To Rested Gal, or anyone. Please help!!!

[John 32]

Hi Rested Gal:

I know you´re not a doctor. I´ve read that in several of your posts. But I feel from reading them that you know a lot as a patient. I´ve been meaning to ask you for advice.

I´ve had two titrations already. One showed 4 and the second showed 16.

With 4 I felt like nothing happened. Later I learned this and not using CPAP at all was the same. My first doctor never told me this. She wouldn´t believe I wasn´t sleeping better, so I changed doctor.

With 16, I felt like I can´t exhale well and end up sofocating. My new doctor won´t believe this either. Now that I read the posts I feel like with this high preassure I should probably be on a different, better machine, like a BIPAP or a BIPAP auto.

The thing is, after my experience, which I just explained a little, here in Colombia, South America, I feel like doctors and sleep labs don´t seem to be very prepared for treating sleep apnea, specially severe cases like mine (I feel like crap!).

I am slim, and I´ve been told by several otorrynus I have no structural problems in my whole airway passage. The only pattern I´ve seen in my sleep studies/titration is I have a lot ot hypopneas.

I´m using right now the Respironics Auto PAP with C-Flex with the full preassure range (20-4). Since I feel like I don´t know my preassure still, this is the only way I feel I can tolerate PAP therapy and get some sleep, not listening to my doctor.

If it was up to him I´d still be sofocating with that 16 preassure on a straight CPAP machine. I sleep somewhat better than with no PAP therapy at all, but I´m still not feeling rested. Last night I recorded myself with my video camera and I could see I still jerk waking up, as if I still have apneas/hypopneas.

Could this be an indication that I need more preassure? The results from the auto PAP smart card show that I spend most time on preassure 8. I also used to have mouth air leaks, which I now controll by taping my mouth shut. Sometimes I get aerophagia from this. By the way I use a nasal mask, the ResMed Mirage Activa.

So, I just made the appointment for another titration. One doubt I have right now is, I´ve seen when I´ve had them done they use a BIPAP Auto with B-Flex. If this machine is more specialized for finding your IPAP and EPAP preassures, how come they´ve come up with just one number as your air preassure, prescribing you a straight CPAP machine?

Aren´t they forgetting things like easying your exhalation (Bi-Flex), or the change in the AHI number from the different sleeping positions through the night (Auto PAPs)?

Do sleep studies/titrations in the US/Canada show the patients´ IPAP and EPAP preassures for doctors to prescribe them? If not, like here, how do you know how to set these preassures if you wanna get a BIPAP or a BIPAP auto?

So while I wait for my next titration, should I buy me a full face mask to solve my mouth air leaks, or could this problem be solved by getting a BIPAP/BIPAP auto. I´ve read here that air leaks can be caused ´cause you can´t exhale properly.

I´m sorry for dumping so much information on you like if you were a doctor. Like I said, I know you´re not. So, please feel free to comment anything, if you want. Don´t feel compromised to do it.

I just feel like I can´t talk to doctors here anymore ´cause they won´t listen or they don´t seem to know much. I believe more in this forum, and it shouldn´t be that way ´cause you´re not supposed to treat yourself right?, but what can you do?

Everyone else´s help is also welcome. Thanks.

John.

[blarg]

I´m using right now the Respironics Auto PAP with C-Flex with the full preassure range (20-4). Since I feel like I don´t know my preassure still, this is the only way I feel I can tolerate PAP therapy and get some sleep, not listening to my doctor.

I completely understand how you feel. It takes a long time to get used to the pressure. My thoughts:

1: Your first titration was botched.
2: Your second titration is probably closer to your actual pressure.
3: You probably SHOULD have a BiPAP Auto.

But given that you probably won't get one from your doctor, to begin getting treatment as soon as possible, I'd raise that minimum pressure up off of 4 to whatever you can stand. Hopefully it'll be at least 10. Then you'll be able to start getting some at least decent treatment.

After about a week on 10, go up to 11, etc.

Now some tips for tolerating the pressure. Don't try to breathe completely out like you would without the machine. Just breathe out as much as you can without straining in any way. Then breathe in fully. Repeat. You'll probably find after a minute or so of this, it'll still feel weird, but you'll feel like you're breathing properly.

Also, turn C-Flex on on your machine if you haven't already. If you have then try a few other settings. It helped me a lot to get used to the pressure.

In the mean time, look around to see if you can get the machine you'd really like to have.

[Patrick A]

I agree with Blarg.....I would turn on the cflex and start @2 You can't ramp it because it's auto in auto mode. I might raise the lower pressure setting to about 8 or 9 to start out.
Good luck

[blarg]

You can't ramp it because it's auto in auto mode.

Just wanted to point out that on the classic RemStar APAPs this is true, but the M Series will allow you to ramp up.

Personally I dislike ramp because leaks will generally only occur at higher pressures. So you're about to fall asleep when leaks wake you back up.

But anyway, something is better than nothing. Like you said, 4 might as well be nothing. Bump it up to 8 or 10 or whatever you can stand.

[ozij]

I am slim, and I´ve been told by several otorrynus I have no structural problems in my whole airway passage. The only pattern I´ve seen in my sleep studies/titration is I have a lot ot hypopneas.

Could this be an indication that I need more preassure? The results from the auto PAP smart card show that I spend most time on preassure 8. I also used to have mouth air leaks, which I now controll by taping my mouth shut. Sometimes I get aerophagia from this. By the way I use a nasal mask, the ResMed Mirage Activa.

John, I'm not clear from your letter if you want to undestand your therapy, or if you have to convice a third party that you need an automatic bipap.

I think you should treat you time with the APAP as a time of self titration. I don't think your data, till now, indicate that you need a automatic bi-pap.

At this point , you know 4 is not enough, 16 is difficult to breathe against, and the autopap indicates you spend most of your time a a pressure of 8 or less (that is what the 90 percentile means)

If you want to use what you've learned from the APAP, here's what I'ld do:

I'ld check my hypopnea level, and my NR (non responsive apnea) level. You say you had many hypopneas on the studies. What about on the auto?

There are condition in which autos are not as good at responding to hypopneas as they are at responding to hypopneas. They are actually progaramed not to respond. A good way of getting rid of hypopneas is raising your lower range. I'ld start it at 8, based on the machine's info.

Now, since you had (not surprising) trouble breathing agains 16, and since you machine indicates you spend most of your time at 8 or lower I would try to limit the top of the range to 8 as well - for starters.

Unless I feld notably worse, I'ld check it like that for two weeks - both how I feel and what the data reports.

I would continue making changes based on the data (and how I feel) - but that's what my first step would be.

O.

[Julie]

I think you just need to a) use your c-flex feature (not clear if you've tried it), and b) set your machine at something like 8 for bottom pressure and 12 for the top. You may not need 16, but need to give various levels a reasonable try while you're using the c-flex. You may not need bi-pap at all - most people don't. Also, your mask may be leaking or not fitted properly and that can have an effect as well.

[John_M]

I´m using right now the Respironics Auto PAP with C-Flex with the full preassure range (20-4).

Are you using a Respironics M-Series with Cflex ?

It has a SmarcCard which has your data on it. Could you send one of us either
1/ An Encore Pro printout of the data on the SmartCard or
2/ The Smart Card itself
3/ e-mail one of us the pdf file of Enocre Pro Data printout
4/ Send an export file to one of us

so we can all look at what's actually going on with you ?

When my Auto showed it was sitting at 8 cms H20 most of the time, I found that straight CPAP at 9 cms was the best for me.

John M

[Patrick A]

You can't ramp it because it's auto in auto mode.

Just wanted to point out that on the classic RemStar APAPs this is true, but the M Series will allow you to ramp up.

Personally I dislike ramp because leaks will generally only occur at higher pressures. So you're about to fall asleep when leaks wake you back up.

But anyway, something is better than nothing. Like you said, 4 might as well be nothing. Bump it up to 8 or 10 or whatever you can stand.

[rested gal]

John, you've gotten some very good suggestions from the others. The main thing I'd probably do, if it were me, is raise the minimum pressure the way several others advised. I'd give 8 , 9, or 10 a try for the lower pressure. I'd set the max at 20 and take a look at the data after a couple of nights to be sure the autopap was behaving.

Experiment with all the C-flex settings, including trying it turned off.

I personally like C-Flex set at "3" for as much relief as it will give for exhaling, but find what suits you.

If you'll log-in, John, and send me a PM with your email address, I'll be glad to offer some more suggestions -- just as one cpap user to another -- 'cause I'm no doctor, as you know.

[John 32]

Hi.

Thanks all!!!

I´ve slept two nights in a row with my auto set at 12-8.

First night I slept for like two hours well. Last night about four. That´s an improvement!!!

I think have this major thing going on here, for I don´t don´t know how to interpret the smart card results. Can you upload them somehow here?

Now, I just noticed the AHI indicator. It shows up on the Auto screen as something like:

7 5.2/h
30 6.5/h

know AHI stands for Apnea/Hypopnea Index. Something like the amount of apneas you had in the night. But what do these numbers mean? And do they apply to only last night?

There are other data icons as I move throught the arrows of the auto, but I don´t know what they are or if they can help.

There´s this little sand clock, a sand clock higher than 4, a 90% preassure, and an icon that looks like a leak icon I think. All of them with numbers. What are the numbers to the left and what are the numbers to the right?

Thanks so much to all again!

John.

[iceman]

Hi, I also have a series M Auto along with the encore software and Activa mask which I love. I have been looking at my data for about 6 months and have ended up with a pressure setting of 9 to 11 which works great for me.. My C flex setting is 3. I use the encore pro analyzer program which I find is the best for viewing results. Look under "Pressure" to view results vs pressure. Good Luck and happy sleeping........

[Gerald]

John......

By reading your posts, all of us realize that you're doing your best to understand your machine.....and your treatment.

I would suggest that you put maximum effort on getting the software that will allow you to monitor your own progress. You may have to request that your doctor purchase it for you......but....be absolutely relentless in your quest to get a copy of the software you need. You're "medically blind" without it.

My machine is a "M" series auto. The software it works with is Encore Pro 1.6 and I have the program running on Windows XP. If and when I migrate to Windows Vista, I have a copy of Encore Pro 1.8 waiting for the transition. It's my understanding that EP 1.6 will not work with Vista.

I also understand that the newer "M" series auto cpap with A-Flex needs EP 1.8.

I also have a copy of jskinner's "Analyzer Software". What James Skinner has created is "first rate"........and when coupled with Encore Pro Software, you get a picture of your progress that you can't obtain in any other way.

James Skinner gives his software "free" to those of us who need it.......and he well deserves payment for his efforts. Send him a few bucks if you find his software valuable like most of us have.

The "Infineer" card reader that reads your card and connects to your computer with USB cable is available.....from Hong Kong....if you can't get your doctor to purchase one for you. Some of us have purchased it from Hong Kong.....and someone will tell you how to do so if you need to go that way.

You have the smarts and the will necessary for successful therapy. Don't be "bovinely compliant".....take charge of your own treatment. Listen to what your doctor says.....read everything you can get your hands on about your difficulty.......and run it all through an "Ox Machine" (a common-sense process that separates the bull crap from the real deal). Over time, you'll learn how to spot the BS.....and those who try to manipulate you.

You can do it.

Gerald

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[rested gal]

John, those AHI numbers are weekly (7 day) and monthly (30 day) averages.

Be sure to check your Private Messages... I just now replied to your PM.

[jhonfa]

Thanks Gerald for your support!

John.

[amandalee]

To answer one of your questions, a full face mask can be quite helpful under certain circumstances.
Personally I can't use the nasal ones--I get really bad allergies, and when my nose is stuffed up (quite often) I end up breathing through my mouth.
So a full face mask might help you, it's one thing you could consider.
I'm very new at this though, so I'm not sure how much my advice is worth.