Are tritration studies accurate?

Todzo,
Very good questions. Yup, a sleep study at home for a week would be much better, but even then ....

For us, nothing big affecting results other than being in a strange room without spouse there and of course having to get an assistant's help before going to the bathroom - yuck.

But I wonder if positional data changes - with all those wires on don't we sleep differently with the positions we sleep in as well as how deeply we sleep?

I slept with an oximeter on for the first time last night - just one finger inside a soft rubber "cap" and I woke up several times and didn't sleep as well just because of the extra sensations on that finger. Would I get used to it after a while, sure (not sure I will wear it that often to get used to it). But in a sleep lab with so many things attached and weights of wires and ... Boy, for me that might make a big difference. Would I show up with severe sleep problems when I didn't have them, probably not, but a 10-25% difference, I might buy that.

Interesting info that makes me think no more sleep studies, I can do a better job then they do.

We got the titration study as we were told we needed a new sleep study since we had changed DMEs (moved to a new state) to get a new mask. When we went to the sleep study Dr he said you never had a titration study, we need do that - APAP is good, but a steady number is better.

Well I got a copy of the tritration sleep study. And I also had a copy of the original one we had done. Note: These are not normally offered, you have to ask for them and everyone should, you can just say you need it for your DME/your regular Dr if they ask why, but get it sent to you.

In the original split study, in the 2nd half, pressure started at 4 and was explored up to 8 with notes saying AHIs still seen at 8 but mask leak started and no final determination of what the pressure should be.

Well new Dr that did the titration started at 5 and went only up to 7 (no further), staye at 6 for 2 hours and 7 for 2 hours.
In the morning they said husband reported being awake but not alert (an indicator there was a problem since with his apap he was always alert in the mornings).

Our old machine we couldn't get data from the card anymore (the encore software we had didn't work past XP and stated no intention of changing that so we quit asking and had no way to see the data - see we should have been reading posts here at least every 6 months even if things were going well).
But with the new loaner machine we have set on APAP 5-15, the optimal range was 10/11.

So the Dr wrote a cpap script for 7 and never even explored past that (ran out of sleep time). Seems this sleep study didn't even really try to cover the basic, just spent an hour at each level and then when the morning came said oh, the level we stopped at is a good one (at least better than the ones below it). Argghh. Oh, and our apap, when set as a cpap at pressure 7, now showed that AHIs jumped from about 2 to 9 and of course we reported this to the Dr at the one month followup as a concern. The Dr just said my lab is good those machines are not made to measure AHIs [e.g. your machine is not good, my lab is good].

I wonder how many other people are misdiagnosed and never figure it out, because at 7 is better than no cpap, and if it was their first one they would have believed the Dr saying see this is good. The more I learn about Drs for all areas, the more we have to take our health into our own hands and start out disbelieving anything we are told until we confirm things with research.

From now on, no more sleep studies for us. Too much money and time to use them just to try and find a good Dr (our first one I believe was decent and in 3 years he never wanted to do a titration study and AHIs were about 2.1 which you all said were good at that time - 2008). But this last one, in my opinion was just money and time wasted. From now on, we do our own data and show it to our regular Dr and get him to do any new prescriptions we need. Unless of course we can't optimize things.

We got the apap originally in 2008. I wish I would have checked in here every 6 month or so. I am a data junky, so if I saw the new machines with better software I would have started drooling for one and been asking my insurance company when we could get one and we would have gotten one in 2011 (instead of now). Then we would have been better informed.

After this experience, I highly recommend people get an apap with good software and do their own tracking. If needed, get an oximeter (now the prices are down to just over $100) and use that data to confirm you are ok at your cpap setting or to prove you need an apap.

CpapWife wrote:Todzo,
Very good questions. Yup, a sleep study at home for a week would be much better, but even then ....

For us, nothing big affecting results other than being in a strange room without spouse there and of course having to get an assistant's help before going to the bathroom - yuck.

But I wonder if positional data changes - with all those wires on don't we sleep differently with the positions we sleep in as well as how deeply we sleep?

I slept with an oximeter on for the first time last night - just one finger inside a soft rubber "cap" and I woke up several times and didn't sleep as well just because of the extra sensations on that finger. Would I get used to it after a while, sure (not sure I will wear it that often to get used to it). But in a sleep lab with so many things attached and weights of wires and ... Boy, for me that might make a big difference. Would I show up with severe sleep problems when I didn't have them, probably not, but a 10-25% difference, I might buy that.

I believe that CPAP fails most of the time due to several things currently built into the system:

1. A test made in a lab done for a single night (or less - and often with drugs to facilitate sleep in the strange place) using outdated bulky non-wireless equipment. I do not believe that using such a test can show what is happening in the persons bed as they go through life.

2. Titration done, again, in a lab for a single night (often less). Same basic reasons that the sleep test fails to represent what is going on in the home over time.

3. An inexcusable lack of due diligence regarding the monitoring the persons therapy. I have found that you really do NEED to check your data a couple of times a week. I manage my therapy by many lifestyle controls and this makes my need to change pressure a rare thing. However, if I did not look at how things were going it would be somewhat like a person who has diabetes not checking their blood sugar levels on a regular basis. I have found that there are many things that I can do to deal with problems in my therapy that keep not only my AHI down but also deal with micro events (apneas and other events too short to be counted) and breathing stability issues (not scored as Respiratory Effort Related Arousals but the kind of activity that would tend to bring them about). As people using CPAP we need the several times a week feedback to keep our therapy on track.

4. Lack of a basic understanding of the breathing stability issues common in sleep disordered breathing and exacerbated by the constant pressures of a CPAP machine.

I think you are very wise to rig to monitor your own data. Consider it a slow process to come to understand the data. I believe it will be well worth your time.

I also have found audio recordings of the night useful to see what some events really are and/or what brought them about. For example some events turned out to be brought about by noisy argumentative neighbors. They never woke me up that I noticed. It did bring events into the picture. It was easily resolved initially by ear plugs and eventually be the neighbors moving out.

I hope we find the best solutions!

Todzo

I'm going in for my third study tomorrow evening ...

For just finding the right pressure ... I agree an APAP is fine ...

I also agree that the night of a sleep study in a lab/clinic is far from a normal nights sleep!

One of my problems is centrals recorded on my APAP ... they (If they are looking) can tell if I am rolling over at that moment ... what stage of sleep I am in ... and determine if it really is a central, or something else. (would the zeo do the same thing)

My second study I ended up running the wires for my legs inside of the waist band of my pants, and down inside, as the first time I got the wires tangles up in my toes, since I move around quite a bit ... I also asked them to not tape on the O2 probe on my finger so tight (I still had an impression from it more than an hour later) it hurt quite abit

I wonder if the sleep lab techs have ever been a victim of a sleep study, should be a requirement!

I took some sleep drugs on my second one to help me sleep ... now my Dr (different one than I had then) say I should not, as it will give a possible false reading of my "normal" nights sleep!

Yes, a lot to track down. Getting back on apap is doing good AHI level again.

But we are finding oxygen saturation is still low for some reason.

Yup, we have a watch and finger probe oximeter, which might have more errors because of the wire probe.
But it also might be positional, in the lab sleep on right side o2 dropped a little.
Position at home I would imagine is very different than position at lab with all the massive wires.

But great knowledge if O2 is needed to be added.

central apnea, yup I would be in a lab, hard to track those at home.

I agree no drugs unless you do them all the time at home. And the idea, make it so we can sleep without drugs.

As I have positional apneas as well: I think they rig the game, by having you sleep flat on your back.

Talking with Sleep Techs I find they are NOT surprised when I say I have problems sleep flat on my back..I can tell they KNOW about it...

My apneas are sky high on my back and can often run to zero if I stay on my side....

I guess I was very lucky that I had such bad complex apneas, (CPAP make Centrals..) that I ended up with a ASV machine, which is nearly automatic...

And thanks to sleepyhead program was able to figure out things for myself after wasting two sleep studies....and nearly two months..

So I am telling everyone to check other sleeping positions.. don't take this laying down (pun intended)

Rich