Breathing would be useful.

David Williams · Post by **David Williams** » Sat Nov 27, 2004 12:58 pm

Hi Folks

I am new to this forum and 1 week into CPAP.

On the whole I am struggling with the machine I find the nasal mask very uncomfortable digging in ect. I find a strange sensation using CPAP and am wondering if anyone else has experienced this. I keep waking myself from a dose, aware that i am not breathing almost as though I have forgotten to breath. A large breath and off I dose again. No sign of obstruction that I was aware of befor the machine. I always thought I woke myself up snoring.

I have had a real battle with the UK NHS to get as far as this diagnosis, being told that my symptoms were depression or lack of fitness or just about anything else. I have had to play the system to get as far as this. I am a nurse and understand the system and if I had not used many back doors I would still be waiting for a diagnosis.

Anyway, thanks for your time
David

Dutch guy · Post by **Dutch guy** » Sat Nov 27, 2004 1:15 pm

Hi,

It could be that you open your mouth when sleeping. When open it is almost impossible to breath (try when awake) and you'll wake up from that. Probably with a dry mouth.

solutions:
- have some patients and try it for a while (a cpap needs getting used to)
- full face mask
- some people tape their mouth shut. I don't like this one...but there are people who do it.

Give the cpap a chance at least a few months. Not using it won't bring you anything...

rested gal · Post by **rested gal** » Sat Nov 27, 2004 1:27 pm

Hi David,

I'm not a health care professional of any kind, but I wonder about three things in what you've described. Starting with perhaps the simplest first:

1. Mask leaks and/or air leaking out the mouth. If the therapy pressure is escaping one way or another out into the room instead of where it's supposed to go, you aren't really getting "treatment", so you would indeed wake up needing a deep breath. The feeling of having held your breath might be an obstructive apnea event that wasn't being cleared. The right mask is really a big part of the puzzle in getting comfortable, efficacious treatment.

2. Do you feel it's a pretty big effort to exhale against the pressure? If so, you might actually be having trouble breathing against the pressure while you're asleep. Shallow exhalations because of difficulty breathing out against the pressure might lead to a feeling that you've been holding your breath and cause you to wake up for a deeper breath. If that's the case, then a cpap with C-Flex (lets off some on the pressure for each exhalation) or even a BiPap machine (more adjustments for both inhalation and exhalation) might help.

3. Much less likely, but a possibility: In your sleep study, were a lot of "central apneas" noted as a particular problem? ("Central" as opposed to "Obstructive" apneas.) With central apnea, the brain does literally forget to tell the body to breathe. Supposedly cpap therapy can't do much about centrals, but at least one lady (christinequilts is her nickname on this and other message boards) who was diagnosed with rather severe central apnea has at least cut her centrals in half by using a very expensive type of BiPap "ST" - the "T" standing for "timed" - a feature which tries to kickstart the breathing when the brain forgets to say "breathe." Not a ventilator, but (as I understand it, and I may be completely mistaken) the machine just starts switching on its own between inhale/exhale pressures - as an attempt to nudge her into breathing spontaneously again.

What pressure were you prescribed and what machine and mask were you given?

Dutch guy · Post by **Dutch guy** » Sun Nov 28, 2004 4:35 am

Hi,

This morning I read about another possible cause.
It is called 'sleep choking syndrome' :

This is how it is described in the book (this is my poor translation):
The patient awakes frightened during the period of drowse (The period you start sleeping). This can occur one time or several times. The hart rate is up and the patent awakes with a scared feeling that he is choking. This seldom happens in the later stages of the night. The patiënt is instantly awake. The fear fades quick.
Sleep choking must be separated from short of breath arousals that occur with OSAS. The sleep choking syndrome seldom leads to insomnia but can secondary evoke fear.

It also states it is important to rule out the possibility of OSAS.

So maybe you can keep this in mind and maybe talk to your doctor about this possibility.

David Williams · Post by **David Williams** » Sun Nov 28, 2004 10:55 am

Thanks for those quick responses. Plenty to think about.

rested gal. I haven't been shown my sleep study or given any other info about my diagnosis. I must push for this. I have been given a test machine for 2 weeks a Resmed Autoset Spirit and an Ultra Mirage mask.
I tried a snooze this afternoon and found that fastening the hose to my head instead of leaving it loose (the hose that is!) gave an improvement as far as seal when I moved.

Thanks again. Its good not to be alone in this.

rested gal · Post by **rested gal** » Sun Nov 28, 2004 4:34 pm

David, if they gave you a test machine (the Spirit autopap) to use for two weeks, it's possible that they left the settings "wide open" 4 - 20. Many people have difficulty breathing down at 4 or even 5 - a suffocating feeling. That's not really what you described, but possibly that might be what's waking you when you doze off. Or maybe the low pressure is letting obstructive events happen making you wake up needing a deep breath. Or, they may have turned ramp on, but have it starting down at 4. You might want to have them set your low starting pressure at 6. And ramp at 6 to start with (or just turn the ramp feature off.)

As you are a nurse and familiar with the system, I'd politely insist on a copy of your sleep study report.

While ResMed's Ultra Mirage is better than most nasal masks that you could have been given, I've had it dig into my face too. The most comfortable nasal mask I've ever tried has been ResMed's Mirage Activa. Try to get an Activa from them, if you can.

Dani · Post by **Dani** » Mon Nov 29, 2004 2:33 am

Hi David,
Another thought may be that your pressure is too low so it's not opening your air passages and eliminating the obstruction. Or...I had the same problem you do and it turned out that because I breath through my mouth most of the time and only my nose was covered, I automatically started to breath through my mouth during sleep, and the air from the CPAP bypassed my nose and forced it's way out of my mouth (the path of least resistance). The force of the air coming out prevented me from breathing in. The technicians had me try a chin strap to keep my mouth closed. It was very uncomfortable as it was very difficult to keep it in place, and even when it was, I parted my lips and breathed through my teeth. I insisted on a full face mask and am very happy as I don't have to worry about whether I'm breathing through my nose or mouth. It's all covered.
Dani

killikat · Post by **killikat** » Tue Nov 30, 2004 8:42 pm

I've been on cpap mask for about 4 weeks. The first week, I was getting air in my stomach and then would wake up not being able to breathe. I went from the nose mask to the full face mask and wala! It worked! Here I am a mouth breather at night and even with the chin strap, my mouth would open - letting air escape (sorry, the jaw is stronger than a chip strap held together with velcro! Hope this helps.

chrisp · Post by **chrisp** » Mon Dec 06, 2004 9:45 pm

I have had a Spirit for 2 years. Is it set as a CPAP or Auto ? It should adjust automatically in auto mode. The Resmed Spirit is the Cadillac (Rolls- Royce in UK) of APAP. Try another mask and give it a few weeks. . Maybe some nasal spray from your GP such as Flonase or Nasonex before bed may help.
Good Luck,
Chris