Newbie asking for Help

Hi from another Newbie.

I've been reading the posts and trying to figure things out myself - but I felt it's time I asked.

Very brief background. My insurance does NOT cover any of this so it's all out of my pocket. I went to my initial consultation with the sleep doc and told him I'd like to avoid the expense of the sleep clinic. He said that looking at my age/weight/sex/throat & mouth build - I'd most likely be put on a CPAP after the sleep study anyways. He prescribed an auto cpap that would hopefully give us enough numbers to continue without the expensive visit to the sleep clinic.

I went online and rented a Respironics M-Series Auto w/A-Flex and heated humidifier, and purchased a ComfortGel FF mask.

Since we were starting from scratch my doc prescribed a pressure range of 5-20.

First night - I had a little problem falling asleep but eventually did only to be woken 3.5 hrs later by a (what someone else here described) hurricane - maximum air being forced at me which would not subside even after I started breathing normally. I finally had to take the mask off and shut off the machine so I could fall asleep.

This has repeated every nite for 5 days in a row happening a little earlier each nite from 3.5 hrs back to 1.5 hrs in. I was though finding it much easier to fall asleep with the mask on. Still I had to just stop using it so I could get a good nights sleep.

I talked to the online merchant who rented me the machine and they said this was normal - the unit was responding to a breathing issue and it takes awhile to return to normal (he mentioned 30 minutes, tho I've never waited more then a few minutes before shutting it off).

Other things I've tried or learned:
Auto Off: ON or OFF - no difference
Aflex at a setting of 3 is the only way I can go. Cflex doesn't do it for me.
I set a 25 min Ramp starting at 4.
I tried turning the AutoMax setting down to 8 (so it was 5-8) - no difference, except the hurricane was less intense.

I get it that the machine is reacting to something but shouldn't it respond quickly when breathing returns to normal?

If the machine is going to completely wake me up in the night, I may as well stick with the apnea (kidding, I have to do this for my wife if nothing else).

Since I'm not paying a local DME and my sleep doc, while helpful, doesn't really know the machines (and I don't expect him to). I have no one else to ask.

Any suggestions or comments or whatever???

Thanks,
Marc

Great machine - I have it myself. There's a BUNCH of settings on it. You really need to just play with all of them to find the one that works best for you.

After some time on Cflex of 3, I switched to Aflex for two weeks. HATED IT! Thought I hated AUTO, but turned out I hated AFLEX. I'm like the only one here. Everyone else loves it. In my second year, I've now turned off ALL flex, and am breathing comfortably against the flow.

For newbies, I recommend maximum Cflex (3). Try the Aflex, you might like it better.

You're on the right track. It's going to be a learning curve. You've found us, so you're in better shape than the average bear.

BTW, if you'd like to try another mask, before buying one, you can sign up for a free "test drive". See the links below in my signature block. I run the Nasal Aire II test drive, and highly recommend that mask. It's the only one I can sleep with.

Welcome!!!
Babs

Thanks,

I guess I fall into the Aflex group...

And I've been pleased with my Comfortgel FF mask - I am wondering how hot it will be in the summer time though.

But, back to my question (buried in my post): Is it normal for the machine to respond aggressively as it does and then take a LONG while to reduce the pressure after normal breathing returns?

Thanks,
Marc

I don't know how to answer that. You might try running the machine in straight CPAP mode, and see if you tolerate that better, or you might try narrowing the range. For example, right now I'm running 11-14. Only a two digit spread.

Very probably, your reaction to the machine is just part of getting used to your therapy. However, there are SO MANY VARIABLES, it's tough for me to say.

I'm hoping one of the more intelligent members can give you a better idea.

Cheers,
B.

Thanks again...

I have tried running straight CPAP - I couldn't handle that at all.
I tried a range of 5-7 and that didn't help.

Yes there are a lot of variables - and I feel like I don't have a good idea how to approach changing them other then guessing.

My frustration is that I'm using the unit less each night not more.

-Marc

Well, at 5-7, I would feel like I'm suffocating. I would be freaking out for lack of air. I'm sorry, what is your prescribed pressure?

Cheers,
B.

major4579 wrote:Thanks again...

I have tried running straight CPAP - I couldn't handle that at all.
I tried a range of 5-7 and that didn't help.

Yes there are a lot of variables - and I feel like I don't have a good idea how to approach changing them other then guessing.

My frustration is that I'm using the unit less each night not more.

-Marc

You aren't giving enough information for people to have a shot at helping you.

I have tried running straight CPAP - I couldn't handle that at all.

What pressure setting did you use, and what do you mean by "couldn't handle that?" You'll need to be a lot more specific about why it was a problem. It sounds like you have decided that straight CPAP won't work for you, so you aren't interested in hearing suggestions for trying to make that work.

I tried a range of 5-7 and that didn't help.

I have no idea what you mean when you say "that didn't help" other than you still can't use the machine effectively. BE SPECIFIC.

I tried turning the AutoMax setting down to 8 (so it was 5-8) - no difference, except the hurricane was less intense.

I'm really struggling to understand this. You are experiencing the hurricane effect at 8 cm of pressure? You are going to feel some "wind" in a full face mask such as you are using. You will just need to get used to that. Many things that keep us from sleeping do so because our minds have not yet accepted them as normal and shoved the reaction to that down to the subconscious level. Like when you first get braces or have any palpable dental change. It takes time for your mouth to feel normal again and not to "notice" the change. Then when you have the braces removed, it takes time, again, to stop noticing the missing braces.

Here are some suggestions:

1) Don't start your ramp at 4. Most people can't even breathe at 4 and you are just making it harder on yourself. Try turning off the ramp entirely.

2) Do some experimenting during waking hours. Set it for straight CPAP, and see what it feels like to breathe at various numbers, starting with, say, 6 cm and increasing it from there. I would also lie down in the position you like to sleep in while trying this experiement to see what issues you are having. When you get to a number that you find difficult to deal with, trying backing off of that and setting that as your straight CPAP number. For example, if you have troubles at 10 cm, then set it for straight CPAP at 9 cm. And don't use the ramp. You really shouldn't need a ramp for things under 10, most likely.

3) Give it time. The wind blowing on your face may take a while to feel normal.

4) Try a nasal mask.

It sounds to me like you may misunderstand how the auto works. I'm new here too, so I could be wrong, but this is what I am finding with my machine.

When the machine detects a reduction in your air flow, it increase pressure to open your airway. If you begin to breathe fully it will lower pressure again, but only to a level that will keep you breathing well. If you need a pressure of 10, it is unlikely to keep dropping all the way back down to 4. When mine was initially set on 4-15, it stayed at 6.5-7 most of the time, going up further to stop apneas or hypopneas.

Because I found that I was still having more events than I wanted to, because it didn't always get high enough, quickly enough, I raised my bottom number to 7, then to 8, and am about to raise it again. For me, it almost never goes over 10, but I don't have leaks, and don't seem to be snoring. Between 8.5- 10 seems to work for me.

When I first started, if I woke up while the machine was at 9, it felt pretty windy, but now I have gotten used to that pressure. It's possible that your machine is going up to 20, but you haven't given the data to help people know just what is happening. Does 8 feel like a hurricane to you, or not till it gets to 20? Are you having apneas or hypopneas? What data is your machine showing? I am not familiar with your machine, so can't tell you how to get the data, but others can.

But, back to my question (buried in my post): Is it normal for the machine to respond aggressively as it does and then take a LONG while to reduce the pressure after normal breathing returns?

It is normal for the machine not to reduce pressure when you're awake. You have to realize that all automatic machines can only function normally when faced with the regular breathing patterns of sleep. They are like a fish out of water when you're awake.
The automatic machines identify apneas by doing comparisons of present breaths to previous breaths - while you're asleep. Once you wake up, your breathing is irregular, and any calculations the machine makes are wrong. That's why its "normal" for the machine not to drop the pressure when you're awake.

When I started, I felt a pressure of 8 was a lot - but you really do get used to it.

Since you've got a vendor you can rent from, I suggest you rent other kinds of autos from him. The machines' algorithms are different, and you may find one of them is better for your specific breathing pattern than the other. All autos were not created equal, although all autos do need you to be asleep for them to function as planned.

O.

Marc......

I'll try to help by letting you know how I started out. I went through the sleep test....and my "doctor" guessed that 9-cm was the best pressure for me. I've since learned that "9-cm" is sort of the 'average guess" for most with standard sleep apnea problems.

I had to purchase my own machine....no insurance......and i've had no interference from anyone as I've worked out my own therapy. My machine is very similar to yours.....it has CFLEX, but not AFLEX. I originally set the machine to run from 4 to 20-cm.....and quickly learned that a wide-range setting like that was unworkable.

Fortunately, I immediately purchased software so that i could get a report on my progress every morning. I urge you to quickly purchase "Viewer' software with a Card Reader for connection to your computer via USB. Without software, you're flying in a "fog" without "instruments". With it, you can give yourself a "home-style" sleep test every night (if you want to).

After a couple of uncomfortable nights, I re-set my machine with a low-end pressure of 8-cm......and a high-end setting of 13-cm. I originally had my ramp set to begin at 6-cm and about 15-minutes.

By watching my software, I realized that I was starting at a pressure that was too low.....and started "walking it up" at about 1/2-cm per change. I'd leave it set for a week....watch the results....then, change again.....so that I was continually experimenting.

I learned that a low-end pressure that was "too low" allowed hypopneas to easily develop....so I kept bumping up my low end pressure until I pretty well prevented them from happening.....and I was carefully analyzing my software reports every day.

My present settings are:
"Auto"
13-cm high end
9.5-cm low end
CFLEX-3
10-min ramp
begin ramp at 8-cm
mask Alert - On
Auto Off - Off
Split Night - Off
Leak Alert - On
Patient Reminder - Off

Again.........software is the key......if you don't have it, you're "flying blind".....

Read everything you can.....click on the yellow light bulb at the top of the page........read every post.....cram as much knowledge as fast as you can. As you learn, there's a bunch of nice people who'll do all they can to help you.

Gerald

Sorry to not respond more quickly - life sometimes gets in the way..

I think I may have been changing settings too quickly and not allowing my self to get used to it.

Starting at 4 doesn't bother me - I feel I can breathe normally - not starved for air at all. The mask dynamics aren't the issue - I find it comfortable and can easily breathe.

Maybe a better way to describe the problem is that the machine is pushing more air at me then I can handle - I wake up and find myself hyperventilating in trying to take in all the air or if I don't do that, the extra air breaks the mask seal and causes leaks. (This happened even when my max was set at 7 - just not as bad as when the max was set at 20).

More importantly, I find it impossible to fall back asleep - thus ending my nights use of the cpap machine.

I haven't given up yet.
-Marc

You will get used to it. I use a CPAP of 10 with a C-Flex of 1, and to me it's like it's not even on. And like Babette, if I had a pressure setting of 5 or 6 I'd feel like I wasn't getting any air. When it first kicks on, it blasts pretty good but after a couple of breaths it settles in and I just breathe easy.

I might suggest you grab a newspaper or magazine and kick back with your machine running at CPAP 7 or 8 and let your body get acclimated to it. Kind of like training.

Are you getting any AHI feedback for the time that you are on the CPAP?

I've ordered a smart card reader, should be here Wed. Then I'll be able to review some numbers..

major4579 wrote:I've ordered a smart card reader, should be here Wed. Then I'll be able to review some numbers..

Do a search for Repironics Clinician Mode and you'll find a way to access a detailed menu. One of the options lets you display your AHI/Leak numbers on a 7 day average and 30 day average. Until your software arrives, it's kind of nice to see that way. Some people reset it each night so their "average" is actually the latest night's data, but that's not necessary if you have the card reader coming.