giving you the same information that a sleep study would. In my opinion....once you have a good titration and the machine is doing what it is supposed to, a sleep doctor is unnecessary unless you are having problems.....YOU ARE NOT!

[DreamDiver]

pressure settings: 10.6 - 20 cm
EPR Setting: 1cm Fulltime
95% leak percentile: 0.0
95% pressure: 10.8cm
Max pressure: 11.2cm
Average Use: 7h41m
AHI Average: 4.4 (4.1 HI, .3AI)
Compliance: 100%

...
Do I wait more? Talk to my doc again, or find another doctor? Or do you have some entirely differently suggestion I haven't thought of? I am not particularly thrilled with my current sleep doc, but not so turned off to change for any one specific reason.

While an AHI of 4.4 is below the required 5.0 to show that therapy is working, according to some standard deep in the bowels of medicare, many of us don't feel entirely rested until it gets below 2.0. It looks like you've plateaued above that. There could be a number of reasons.

You could either take matters into your own hands and titrate yourself, or you could go for another sleep study. You have an Autoset II and the software. In the same situation, others - like me - have self-titrated because the sleep-doctor world is more satisfied with numbers from a machine than the Epworth scale.

Under the same circumstances (myself not being a professional, but taking things into my own hands) I would self titrate. With an auto, I started by changing the minimum pressure one cm H20 up or down and check out my AHI over the course of the next few days. Here's a thread that talks about self-titration. The idea is to find the pressure sweet spot for your minimum pressure over the course of a few weeks. For instance, once I realized I was best between 10 and 11 cm H20, I started titrating at 10.2, then 10.4, 10.6, etc. I know it sounds tedious, but you're not going anywhere at night, and in a few weeks you'll have at least an understanding of what minimum pressure works best for you. Then you can start working on your max pressure the same way - usually lowering it if it's as high as 20cm. Some people don't ever change the max, but others find reducing it helps further lock in a good target therapy pressure zone. Some find in the end that they're better setting the machine to a straight CPAP setting. Others find a range of pressures in auto mode is better. It really depends on what works best for you. The beauty of owning an auto is that when you lose weight, or change medications, you can re-titrate again if your AHI wanders from your preferred target range.

Of course, if all this is scary or confusing - and it is for some of us - there is no shame in that. Get an opinion from a second sleep doc and get re-titrated professionally.

[newhosehead]

* I feel very marginally better I think, perhaps not at all
David

With no disrepect intended to LSAT, I am going to disagree a bit. Yes, you do perceive that you have a problem and it is in the quote above. I felt compelled to post because I can relate to what you are saying. It is just about 4 months for me and while I do see improvement, I do not feel the way I would like to.

I have read this forum like crazy and tried to take everything into account. My numbers are good also. I am a normally slender woman who has gained 20 lbs in the past two years during what I now know must have been the time this was all worsening. So I took some good advice I saw on this forum and started trying to lose that weight. I find myself incredibly exercise intolerant or should I just say completely wiped out by exercise, NOT the normal tired, I just exercised feeling that I remember. Do I try to take into account that this takes time? Do I try to to take into account that I am now in my late 50's and maybe this is how it feels? Yes and Yes. And yet I can understand your question.

I too wonder about going back to medical world (ughhh) but I remember how many things were tested for in the search that ultimately brought me here, and wonder if I just need to keep at for awhile longer. David, I apologize, you didn't need to hear my whine with cheese, I just wanted you to know that I get it. You don't feel better, or if you do, it is only marginal. Hard to say when it is advisable to go back to a doctor or get a new one. I do, however, get it. Good luck.

Jeanette

[Wulfman]

Have you tried straight pressure (CPAP mode)?

If not, I would suggest (based on your numbers) a fixed pressure of 11 cm. (to start with)

It's no surprise that your 95% pressure is not much higher than your minimum pressure setting. The algorithm used in the S8 and previous generations of ResMed Autos will not pursue apneas beyond the pressure of 10 cm. unless they're preceded by snores or flow limitations. You also may have enough pressure changes during the night that it's subconsciously disturbing your sleep......and you're not feeling well-rested.


Den

[Gerald]

David.....

I agree with DreamDiver.......and I think what he is suggesting is very realistic.

To answer your question, "How do I know if this is working?", I have a suggestion: Rather than go back for another sleep study (a waste of time and money...in my opinion), I suggest that you purchase a recording Oximeter....to check your O2 levels during the night. Spend your money on a tool that you can use over and over....for years.

Apnea is simply "suffocation" that causes low O2 levels in your bloodstream. Your Oximeter will check the performance of your CPAP machine by letting you know if the CPAP machine is doing its job by keeping your airway open...so that your O2 levels stay at or above 93% all night.

I can recommend the SPO-7500 Oximeter and the software that comes with it. I purchased mine from turnermedical.com and I'd buy from them again. A highly recommended tool.

Finally, my honey and I found that our AHI scores had to stay below AHI 2.5 or we weren't getting enough O2.

[DreamDiver]

I agree with Gerald's oximetry suggestions. There are lots of inexpensive oximeters available out there today. I also agree with Wulfman. If it were me, I'd pump the minimum pressure to 11 (or go with a fixed CPAP setting at 11) as my first self-titration level to see if I could knock out some of those hypopneas.

[khemicals]

Thank you to everyone for your good suggestions.

For now, I think I'll switch over to CPAP mode and start titrating. I've started trying to do that in APAP mode and perhaps that's part of the trouble. Given my numbers stay mostly static pressure wise, I see no need to use fulltime APAP. I guess I'll be a bit more vigilant and collect better numbers into a spreadsheet on a nightly basis and then see where things go. Given a doctor's office titration is done all in one night -- I think I'll titrate 11cm and up, one pressure a day while in what I'll call optimal conditions to get a baseline range to something reasonable. Then I can narrow it down from there spending more time at the various pressures in the 'optimal range'. I'll probably need to work at some pressures longer than a day since I know I am somewhat sensitive to a large pressure change (perhaps APAP really was bothering me). I think I can essentially rule out 9 and below based on previous results. Should I find this initial speed method not work, I'll do the 1cm increments for a week or so at a time.

As for the oximeter stats, given my doc didn't see much of a drop in my PSG, I think those probably aren't too valuable for my case. However, in the future I'll grab one to see how things are going and perhaps try to correlate the o2 data against pressure. I am pretty sure there has to be an o2 sensor that can talk to the APAP so the data charts out together which could be of some use.

Does anyone know if this machine will track central events just so I know if the pressure gets too high (not independently -- it clearly has no indicator of a central)? Do those get recorded in the AI or HI part of the value (AI I presume)?

And for anyone else out there who is reading this thread and perhaps thinking of giving up for not feeling better, know that I have faith that I will figure this out and feel better. You can and will too.

[kteague]

Howdy neighbor. It may be a bit premature to change doctors. There are some in our area you really don't want to end up with. I'd give this a little more time and see how she responds to any further reports from you of any continuing problems.

If you are able to reduce your AHI further and maintain it with some degree of consistency for a few weeks but still feel the same, I think you should report back to your doctor. By the way, slow and steady on the increases is my recommendation.

How long into your treatment was it before you got any mask issues worked out, the equipment felt familiar enough to sleep well, and you began getting the numbers you're seeing now? It's less disheartening if we don't expect too much during the adjustment phase, and then it doesn't seem like we've been at it so long with unmet expectations. Are you fairly consistently getting enough sleep?

Did either of your reports record any limb movements, or does your wife report you kicking or jerking much during sleep?
Also, have you had a medical workup for things like diabetes, anemia, thyroid dysfunction, heart function - things that can make one feel tired? Hope things begin to improve for you.

[brain_cloud]

I'll disagree with some of the other posts by saying I think in your case another titration study would probably be extremely valuable. Particularly if your original titration pressure turns out to be optimal and there are very few apneas or other respiratory events. For either your sleep architecture will be normal (in which case you are probably screwed), or it will be messed up for some reason other than apneas that only a sleep study can bring to light.

[Wulfman]

Thank you to everyone for your good suggestions.

For now, I think I'll switch over to CPAP mode and start titrating. I've started trying to do that in APAP mode and perhaps that's part of the trouble. Given my numbers stay mostly static pressure wise, I see no need to use fulltime APAP. I guess I'll be a bit more vigilant and collect better numbers into a spreadsheet on a nightly basis and then see where things go. Given a doctor's office titration is done all in one night -- I think I'll titrate 11cm and up, one pressure a day while in what I'll call optimal conditions to get a baseline range to something reasonable. Then I can narrow it down from there spending more time at the various pressures in the 'optimal range'. I'll probably need to work at some pressures longer than a day since I know I am somewhat sensitive to a large pressure change (perhaps APAP really was bothering me). I think I can essentially rule out 9 and below based on previous results. Should I find this initial speed method not work, I'll do the 1cm increments for a week or so at a time.

As for the oximeter stats, given my doc didn't see much of a drop in my PSG, I think those probably aren't too valuable for my case. However, in the future I'll grab one to see how things are going and perhaps try to correlate the o2 data against pressure. I am pretty sure there has to be an o2 sensor that can talk to the APAP so the data charts out together which could be of some use.

Does anyone know if this machine will track central events just so I know if the pressure gets too high (not independently -- it clearly has no indicator of a central)? Do those get recorded in the AI or HI part of the value (AI I presume)?

And for anyone else out there who is reading this thread and perhaps thinking of giving up for not feeling better, know that I have faith that I will figure this out and feel better. You can and will too.

Be sure to give each pressure setting at least three nights......five might even be better. Obviously, we don't sleep the same every night, so you want to give yourself some time to get used to the pressure changes.

Were there any Centrals noted on your sleep study? They would essentially appear in the reports like an Obstructive apnea.
However, as low as your AI number is in APAP mode, I doubt that Centrals will be an issue with you.


Den

[Wulfman]

I'll disagree with some of the other posts by saying I think in your case another titration study would probably be extremely valuable. Particularly if your original titration pressure turns out to be optimal and there are very few apneas or other respiratory events. For either your sleep architecture will be normal (in which case you are probably screwed), or it will be messed up for some reason other than apneas that only a sleep study can bring to light.

He's got alot more options that haven't been tried yet. No need in shelling out significantly more money too soon.


Den

[brain_cloud]

I'll disagree with some of the other posts by saying I think in your case another titration study would probably be extremely valuable. Particularly if your original titration pressure turns out to be optimal and there are very few apneas or other respiratory events. For either your sleep architecture will be normal (in which case you are probably screwed), or it will be messed up for some reason other than apneas that only a sleep study can bring to light.

He's got alot more options that haven't been tried yet. No need in shelling out significantly more money too soon.


Den

His pressure ranges between 10.6 to 11.2 (with 95% between 10.6 to 10.8 ). If those huge .2 jumps in pressure are waking him up, dudes got to be the most sensitive sleeper since the Princess and the Pea.

His AI is .3 It's not going to get any better than that and if it did, it wouldn't make the difference between feeling bad and feeling good. Or again, he's the Princess and the Pea. Which he probably is not.

He can dick around for awhile. It won't hurt anything. At some point he gets another sleep study and maybe learns something significant.

[Wulfman]

I'll disagree with some of the other posts by saying I think in your case another titration study would probably be extremely valuable. Particularly if your original titration pressure turns out to be optimal and there are very few apneas or other respiratory events. For either your sleep architecture will be normal (in which case you are probably screwed), or it will be messed up for some reason other than apneas that only a sleep study can bring to light.

He's got alot more options that haven't been tried yet. No need in shelling out significantly more money too soon.


Den

His pressure ranges between 10.6 to 11.2 (with 95% between 10.6 to 10.8 ). If those huge .2 jumps in pressure are waking him up, dudes got to be the most sensitive sleeper since the Princess and the Pea.

His AI is .3 It's not going to get any better than that and if it did, it wouldn't make the difference between feeling bad and feeling good. Or again, he's the Princess and the Pea. Which he probably is not.

He can dick around for awhile. It won't hurt anything. At some point he gets another sleep study and maybe learns something significant.

Like the sleep study you just had? Would you like to recommend your sleep lab to him? What did YOU learn?

By the way, those were his 30 day (night) averages.


Den

[brain_cloud]

Like the sleep study you just had? Would you like to recommend your sleep lab to him? What did YOU learn?

I learned that my original titration was way the hell off, by at least 4cm, maybe more. I learned that I had alot of arousals due to leg movements. I learned that I didn't have any REM sleep. When I get the full report, I'll probably learn that I didn't have any stage 3-4 slow wave sleep. I think that is significant knowledge.