My melodrama

[Janknitz]

That's a great sign. It may still take some time to pin down the ideal pressure or range of pressures for long term optimal treatment, but you're on your way. IMHO, the pressure titrated from one night under very artificial sleeping conditions may not reflect your true needs. With data, you can titrate yourself at home.

Your doctor may not be happy about this, but it's YOUR body and YOUR sleep.

[BeadyEl]

1st night:
Hypopnea: 4.76
Clear Airway: 7.32
(not bothering to note categories with a zero count...)

2nd night:
Hypopnea: 3.02
Apnea: 0.23
Clear Airway: 0.23
(Bear in mind: I slept less than an hour during this 4-hour-and-change period.)

3rd Night:
Hypopnea: 0.45
Obstructive: 0.15
Clear Airway: 0.15

And YES, I am going to keep it at level 9 for a while.
Can't hope for a lot better than 0.75...

[djhall]

Fantastic news! That changes the way everything looks, doesn't it? Now you KNOW you can mange a balance that will allow you to stay asleep and still get effective treatment now... not just weeks from now if/when you can tolerate 17.

[BeadyEl]

Very much. Now all I have to worry about is a my doctors having a snit-fit - but now I even have hard data to back up my actions.

[Janknitz]

IF you even really NEED a pressure of 17!

[kaiasgram]

1st night:
Hypopnea: 4.76
Clear Airway: 7.32
(not bothering to note categories with a zero count...)

2nd night:
Hypopnea: 3.02
Apnea: 0.23
Clear Airway: 0.23
(Bear in mind: I slept less than an hour during this 4-hour-and-change period.)

3rd Night:
Hypopnea: 0.45
Obstructive: 0.15
Clear Airway: 0.15

And YES, I am going to keep it at level 9 for a while.
Can't hope for a lot better than 0.75...

Agree. And your machine wouldn't be resolving those Clear Airways (like on night 1) with more pressure anyway. It's even possible that 17cm was actually triggering some of those CA's. I know you took meds on night 1 and didn't take anything last night so there's more than one variable in the mix, but you'll know more over time.

All good news.

[robysue]

Amazing what the power of data and a good night's sleep do, isn't it?

Keep the pressure at 9cm for a week and see if the AHI stays nice and low. If it does, don't bother increasing the pressure up to 10. If the AHI does creep or skyrocket back up above 5, then in a week increase the pressure to 9.5 or 10 and leave it there for a week and repeat.

With some patience you'll be able to find out what your real pressure needs are.

[Todzo]

A little over ten years ago I had my first sleep study. The results were: no significant sleep apnea.

I believe that it is very likely that the amount of measurable sleep apnea in a person varies each night such that it is undetectable many nights at least in the early days.

As well the “Golden Standard” test cannot actually measure how you sleep in your own home in your own bed since it is administered far away from there in a very public environment in a very invasive manner. After spending all that money and expense you still have no idea how you sleep in your own home in your own bed night after night. You do however know how you sleep during one or perhaps a couple of very expensive night(s) in a public place with all kinds of wires attached and your future depending upon the results.

However, the reason I had the study done was because I was suffering from insomnia, and it was ruining my life . . . No, this insomnia would wait until I was just dozing off, peaceful and happy – and then suddenly I would snap awake, my pulse racing. For no apparent reason. Over and over and over and over . . . All night . . . Night after night... Then I got my home machine – and discovered that, far from enriching my sleep, it's stealing it away. In fact, it prods me awake nearly every time my breathing rhythm changes (you know, like you do when you're first dozing off?) Other times it blows my mouth open – again, usually just moments after I doze off.

I have come to believe that CPAP intolerance for those with insomnia is strongly related to three things. High respiratory control loop gain, low arousal threshold, and expiratory pressure intolerance (EPI).

In a recent study it was determined that some 36% of those with Obstructive Sleep Apnea (OSA) have high respiratory control loop gain[1]. They tend to overshoot when trying to correct for too little O2 or too much CO2 – or the vice versa of each.

This means that there will be inappropriate air hunger which translates in to greatly increased respiratory effort which results in excessive arousals.

They also determined that some 37% had a low arousal threshold. I am suspicious that this is why both you and I have trouble dealing with the crazy “clear airway sensing / pacing” air pressure pulses from our “modern” CPAP machines. With those added to the already high levels of noise and vibration shooting up the tube to our masks it is a wonder anyone can get any sleep at all.

As well getting used to CPAP can be complicated by expiratory pressure intolerance (EPI)”

“During expiration, the discomfort from standard pressurized airflow seems to trigger an anxiety response that the insomnia patient cannot overcome; whereas with the use of auto-bilevel devices, including ASV, the patient’s comfort level is noticeably higher.

In these cases, the subjective and objective finding is expiratory pressure intolerance (EPI).”[2]

I have been watching the discussion concerning how Expiratory Pressure Relief (EPR) or BiPap often help those who have problems getting used to CPAP but recently I had an experience which moved this from theory to understanding. In my efforts to lessen the affects of the crazy “clear airway sensing / pacing” air pressure pulses from my machine I plumbed into the circuit some compressible air space. Well that does indeed slow the rise/fall times of the pressure pulses but it also lessens the effects of my expriatory air meeting the CPAP fan recently spun up to facilitate inspiration. The feel is very much more like breathing into normal air. It is so nice! The vibration and noise in the tube are also considerably less as well.

...So – any cause for hope?

Yes. Today I learned how to access the secret menu that lets me turn down the pressure. It's the only thing I've heard or read that has calmed me in the least. Maybe I can still salvage the situation. Just find a place where the air doesn't quite blow my doors off. I'll do what I can to adjust - with a goal of returning to a setting of 17 - but damn it, during the adjustment period the infernal machine can bloody well meet me halfway for a while. Plus, it's Friday – tomorrow I can sleep in as much as I want.

So the titration done in the lab (over a single night or half night at great expense and inconvenience with considerable financial and emotional pressure) did not work too well? No surprise here!

My last in home “titration” lasted over 60 days and found a pressure which worked for many months. Only a few small changes have been made since. I believe in using lifestyle to manage how the machine works for me but will change pressure if that is not enough.

Also, I've requested a chin strap, which is on its way. Once I have that in hand, I'll try the higher settings again.

And if those don't work, a conversation like this may be ahead:

“So Doc, I guess there's something we should have discussed earlier: any treatment plan that hinges me 'toughing out' a wholly unpredictable number of sleepless nights – is just plain out of the question. For most people it'd be an inconvenience, for me it's a first-class ticket to gibbering madness. I literally can't take it.

So, what else you got?”

Doctors have people beating down the doors to get any help they can. I would not place my expectations from doctors very high. They indeed do not have to try.

[1] Danny J. Eckert, David P. White, Amy S. Jordan, Atul Malhotra, and Andrew Wellman "Defining Phenotypic Causes of Obstructive Sleep Apnea. Identification of Novel Therapeutic Targets", American Journal of Respiratory and Critical Care Medicine, Vol. 188, No. 8 (2013), pp. 996-1004. doi: 10.1164/rccm.201303-0448OC

[2] http://www.sleepreviewmag.com/2014/01/a ... a-and-sdb/

[BeadyEl]

I've had the CPAP now for 8 nights. Been at 9 (down from 17) for 6 of those.

Sleep has mostly been very good, and AHI low - but it's inching up. It was a remarkable 0.75 for my first night (at 9 pressure) but last night it was 3.22. Still - not too bad.

Perhaps the most important development - the damn thing doesn't scare me so much any more...

I figure soon I'll try bumping it up from 9 - start small, go to 9.5. The supplier who gave me the CPAP are supposedly sending me a chin strap - but it has yet to arrive. Perhaps it'll help me NOT swallow as much air. Sigh.

[knothead]

BDI, sounds like u got the tiger by the tail and doing well. I noticed that u live in Ohio...CPAP hell...lol. I think your gonna end up in CPAP heaven cause your gonna love the sleep and the machine. I went through everything you have but didn't know about this site, just took meds and fought with it(mask). Off meds now and went to an AUTO S9 which I love. It got to where my straight cpap set at 10 was not working as well as when I started. I borrowed a friends S9 Auto, reset pressures and walla, back in dream land. Good for you for sticking with it...

[kaiasgram]

I've had the CPAP now for 8 nights. Been at 9 (down from 17) for 6 of those.

Sleep has mostly been very good, and AHI low - but it's inching up. It was a remarkable 0.75 for my first night (at 9 pressure) but last night it was 3.22. Still - not too bad.

Perhaps the most important development - the damn thing doesn't scare me so much any more...

I figure soon I'll try bumping it up from 9 - start small, go to 9.5. The supplier who gave me the CPAP are supposedly sending me a chin strap - but it has yet to arrive. Perhaps it'll help me NOT swallow as much air. Sigh.

No kidding, conquering the fear factor is a MAJOR victory.

Honestly, though, don't be in too much of a rush to start increasing the pressure. 3.22 is still considered successful treatment so if you're more relaxed and your sleep has been very good, there's no compelling reason to push yourself to higher pressures now. And again, if it's just "clear airway" flags popping up to raise your reported AHI then increasing your pressure will not help that anyway.

Given what you're telling us I would encourage you to just let yourself sleep well for a while, now that you're feeling much more at peace with the whole operation and you're sleeping well overall. Maybe wait till you've got the chinstrap and used it for a bit, because that may bring about further improvement all by itself.

[djhall]

I've had the CPAP now for 8 nights. Been at 9 (down from 17) for 6 of those.

Sleep has mostly been very good, and AHI low - but it's inching up. It was a remarkable 0.75 for my first night (at 9 pressure) but last night it was 3.22. Still - not too bad.

Perhaps the most important development - the damn thing doesn't scare me so much any more...

I figure soon I'll try bumping it up from 9 - start small, go to 9.5. The supplier who gave me the CPAP are supposedly sending me a chin strap - but it has yet to arrive. Perhaps it'll help me NOT swallow as much air. Sigh.

I am so happy for you! You've made the transition to being the driver instead of just a passenger... you may get frustrated sometimes, but not hopeless.

3.22 is not bad, especially if it is a single night (some nights are twice as bad as the rest for no apparent reason). If your AHI was largely Obstructive and you weren't leaking at those times (open mouth) then you might bump to 9.5 IF it doesn't impact your sleep quality (exhalation difficulty, discomfort from swallowing air)! At this point sleep quality is more important than reducing a 3 to a 2. You'll have months to tweak pressure... right now, as long as the treatment is reasonably effective, the main battles are sleeping comfortably, not leaking, not getting so much swallowed air that is causes distress, and not getting frustrated.

[Pugsy]

If you are having aerophagia issues....I wouldn't be increasing the pressure unless you start seeing a lot more obstructive apnea or hyponeas. There is no real need even with an AHI of 3.22 that was all OAs.

Remember that you need to also evaluate the event category break down. We don't treat centrals with pressure increases with your machine...so if half that 3.22 was centrals...even less need to increase the pressure.

So how much was the Central index, the Obstructive Apnea index and the hyponea index in that AHI of 3.22 (which is still acceptable anyway)?

[BeadyEl]

Okay, I'm at a bit over 2 weeks now. I'm doing pretty well at 9.4, sleeping well most nights with only a slightly extended interval before sleeping.

It would have been hard to believe two weeks ago, but now the mask and its air flow DON'T command my full attention while it's running. Who'da thunk!

My follow up appt with my doctor is coming on Tuesday 4/1

My AHI has been pretty decent - consistently below 3 though occasionally a little above. Is zero really a sensible goal?

I'm going to try to include below a recent screen shot of my CPAP data. Few events, you'll see, but my Flow Limitation graph is pretty active.

Any feedback is appreciated.

[nanwilson]

Beady - your goal should be 5 not zero. Some never get a zero, some occasionally..... if someone tells you they get a zero every night........ there's something wrong with their machine. Happy to hear you are adapting to the therapy.. keep it up you will hit 5 or less soon.