Cpap doesn't work. Maybe bipap? EDIT: I posted my studies

[Guso]

Hi, I'm Gus, a new user. I'm from Spain. I was diagnosed with sleep apnea and now I use cpap (I already suspected it before, but it took a long way to get diagnosed). I have been using the machine for four months and I am still memoryless and energyless. I'm young and mostly thin,and I'm somewhat fit. When I was in the titration (my second study) I was amazed how easy it was to breathe. When the machine arrived (lended to me by the private insurance) it was a letdown, it wasn't easy to breathe anymore, later I learned that the titration machine had EPR (expiratory pressure relief) and my machine is just a basic cpap. (a respironics ds100 I think). Sometimes I have awaken while breathing very shallow and slow, and I have a tendecy to hold the breath so I suspect I have another type of apnea. Yet my first study (without cpap) concluded I have obstructive apnea/hypoapnea and that I need cpap. Reviewing the first study I find little central apneas but what looks like an import number of mixed apneas to me.(more mixed apneas than obstructive apneas). Yet it was an awful night since I had a cough or something and I had my nose blocked frequently and a breathing sensor in my nose made difficult to blow it.
The second study (the titration) show that I had very few apneas, almost all of the obstructive type.
Since I was pondering to buy my own machine, first I though a respironics ds510 auto with heated humidifier had everything I need, incluing c-flex (the equivalent of EPR).
But now I suspect I have another kind of apnea (maybe mixed or central or whatever) and maybe a bipap or sv would be the better treatment. Since EPR or c-flex is somewhat similar to a bipap machine, the fact that they used EPR in the titration HAS MAYBE HIDDEN the other type of apneas in the study.
So now buying a machine which expiratory pressure fuction is just designed for comfort (ds510) instead of treating the condition seems wrong to me.
It would be better to buy a bipap/sv machine which the expiratory pressure fuction is designed to treat the apnea. But I would need a study that I do not have. What should I do?

I use the machine almost every night but I took off the mask unconsciously.
Causes (when I can remember the cause): I feel short of breath,I can't breathe,leaks, I expel air though my mouth (nasal mask) , bad feeling in my lower teeth (with full face mask).
The machine reads averages of 2:00/2:42 hours, AHI=10/8, LPM=52/56.
for 30 and 7 (days I think). I changed recently to a full face mask. I know my compliance is bad, but I feel is because it doesn't help me to breathe.

EDIT: Here is a photobucket album with the two studies in it. It is the easiest way to watch them ONLINE. http://s843.photobucket.com/albums/zz360/lokjhojyf/

EDIT: Here are my studies: http://www.megaupload.com/?d=1H3U9GN1 to download and watch them OFFLINE

EDIT: Some people can get confused with the megaupload link. Check this video to learn how to use it:
https://www.youtube.com/watch?v=sEI0klP8QXM
The looks of the site have changed a bit but the steps are the same.
Also the file is in .rar format, the files can get extracted from it with Winrar a popular a free app.

[Julie]

Hi, I wonder if you can post a night's actual graph, or the summary of your study here. It could help the experts sort out what's happening, though it's nice that you have some idea on your own.

[Wulfman]

Hi Gus.

It would really help if you'd list all of the settings you're using in your APAP (and mask). It could very well be a matter of trying different settings.......like pressures, Flex settings, humidity settings, etc., etc.


Den

[Goofproof]

With those numbers it's plain to see you are going untreated. You seem to have more complaints than you can handle, enough to sink a "Tanker" in DeNile. Getting a better machine one that records full data, APAP prefered, as it can be used as CPAP, if needed. You also need the software to read the data.

With that leak rate you aren't getting treatment, and not using it all night also. You rare going to have to live with a FF Mask, that has a leak rate under 38 LPM, and make it work, or use a nasal mask and tape your mouth. Then you must keep the mask on all night. Making up your mind you are going to make this treatment work is most of the battle. Mind Over Matter, If you can't control your mind, it's hard to succeed at anything. Jim

What pressure is your machine set for, I have always not preferred crutches, so I never used a ramp.

[Guso]

Hi again , sorry for the delay, but now I have a new machine; a respironics autocpap with a-flex/c-flex. Well posting the graphs of my study would take many photos, I would have to remove the staples since they hide useful info. I don't know if it would be useful, maybe I better post just the numeric results.

Well: New machine, (this time with c-flex). I'm glad I have didn't buy this model since it doesn't work too. I have raised the pressure from 8 (titrated) to 12 with c-flex setting at max. This combination is the one that I feel works the best as a "breathing amplifier" which is what I'm searching for. Anyway the machine reacts too slow to my breathing, and more important the expiratory relief is not enough, this c-flex a-flex thing doesn't feel as good as the titration machine.
BUT nonetheless I have been able to spend most of the night with the mask on. With the old machine I took it out way sooner.
Well I have read in another thread that a 25 lpm leak is too high and I have something like 55/60. My mask manual says with 50lpm pressure drops 0.4, and it would take 100 lpm for the pressure to drop just one point. This is to little to make a difference, and anyway I have experimented with various pressures to no effect. I'm standing better the full face mask.

I catch myself stoping breathing for "laziness" when I'm half asleep.
I feel I need a bipap, and the people who made the study missed it. They shouldn't have activated the EPR option.
Well since bipap machines are expensive I'm afraid to buy one and find that I don't stand it.
Since I felt that breathing deeply with the titration machine was effortless ("breathing amplifier"), now I'm thinking to buy the same model they used, even if it is not a bipap. The model is a resmed autoset spirit II.


Where can I buy a resmed autoset spirit II at a good price? (with heated humidifier)

Is there a cheaper version of this machine with the same expiratory relief characteristics?

By the way: machine respironics cpap auto with heated humidifier. c-flex a-flex
mask: comfort full 2 size M

[Julie]

Hi, you can't just put yourself on Bipap (apart from the fact it's a lot more expensive), but I think you need to first work at things with the machine you have now as it might not be set up correctly - it's highly unlikely the sleep study people 'missed' something like that. It's not so much the machine I think as possibly other problems. What is your average AHI (apnea-hypopnea index)? That's the main thing you wan to check for in the morning (or weekly if that's what your machine shows). If it's below 5, and you don't feel badly during the day, you're doing pretty well for a beginner, but if it's high, and you don't feel rested at all, then changes should be looked at, but one at a time so you'll be sure which problem is which. Feeling like you forget to breathe when you're awake is common - don't worry about that.

[kteague]

Guso, glad things are better even if not good. I'll leave technical replies to those who are qualified. I would like to suggest that you pace yourself and not rush into machine changes. For one thing, it may be unnecessary. For another, take some time to discern which machine you REALLY need, as getting one is a big decision, and expense, and hassle. Over time watch your data and look for trends. If we make changes every time we have a rough night, for some that could be a roller coaster ride, as so many things can affect our sleep, even our apnea. Things like meds, what we ate when, alcohol consumption, position we slept in, congestion, etc. Be methodical as you move forward, building a framework that will support your next steps. In my opinion, mastering leaks from either the mask or mouth should be accomplished first. If you don't get that right, you're likely to base decisions on flawed presumptions. Then see if your nightly data begins to reveal a pattern of problems. Maybe you would do better with a bilevel. Would just hate to see you make that leap on a maybe.

[jdm2857]

Do you live in Spain now? Does one need a prescription to purchase CPAPS/APAPs/BiPaps there?

Was the titration machine a ResMed? Newer ResMed have EasyBreathe technology built into the blower itself. It makes breathing feel more natural even without EPR. I'm thinking that it is unlikely that EPR was on during a titration because it varies the pressure between inspiration and expiration and that might affect the results of the titration.

[Guso]

What is your average AHI (apnea-hypopnea index)? That's the main thing you wan to check for in the morning (or weekly if that's what your machine shows). If it's below 5, and you don't feel badly during the day, you're doing pretty well for a beginner, but if it's high, and you don't feel rested at all, then changes should be looked at, but one at a time so you'll be sure which problem is which. Feeling like you forget to breathe when you're awake is common - don't worry about that.

My average ahi for the last four days is about 8. I looks good, but I don't feel that great. And my average use has raised from two hours per night to four and a half, thanks to asking for a machine with c-flex. Anyway is ahi useful?
http://www.respiratoryreviews.com/sep02 ... Index.html

Guso, glad things are better even if not good. I'll leave technical replies to those who are qualified. I would like to suggest that you pace yourself and not rush into machine changes. For one thing, it may be unnecessary. For another, take some time to discern which machine you REALLY need, as getting one is a big decision, and expense, and hassle. Over time watch your data and look for trends. If we make changes every time we have a rough night, for some that could be a roller coaster ride, as so many things can affect our sleep, even our apnea. Things like meds, what we ate when, alcohol consumption, position we slept in, congestion, etc. Be methodical as you move forward, building a framework that will support your next steps. In my opinion, mastering leaks from either the mask or mouth should be accomplished first. If you don't get that right, you're likely to base decisions on flawed presumptions. Then see if your nightly data begins to reveal a pattern of problems. Maybe you would do better with a bilevel. Would just hate to see you make that leap on a maybe.

I have been using basic cpap with the titration pressure 4 months for no results.So I have asked for this machine with c-flex and started experimenting, my hope was that c-flex could mimic the titration machine "easy-breathe" which it cannot. At least it's better than basic cpap. I know it is a big decision to buy a machine. In fact I was going to buy the machine I have now (I don't own it), I'm glad I tested it and didn't buy it. But there is no way to know what machine I need since I don't own a titration lab. I can only guess which one I need with endless speculation. I have learned a new machine may not live to the expectations if didn't tried it first. So I can only guess what I need is a machine equivalent to the titration machine (resmed autoset spirit II with easy-breathe), since it felt good and the study showed no centrals o mixed.
I think it was a great titration if I was going to use the same machine every night. You are right in that I have to master leaks (that's difficult). Looking for trends is difficult,the only info I have is just ahi,lpm, average pressure (if I use auto) and usage hours averages.
No graphs or anything advanced.

Do you live in Spain now? Does one need a prescription to purchase CPAPS/APAPs/BiPaps there?

Was the titration machine a ResMed? Newer ResMed have EasyBreathe technology built into the blower itself. It makes breathing feel more natural even without EPR. I'm thinking that it is unlikely that EPR was on during a titration because it varies the pressure between inspiration and expiration and that might affect the results of the titration.

Yes the epr or easy breathe was ON during titration, because I felt like I was breathing like I was doing sport yet I wasn't making any effort, and when I got the basic cpap machine it was a letdown because I expected that effortless breathing. I was thinking buy a machine in secondwindcpap which is in the USA, elsewhere they seem to be unaffordable. They would be happy with my prescription if I wanted to buy a cpap. I don't feel like buying a bipap (it's expensive,I have no prescription, diy titration (sounds funny)) what if I don't like the bipap? I would have to eat it. Since I know that the autoset spirit II probably works and it is officially a cpap I better buy one of those.
The problem is that it is very expensive. I know that cheaper resmed cpap also have "easy-breathe"

Does "easy-breathe" work so well in the cheaper resmed cpaps?

I don't have any software to check how I do. I have been using the new machine for 4 nights.

[kteague]

Just from reading on here it seems that sleeping great at the titration, but finding that experience elusive at home, is a problem others have talked about. It would be good to hear from them and learn what their answer has been. Four months is a very significant amount of time, and one would expect to see progress once the mask issues, leaks, and adjustments level off. I was one of those people that the first several months held nothing positive as I had one issue after another. Once things were on an even keel, the treatment has been fairly smooth sailing ever since. You're right, without the detail software would give, it's hard to tell a lot. Ideally you would be able to see the proximity of leaks and events. Some have even added video to the assessment to see how position relates to events. Hopefully others here will be able to offer input that will help you find solutions for your particular situation. Being able to get what you need and being willing to do whatever it takes puts you in a good position to realize your goals of comfortable and effective therapy. Best wishes.

[Julie]

Yes, AHI is 'the' number to go by, along with 02 saturation. If your AHI is still at 8, while of course a lot better than on the study, it's still high as Cpap-treated OSA goes and it's the number you want to get lower.

[Guso]

Hi again, I have upload my two studies for anyone to check.
Here they are: http://www.megaupload.com/?d=1H3U9GN1

Let's see if they missed central apneas o mixed apneas in the titration because of "easy breathe"/EPR.
Any skilled interpretation of the studies is welcomed.

[kteague]

Hey Guso, your link took me to a site to download games.

[Guso]

Hey Guso, your link took me to a site to download games.

The link is right, the "games" are advertising. Megaupload is very popular in Europe, just like rapidshare. Millions of people use it to download contents that others
uploaded.

There is a lot of advertising but you must enter the characters shown in the box, (it is to tell humans and automatic downloaders apart).
There is a big button to download the file, click on it after the characters are entered (case sensitive I think). Then it will show a premium download button (DON'T CLICK ON IT), there will be a backwards time counter starting at 45 seconds, after the time is gone there will be a normal download button just below the premium one, CLICK ON IT.
By now the file should be downloading.The file is in .rar format , winrar is used to extract the contents, winrar is very popular also.
Sorry, it can be complicated if it is the first time. Which is the usual way here to post the graphs?.

EDIT: check this video: https://www.youtube.com/watch?v=sEI0klP8QXM
It is a tutorial on how to download from megaupload, it is a bit dated, because the site looks slighty different but the steps are the same.

[Muffy]

After a very cursory review, the respiratory events in the diagnostic epochs presented (Epochs 17-20), although scored as obstructive hypopneas, have a very strong central flavor to them; there are no REM events in titration; and the CPAP DL shows SBD that is totally out of control. It may be that you are a CompSAS and ASV could provide benefit.

Why all the EEG snapshots in the titration report?

Muffy