New to CPAP - cannot cope with it

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
dormirjespere
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Re: New to CPAP - cannot cope with it

Post by dormirjespere » Sun Mar 18, 2012 9:05 am

It's terrific you found this forum early in your journey. I wish I had.

I, too, would wake in a panic sometimes and rip my mask off, and then say the heck with it, sleep w/o it. But after being so wiped out when not using it, I quickly learned that if I woke up and had ripped the mask off, I'd go get a drink of water, put it back on and do progressive relaxation or sing a song or something. After 2 yrs, I rarely wake up w/o the mask on.

Stay with it, your life depends on it.

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KevinAC
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Re: New to CPAP - cannot cope with it

Post by KevinAC » Sun Mar 18, 2012 9:35 am

Drowsy Dancer wrote: 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)?
Not sure what a split study is. I visited twice: once w/o CPAP and once with CPAP. I like to sleep on my right side. With the mask I find myself more comfortable on my back.

Sleep Latency 5.0, REM Latency 108.5, Apneic Time %: 24.0
Total OA, 144; Total Hypopneas 165; Total Central, 2.
AHI: 52.7, RDI 55.4, Lowest O2: 81, N1: 23.9, N2: 51.8, N3: 5.5, REM: 14.7

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KevinAC
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Re: New to CPAP - cannot cope with it

Post by KevinAC » Sun Mar 18, 2012 10:50 am

robysue wrote:
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.
Last night I was awake for the entire ramp time and beyond. I think my sleep latency is longer now that I have new noises to hear. Is that a leak? Is the hose pull causing me to lose the seal? There's other things think about as well.

I'm comfortable enough but I'm not sure I'm getting enough air flow through my nose.

I woke this morning with the mask on the floor. I do not recall removing it this time. No panic this time.
AHI: 52.7, RDI 55.4, Lowest O2: 81, N1: 23.9, N2: 51.8, N3: 5.5, REM: 14.7

Mary Z
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Re: New to CPAP - cannot cope with it

Post by Mary Z » Sun Mar 18, 2012 11:00 am

KevinAC wrote:I thought I would find information here but I must be missing it.
Two days? Ready to give up? Sorry to be blunt, but man up. Yes, get used to waking up in a panic or take something to help with that, ask your doc for a med for a couple of weeks. There is plenty of information here and if you didn't find what you need you didn't read much- at least you asked. There are a lot of people on this forum without insurance who can't get a machine. Good grief, quit your whining and take the advice you've been given. Or donate your machine to someone who will realize how lucky they are. Two days? It takes some of us months.

addendum added Monday,
March 18, 2012. My comments were uncalled for and a knee jerk reaction. Totally inappropriate to post.
Sorry, Kevin AC

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Last edited by Mary Z on Mon Mar 19, 2012 8:27 am, edited 1 time in total.
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KevinAC
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Re: New to CPAP - cannot cope with it

Post by KevinAC » Sun Mar 18, 2012 1:31 pm

Mary Z wrote:
KevinAC wrote:I thought I would find information here but I must be missing it.
Two days? Ready to give up? Sorry to be blunt, but man up. Yes, get used to waking up in a panic or take something to help with that, ask your doc for a med for a couple of weeks. There is plenty of information here and if you didn't find what you need you didn't read much- at least you asked. There are a lot of people on this forum without insurance who can't get a machine. Good grief, quit your whining and take the advice you've been given. Or donate your machine to someone who will realize how lucky they are. Two days? It takes some of us months.
Hey, thanks for the input. You're a real peach.
AHI: 52.7, RDI 55.4, Lowest O2: 81, N1: 23.9, N2: 51.8, N3: 5.5, REM: 14.7

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Randyp1234
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Re: New to CPAP - cannot cope with it

Post by Randyp1234 » Sun Mar 18, 2012 1:50 pm

Mary Z wrote:...Sorry to be blunt, but man up. ....Good grief, quit your whining and take the advice you've been given.
Nice support there Mary. That'll keep the new people with problems coming back.

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Drowsy Dancer
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Re: New to CPAP - cannot cope with it

Post by Drowsy Dancer » Sun Mar 18, 2012 3:52 pm

KevinAC wrote:
Drowsy Dancer wrote: 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)?
Not sure what a split study is. I visited twice: once w/o CPAP and once with CPAP. I like to sleep on my right side. With the mask I find myself more comfortable on my back.

Sleep Latency 5.0, REM Latency 108.5, Apneic Time %: 24.0
Total OA, 144; Total Hypopneas 165; Total Central, 2.
OK, you fell asleep in five minutes during the study (this was the first night, right?).

A "split study" is when they stop merely watching you sleep after two hours and start experimenting with using different pressures on you and observing the effect of the pressures on your apneas (the jargon for this experimentation with the pressures is "titration").

When you look at the sleep study, are there any comments about your rate of apneas when you were observed on your back versus other positions?

If you're not feeling like you're getting enough air, perhaps the ramp is not necessary? Or do you still feel that way after you have ramped up to your full pressure?

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codinqueen
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Re: New to CPAP - cannot cope with it

Post by codinqueen » Sun Mar 18, 2012 4:39 pm

HELLO AND WELCOME! We will try to help you.Try to remain relaxed and patient. I also felt like i was suffocating while waiting to fall asleep when i was new to the CPAP. The ramp was the problem. Turn it OFF and you should feel better.
Try some herbal Sleepytime tea before bed, available in your supermarket, coffee and tea aisle.It might help you relax and fall asleep faster and longer.
If you prefer to sleep on your side, the Swift Fx mask might be a help, if it can handle your pressure of 14 cm. Several people here on the forum use a Swift FX nasal pillow mask, and they have pressures higher than the recommended 10 cm to use that particular mask, and it works for them. I use it, my pressure right now is 10 cm, and J have no problems now that I turned the ramp feature off. Full face masks made me feel panic, I thought I was being suffocated with them. If you are opening your mouth after you fall asleep, you can tape your lips or use a chin strap. I have a chin strap that didn't help me any, so I used adhesive tape. Some of us like to use tape for the first few weeks but a few don't, so you might hear from the ones that think tape is a no-no. I only used tape for about 2 weeks, and that trained me to keep my mouth shut all night. You lock your tongue behind the ridge on your mouth roof where teeth start, and that kind of makes a vacuum, and it works.
PLEASE do not give up! Your life depends on it! You will get used to it eventually- only took me 2 weeks to get used to sleeping with the mask, and the increased energy and wakefullness during the day while working and lower BP is WONDERFUL.
You should be able to try as many masks as you need in the first 30 days, so keep calling your DME about your problem until you find the correct mask. Some DME's get a little snippy if you go beyond needing 6 masks, so try the hybrid, a nasal mask, and nasal pillows, until you find the right one. Stay with it!! You CAN do it!!!

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Pressure 6-10 cm

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newhosehead
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Re: New to CPAP - cannot cope with it

Post by newhosehead » Sun Mar 18, 2012 5:39 pm

I agree with RobySue's statements below.

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.

I started with a nasal mask and did well with it at the lab and the first two nights at home. I truly believe that was because I was aware (though asleep) that things were very different and I was not relaxing. The third night was hell and I remember using a long scarf under my chin tied at the top of my head to try and get through the night. A full face mask was the answer for me, although that too took some getting used to.

Hang in there, it will get better. As for the poster who said to "man up" just ignore them. You got the study, you have the machine, you have come to the best place for advice and support. I would say you are "manning up" whatever the blank that means anyway.
Equipment: PR System One REMstar Pro CPAP
Pressure Settings: 12 cwp
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Mary Z
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Re: New to CPAP - cannot cope with it

Post by Mary Z » Mon Mar 19, 2012 8:20 am

Sorry, had a moment there- have a lot of them. When I said "man up" and my other comments I was angry at this poster because I felt like he was criticising the forum because he didn't find "information". I'm glad the rest of you are there to step in and give this guy the support he needs.

I hope I didn't make you mad enough, Kevin AC that you didn't hear the good advice and kindness, and civility that is the rule (which I violated) on this forum.

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carbonman
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Re: New to CPAP - cannot cope with it

Post by carbonman » Mon Mar 19, 2012 1:16 pm

Mary Z wrote:Sorry, had a moment there-
I did not find your advise that much out of line.
.....but, I, having been on the receiving end of the
2X4 upside the head form of support here, think it helps.
Depending on how hard it is for each person to come to terms
with this therapy, I think, sooner or later,
everyone......
alone,
in the dark of the night
has that "man up" confrontation.
At that point, you either decide to make it work
or you put it in the closet or on Craig's List and
sink deeper into the Living Death that is OSA.
"If your therapy is improving your health but you're not doing anything
to see or feel those changes, you'll never know what you're capable of."
I said that.

Still Tired

Re: New to CPAP - cannot cope with it

Post by Still Tired » Mon Mar 19, 2012 9:28 pm

Is there anything new out there besides the mask or the nose pillow? There hasn't been a night that I haven't unconsciously pulled the mask off during the early morning hours.

After 16 months, I still feel like I am smothering and have yet to make it but 1 night all the way through with the mask on till morning.

Comments?

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codinqueen
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Re: New to CPAP - cannot cope with it

Post by codinqueen » Mon Mar 19, 2012 10:45 pm

You can try TAPING the mask to your face so that if you try to remove it while you are asleep, the fact it won't come off easily will awaken you. I had to do that when I first started. There is nothing normal about sleeping with a mask on, so you need to train yourself to allow it. After a few weeks of taping the mask to your face, you will become "trained" I think, and no longer need the tape. Sometimes we need to outsmart our subconcious minds.

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Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Clear by Pur-Sleep to keep nose open at night, Cozy Hose-Boss by Pur-Sleep
Pressure 6-10 cm

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KevinAC
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Re: New to CPAP - cannot cope with it

Post by KevinAC » Sat Mar 24, 2012 8:52 pm

Nasal mask gone. Resmed Quattro FX in its place (pricey little thing). Soooo much more comfortable but still not sleeping with it. First two nights I lay awake, breathing comfortably for 30-45 minutes. Took it off and fell asleep. Tonight is night #3 in a hotel room. Maybe I fall asleep with it tonight.
AHI: 52.7, RDI 55.4, Lowest O2: 81, N1: 23.9, N2: 51.8, N3: 5.5, REM: 14.7

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kteague
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Re: New to CPAP - cannot cope with it

Post by kteague » Sun Mar 25, 2012 12:18 am

Still Tired wrote:Is there anything new out there besides the mask or the nose pillow? There hasn't been a night that I haven't unconsciously pulled the mask off during the early morning hours.

After 16 months, I still feel like I am smothering and have yet to make it but 1 night all the way through with the mask on till morning.

Comments?
It could be that your prescribed pressure is not adequate. Some machines are capable of recording data as you sleep. If that's the kind you have, there could be answers in your data. You shouldn't feel like you are smothering. It would help others help you if you could sign in and list your equipment and tell us your settings.

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