CPAPtalk.com

Wear it attached to the machine.

KevinAC wrote:I'm usually a mouth breather. I may contact the doctor to have a full face mask Rx written so that I can try that.

You can try blue "edge lock" painter's tape for delicate surfaces to tape your mouth shut. Although this might not be a good idea as long as you still have the panic thing going on.

The panic may easily be caused by an apnea FWIW. If you get the software to read the data from your machine, that might give you some idea if this is what is going on. SleepyHead will work great with your machine's data but it can be a little overwhelming with everything else you're adjusting to right now.

Drowsy Dancer wrote:PS what do you mean you "generally" suffer from "initial" insomnia? You've always had trouble falling asleep?

My wife is asleep in a minute or two. Me, no way. I'm always awake after lights out for some time. I can't put a number on it - I just know I never have fallen asleep quickly.

I am new myself and had the same problems you are experiencing.

1. I realized I am mouth breather. My first mask was a nasal mask and I had the same feeling you did.
2. I turned off the EPR, the function that reduces the breath out pressure. But turned it backup when I increased the pressure.
3. I turned off the ramp. Did nothing for me expect make me feel a bit stressed.
4. Got a full face mask.
5. Increased the pressure. After using the cpap for a while it was suggested that I need to increase the pressure and it make a huge difference.

to practice I did two things.
1. I used the mask only as much as I could during the day.
2. Before bed I used it for 30 minutes while watching tv or reading. Then took a break before bed.

Changing to a full face mask was a big deal for me. I just could not get enough air breathing via nose only.

Its a struggle in the begging but you got to try.

This morning when I woke up I thought the machine was off but it was on. I guess I am getting used to it.

BigTex wrote: 4. Got a full face mask.
5. Increased the pressure. After using the cpap for a while it was suggested that I need to increase the pressure and it make a huge difference.

I will be asking for a full face mask on Monday. I have to know what that feels like.

To the best of my knowledge I cannot change my max setting of 14. One of the things I didn't care for about the diagnosis is I've not met the the doc who wrote the Rx. All I know is some doctor interprets the polysomnography; he could be in India for all I know.

KevinAC wrote:

BigTex wrote: 4. Got a full face mask.
5. Increased the pressure. After using the cpap for a while it was suggested that I need to increase the pressure and it make a huge difference.

I will be asking for a full face mask on Monday. I have to know what that feels like.

To the best of my knowledge I cannot change my max setting of 14. One of the things I didn't care for about the diagnosis is I've not met the the doc who wrote the Rx. All I know is some doctor interprets the polysomnography; he could be in India for all I know.

Do you have a copy of your PSG? You are entitled to it. Get the FULL thing, not the dictated summary. Study it and learn.

Too early to start "dial winging" (changing pressure settings), but there ARE ways to do that on your machine.

Drowsy Dancer wrote: Do you have a copy of your PSG? You are entitled to it. Get the FULL thing, not the dictated summary. Study it and learn.

Too early to start "dial winging" (changing pressure settings), but there ARE ways to do that on your machine.

I do have it, right here in front of me. Do people post them in their profiles?

KevinAC wrote:I realized I am mouth breather. My first mask was a nasal mask and I had the same feeling you did.

Bons wrote: If your mouth keeps popping open, you may want to consider a chin strap.

Kevin,

Sorry you are having issues with your CPAP. As others have said, it is totally normal as almost everyone has similar experiences when they first start therapy. One thing I wanted to encourage you to do when you go back on Monday to get a FFM is to see if you can also get some sort of chin strap as well. I could not use my nasal mask if I didn't have a chin strap because my mouth (when I am in deeper sleep levels) would open up and let air escape, which would give me the 'Dragon Breath' sound and loose precious therapy needed to keep my airway open. I use the Respironics Premium chin strap, but others here also have mentioned using the PAPcap and the Ruby chin straps. Getting a chin strap will at least give you another option to try especially if you otherwise like your Nasal mask or if you end up having issues with the new FFM you get.

Please continue to update us on your progress, as all of us here have been where you are, can understand how you feel, and can help you during your new journey with the hose.

John

Hi - if you're a mouth breather you've been losing therapy air all along and so will not feel better at all, plus you can ditch the ramp entirely as most of us seem to do early on. Don't raise your pressure trying to overcome the mouth breathing - it'll only make it worse, but do go for a tryout of full face masks like the new Quattro, or Hybrid, or whatever works for you after you get the right size figured out and don't have large leaks.

KevinAC wrote:

Drowsy Dancer wrote: Do you have a copy of your PSG? You are entitled to it. Get the FULL thing, not the dictated summary. Study it and learn.

Too early to start "dial winging" (changing pressure settings), but there ARE ways to do that on your machine.

I do have it, right here in front of me. Do people post them in their profiles?

I don't think so, but, for example, what was your sleep latency during the study? Was it a split study? Did you have more apneas than hypopneas? Many centrals? Did your sleeping position make a difference (many folks have more "events" if they sleep on their backs--when you wake up in one of your panics, are you usually on your back? I went through a phase like that)? If your sleep latency was short, even during the study, maybe you are falling asleep more quickly than you realize.

I don't know if any of this has helped you in any way, but at least I hope it makes you feel less alone in this endeavor.

KevinAC wrote: I'm usually a mouth breather. I may contact the doctor to have a full face mask Rx written so that I can try that.

and

When my mouth pops open, the noise and oddness I don't know why this is happening. In the sleep center with CPAP I did no such thing.

These are related. The noise and oddness that happens when your mouth pops open is caused by air being pumped through your nose (via the mask), down the very upper part of your airway, and out your open mouth. As soon as you open your mouth, the semi-closed pressurized system formed by your machine, the mask, your nose and your upper airway springs a very, very large leak called your open mouth. The noise is most like both the noise of the air rushing out your mouth AND the machine pumping additional air into the system trying to maintain the desired pressure of 14cm H2O.

The oddness you notice is both the newness of the whole experience PLUS the oddness of having air literally rush out of your mouth when you are not making any effort to blow any air through your mouth.

The fix is most likely a full face mask. As to why it didn't happen at the sleep center? Could be something as simple as you weren't in your own bed and so you weren't fully relaxed enough to start breathing through your mouth.

When I do fall asleep, it's only for about 30 minutes before I wake up in a panic so intense I rip the mask off and drop it on the floor.

and

I have used the ramp feature and actually raised the start point from 4 to 7 and the time period to 30 minutes; I generally suffer from initial insomnia.

and

I'm still awake and OK with the machine for at least 30 minutes so guess the ramp up isn't of much use to me. I don't even notice the ramp up, so I guess that feature does its job.

I'd like some clarification here. Do you mean:

1) Are you awake for 30 minutes while the ramp is on and everything is comfortable and OK. And THEN you fall asleep? And 30 minutes or so after falling asleep is when you wake up in a panic? In other words, by the time you wake up in a panic, you've had the mask on for about 60 minutes (or more)?

OR

2) Do you fall asleep and then wake up in a panic about 30 minutes after turning the machine on?

The likely reasons why you are waking up in a panic about "30 minutes after going to sleep" really are dependent on which scenario is closer to what's happening to you on a nightly basis.

You also write:

I generally suffer from initial insomnia.

and

My wife is asleep in a minute or two. Me, no way. I'm always awake after lights out for some time. I can't put a number on it - I just know I never have fallen asleep quickly.

and

I want to add that I do not mind the machine while I'm awake.

Ok, so you've always taken a while to get to sleep after lights out. Lots of folks do. Pre-CPAP, how long would you estimate it took you to get to sleep on a typical night? And what did you do when you lying in bed waiting to fall asleep?

Since starting CPAP do you think your latency to sleep has stayed about the same? Or has it gotten longer? Or has it gotten shorter?

And when you are lying in bed with the CPAP on but before you first fall asleep, you are comfortable--right? When you're in bed with the mask on, but before you fall asleep, you are not feeling in a panic? And you don't feel like you are suffocating? And you don't feel like you are being stuffed uncomfortably full of air? The panic hits after you first get to sleep, right?

Because whether or not your "initial insomina" is a problem really depends on the answers to these questions. If it's always taken you about 30 minutes to fall asleep, but it's never bothered you before CPAP, and if you're still taking about 30 minutes to fall asleep and it doesn't bother you to have the mask on that long while awake, then chances are your "initial insomnia" is not really insomnia at all---it's just your sleep pattern. Most folks typically take 10-20 minutes to fall asleep. Many people take less than 10 and many people take 20-30 minutes.

But if the latency to sleep is bothering you for some reason and making it harder to get to sleep, then it's a problem.

KevinAC wrote:I had been looking forward to CPAP. But after two days I want to throw the thing out the window. When I do fall asleep, it's only for about 30 minutes before I wake up in a panic so intense I rip the mask off and drop it on the floor. When my mouth pops open, the noise and oddness I don't know why this is happening. In the sleep center with CPAP I did no such thing.

The health center support line told me that I'm going through the same thing all patient go through but gave me very little guidance in coping with this thing other than to stick with it. Stick with what? Waking up in a panic every night?

I thought I would find information here but I must be missing it.

When you get your masked figured out, try wearing it around the house while you watch tv, read, or whatever. Take short 20 or 30 minutes naps with it on. Before bed, wear it for a while, and then about 20 minutes before you sleep turn the machine on. The whole idea is to get acclimated to the mask and machine until you are comfortable with it. It can give some folks a claustrophobic feeling which is quite normal. The first night I felt that and pushed through it telling myself there's nothing to be afraid of.....no one ever died from a cpap machine that was on and strapped to their face, they've only died when they decided to quit using CPAP.

So just wearing it around the house for as often as you can and turn the machine on and stay awake with it for 20 or 30 minutes before you sleep with the pressure going. Do these these things and just keep pushing through the mental part of it as well until you are acclimated. When you get to that point you'll often find yourself forgetting that you even have it on.

Do I breathe my way or the way the machine seems to want me to breathe?

and

My max pressure is set to 14. The C-Flex+ setting is set to 3 right now but since I don't completely understand what it does I don't know if another setting is better or worse.

C-Flex+ is supposed to make it easier to exhale. Some people love it and others hate it. It's just a personal choice kind of thing. So feel free to experiment with different C-Flex+ levels (including OFF) to find which feels best to you.

C-Flex+ works by dropping the pressure a bit at the start of each exhale. However, it raises the pressure part-way back to your setting of 14cm during the second part of the exhale and the rest of the way back to 14cm at the start of your inhale. Here's a picture from Respirionics Web site that illustrates what's happening with C-Flex+:

On the curve labeled Typical Patient Flow, the patient is inhaling when the curve is ABOVE the dotted line. And the patient is exhaling when the curve is BELOW the dotted line. The curve itself represents the rate you are breathing in terms of Liters/min. In other words, the peaks of this curve are when you are most rapidly inhaling. And the troughs represent the places where you are most forcefully exhaling. Note that there is a flat part of each breath cycle that is close to the 0 line where very little air is moving in or out of your lungs. In this diagram, those areas are being treated as though they are part of the exhalation, although with some people, these flat areas feel more like part of the inhalation. Finally note that the vertical lines are drawn at the end of each inhalation and each exhalation.

Now look at the bottom set of three curves. Note that the solid line at the top represents the pressure setting---in your case the 14cm H2O of pressure you've been prescribed to use. Note how the pressure starts to be reduced just as the inhalation rate starts to decrease towards 0 and the pressure continues to decrease ("sharply") through the active part of the exhalation. But also note that as the exhale rate starts to approach 0, the pressure is raised back up part way towards the full pressure setting of 14cm. When the active inhalation is detected, the machine increases the pressure again---this time "rapidly" back up to the full pressure setting.

Now, as I said before, for many people this system works very well: The pressure drops when they expect/want it to and the pressure increases come at points where they expect/want it. In other words, for many people, the way the pressure changes "fits" how they perceive their own breath cycle of breathing in and out. And for many of these people, C-Flex+ feels like a godsend: It helps them feel as though they are breathing relatively normally with the machine.

Some people, however, notice those pressure increases that occur during the "exhale" phase and feel as though the machine is trying to "rush" them to inhale, even though the machine is doing no such thing. (I was one of those folks.) Some people perceive that very small start to the decrease in pressure that happens at the end of the exhale and feel as though the machine is cutting off the air supply before they are done inhaling---in other words, they feel as though the machine is rushing them to exhale before they're done inhaling. Some people just feel that the machine does a lousy job of matching their breath cycle. For all these people, C-Flex+ can make using the machine harder rather than easier because they feel as though they are fighting the machine. Turning C-Flex+ down or off usually helps these folks breath a bit more comfortably with the machine.

I'll ditto the suggestion to get the SleepyHead software to see what is happening when you awaken in panic mode. I'll also suggest checking out Zeo's 30 day free trial. I thought I was slow to get to sleep as well. Sometimes I am and sometimes I'm asleep way sooner than I thought I was.http://www.myzeo.com/sleep/shop/ I wake anywhere between 4 and 12 times a night, sometime with my hose wrapped around my neck. Not a pleasant thought but I don't believe there is any choke hazard. I'm more concerned about dragging the machine off of the nightstand.

Hang in there, for most of us it does get better. The first few days I felt like I had been blowing up balloons all night. Now I don't notice. When I start the machine, always without ramp, there is some mild panic getting acclimated to it. I've tried waiting a minute or two to get to a more relaxed state before masking up and starting the machine. It does help with the panic part, but I sometimes woke up four hours later without the mask due to falling asleep before I had gotten to it. So I just put up with the panicky part for a minute or two. By morning I hardly know I'm attached to it. I've been on the hose 5.5 months.