Oh I am definitely not giving up! Thanks to everybody I'm gonna keep going til I nail this thing! Thanks John!jweeks wrote:Hi,
My biggest question is why you ended up with an SV machine? I wonder if this SV feature is what you are having a hard time adapting to?
John I have no idea why I have an SV. Until 5 weeks ago I didn't know what ANY of this meant and I'm afraid I'm not very much more edumacated now. I'm taking care of my sick Mom 24/7 and barely have time to read the answers on here much less devote the TIME I really need to ABSORB it all. The Doc explained that I have Central AND Obstructive, and pretty quickly said the machine I needed without hesitation.
I run at 20/13. In looking at your plots, you are not spending very much time above 20.
LOL, again, this is the first time Ive seen the word "plots".
The interesting thing about the Swift LT is that I have absolutely no sensation of pressure when using it. I cannot even tell that the machine is on when wearing the mask. One side effect is that it keeps my sinuses pretty clear. I used to wake up plugged up every morning, but since starting with the Swift LT, I am free and clear all day long. The only gotcha with the Swift is that you cannot ever open your mouth when wearing it. If you do, you get an effect like being in a tornado, and, at least for me, it feels like it sucks the wind out of my lungs. At first, I could keep my mouth closed, but after I got more relaxed, even a chin strap didn't help. I currently do mouth taping. It isn't optimal, but it works for me.
Yeah, not being able to open my mouth is the part that seems to be freaking me out during sleep. For now, I'm not even using it at night until my Resp Therapist (what do you guys call them? DM's?) gets back in town next week. I will insist upon her lowering the pressure.She's pretty open to me trying whatever I think, as she is running out of answers. I AM using it in the daytime for a few hours to try and get SOME therapy. In fact I'm sure she will say "Youre not getting enuf therapy" at a lower pressure level, but I'll just insist. I dont have Insurance, so I REALLY want to keep her...not pissed. The Doc is great.
Please don't feel like there is anything wrong with yourself. Running CPAP at a high pressure is a tough nut to crack. Once you get things figured out and dialed in, it can get as smooth as glass. But it can be a struggle to get there. I lasted less than 2 hours the first night, and I was ready to give up more than once. Thankfully, the folks here were able to talk me down off the ledge.
-john-
Newbie Can't Get Out Of The Gate/Mask Problems
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bdonahueweedman
- Posts: 34
- Joined: Mon Jun 28, 2010 8:11 pm
Re: Newbie Can't Get Out Of The Gate/Mask Problems
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Xbondlogger
- Posts: 4
- Joined: Tue Apr 28, 2009 11:30 am
- Location: Brush, CO USA
Re: Newbie Can't Get Out Of The Gate/Mask Problems
I use a BIPAP at 20 / 18. I also could not get a good seal. I ended up with a Fischer & Paykel 431 mask and a different headgear (https://www.cpap.com/productpage/softca ... onics.html ). Some here will advise just enough tension on the mask to allow it to inflate and seal, but for me, I have to cinch it down really tight. This headgear will allow that. I too had to beg the doctor to allow me to lower the pressures to get accustomed to the pressures, so I went from 13 to 20 over a period of a month or so as I tightened the mask and carved the plastic backing of the F&P down to allow a better seal. I suspect that if your mask didn't leak your machine would not have to ramp up above 20, but I have no experience or knowledge of SV machines! If you go with the tight headgear you should be aware that the stretchy stuff gets looser in time, but it is cured by washing the headgear and air drying it (every 3-4 weeks). leave the velcro sealed to the straps or you will end up with the whole washer-load wadded together on your face!! I have gotten used to the tight fit of the head gear, but have never gotten used to the loose mask "farting" and "whistling", so I tighten the straps and sleep long and peacefully. WARNING! mask marks last for about an hour and a half, so get up plenty early before going out in public! Keep in touch!
_________________
| Mask: FlexiFit HC431 Full Face CPAP Mask with Headgear |
| Additional Comments: no humidifier |
Re: Newbie Can't Get Out Of The Gate/Mask Problems
Oh Beth,
Im so sorry you are having such an awful time of it.. but gosh, those high pressures.. thats like putting a newborn colt into the gate at the Preakness.
I would try to start lower too, and gradually get used to it..
still, that central apnea is a tough road to hoe, but one you absolutely have to conquer. Your body has suffered through a lot already, it got used to
your centrals, surely in time it will get used to the machine stopping them.
That blowfish storm is awful, and so unnerving and unatural! I do see that people can use nasal pillow masks at high pressures, and if it was me,
I cant stand full face masks either, I would do whatever it took to make a nasal pillow mask work.. I have even used little slim velour stretchy headbands
and put them against the front of my pillows mask to hold them in when I roll over.. it might help keep a high pressure in too..
Also, to prevent mouth leaks, I tape my mouth and put a quarter inch slit in so there is a bit a venting room.. to cough, or clear your throat, etc.
so I would....
take a deep breath, know youre in this for the very long haul..
practice while awake at the high pressures
wear the mask before you go to bed, and try to increase the time five minutes per night til you can get your pressures set down to a training
wheel level.. Yes, it wont give you optimum therapy, but what is happening now is going to end in disaster if you dont find some bit of comfort level.
Also, when you can get the pressures down, this is what I did..
I mean really, you have to make sense of this to your "sleeping" brain somehow, so...
I pretended I was a double agent spy, who was captured behind enemy lines... There latest torture device? the cpap!
They strapped it on me to get all the information they could, but I didnt give up anything!
Also one night, I pretended the room was filled with noxious gas and if I took of the mask I would instantly die..
I know that sounds crazy, but sometimes you have to do crazy crap to deal with crazy stuff!
Dont give up honey, I have had a big struggle too, its been five months, and I do see there is an answer for just about every problem, even though
every night seems like the last one you can handle it, you WILL have a break through.. but its probably going to be one tiny step at a time..
and maybe a few steps backwards before you get one forward...
I pretended to be a double agent
Im so sorry you are having such an awful time of it.. but gosh, those high pressures.. thats like putting a newborn colt into the gate at the Preakness.
I would try to start lower too, and gradually get used to it..
still, that central apnea is a tough road to hoe, but one you absolutely have to conquer. Your body has suffered through a lot already, it got used to
your centrals, surely in time it will get used to the machine stopping them.
That blowfish storm is awful, and so unnerving and unatural! I do see that people can use nasal pillow masks at high pressures, and if it was me,
I cant stand full face masks either, I would do whatever it took to make a nasal pillow mask work.. I have even used little slim velour stretchy headbands
and put them against the front of my pillows mask to hold them in when I roll over.. it might help keep a high pressure in too..
Also, to prevent mouth leaks, I tape my mouth and put a quarter inch slit in so there is a bit a venting room.. to cough, or clear your throat, etc.
so I would....
take a deep breath, know youre in this for the very long haul..
practice while awake at the high pressures
wear the mask before you go to bed, and try to increase the time five minutes per night til you can get your pressures set down to a training
wheel level.. Yes, it wont give you optimum therapy, but what is happening now is going to end in disaster if you dont find some bit of comfort level.
Also, when you can get the pressures down, this is what I did..
I mean really, you have to make sense of this to your "sleeping" brain somehow, so...
I pretended I was a double agent spy, who was captured behind enemy lines... There latest torture device? the cpap!
They strapped it on me to get all the information they could, but I didnt give up anything!
Also one night, I pretended the room was filled with noxious gas and if I took of the mask I would instantly die..
I know that sounds crazy, but sometimes you have to do crazy crap to deal with crazy stuff!
Dont give up honey, I have had a big struggle too, its been five months, and I do see there is an answer for just about every problem, even though
every night seems like the last one you can handle it, you WILL have a break through.. but its probably going to be one tiny step at a time..
and maybe a few steps backwards before you get one forward...
I pretended to be a double agent
_________________
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: sleep study: slept 66 min in stage 2 AHI 43.3 had 86 spontaneous arousals I changed pressure from 11 to 4cm now no apap tummy sleeping solved apnea |