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I'm cranky 'cause today I feel horrible, so please bear with me.
Today's the 18th, Monday. On Thursday I saw my DME because I was feeling worse and worse, sleep had decreased significantly over a period of time (from 6-7 hours to 4-5 hours every night).
He ran my data card = I had a massive leak due to mouth breathing (I love the mask I had--NO leaks and very comfortable but knew I was mouth breathing due to extremely dry mouth q a.m.). SO, since I was due for a new mask anyway, he suggested I try a full face mask. I was admittedly leery, thinking it would be claustrophobic, which it wasn't, even in the DME office.
Came home, have used it nightly since. First night 7 hours sleep. Second night 7 hours sleep. I was lovin' it! Mask was comfortable, no leaking, and SLEPT, better than before.
Saturday night, sleep was down to 6 hours. Last night the machine was acting up in some way. I went to sleep initially per usual and slept for awhile soundly. Then about 3 hours in I woke up and realized the machine wasn't running. Hit the button, it started up fine. Went back to sleep.
Long story short, I was back and forth with the stupid thing the rest of the night, ended up sleeping, probably a total of 4 hours. Also, the mask was weird for the first time. Seemed to be leaking from different places at different times. I was constantly having to mess with it. The machine was running off and on; mostly it seemed to be on ramp speed (which I only use once when initially going to sleep). At times it was running full steam, at other times, it clearly was blowing way too slow.
I have a call in to my DME. There's definitely something wrong with equipment somewhere. I know I got poor quality sleep 'cause I feel like crap, have a bad headache (unusual for me).
I really like my DME and he provides good service. However, I know he exchanges parts in machines, etc., which has never caused me a problem. This is the same machine I've had from the beginning. It's NEVER acted up like this. AND I don't understand why a new (?) mask that was working fine for 2-3 nights, suddenly started leaking like a sieve.
My question is--what should I ask DME for when I see him?, which I'm pretty sure will be later today. I feel as though there's SOMETHING I need to insist on, but I don't know what it is.
Any thoughts on this??? I sure hope so, 'cause I haven't had effective CPAP results for some time, first because of mouth breathing (which I didn't realize were CPAP leaks!), and second, I just want to get this crap under control. I'm 100% compliant but it's not doing me a damn bit of good if the equipment's not working right.....
Will appreciate anyone's ideas about this. I'm feeling clueless, for the first time in several weeks now.
Susan McCord
Today's the 18th, Monday. On Thursday I saw my DME because I was feeling worse and worse, sleep had decreased significantly over a period of time (from 6-7 hours to 4-5 hours every night).
He ran my data card = I had a massive leak due to mouth breathing (I love the mask I had--NO leaks and very comfortable but knew I was mouth breathing due to extremely dry mouth q a.m.). SO, since I was due for a new mask anyway, he suggested I try a full face mask. I was admittedly leery, thinking it would be claustrophobic, which it wasn't, even in the DME office.
Came home, have used it nightly since. First night 7 hours sleep. Second night 7 hours sleep. I was lovin' it! Mask was comfortable, no leaking, and SLEPT, better than before.
Saturday night, sleep was down to 6 hours. Last night the machine was acting up in some way. I went to sleep initially per usual and slept for awhile soundly. Then about 3 hours in I woke up and realized the machine wasn't running. Hit the button, it started up fine. Went back to sleep.
Long story short, I was back and forth with the stupid thing the rest of the night, ended up sleeping, probably a total of 4 hours. Also, the mask was weird for the first time. Seemed to be leaking from different places at different times. I was constantly having to mess with it. The machine was running off and on; mostly it seemed to be on ramp speed (which I only use once when initially going to sleep). At times it was running full steam, at other times, it clearly was blowing way too slow.
I have a call in to my DME. There's definitely something wrong with equipment somewhere. I know I got poor quality sleep 'cause I feel like crap, have a bad headache (unusual for me).
I really like my DME and he provides good service. However, I know he exchanges parts in machines, etc., which has never caused me a problem. This is the same machine I've had from the beginning. It's NEVER acted up like this. AND I don't understand why a new (?) mask that was working fine for 2-3 nights, suddenly started leaking like a sieve.
My question is--what should I ask DME for when I see him?, which I'm pretty sure will be later today. I feel as though there's SOMETHING I need to insist on, but I don't know what it is.
Any thoughts on this??? I sure hope so, 'cause I haven't had effective CPAP results for some time, first because of mouth breathing (which I didn't realize were CPAP leaks!), and second, I just want to get this crap under control. I'm 100% compliant but it's not doing me a damn bit of good if the equipment's not working right.....
Will appreciate anyone's ideas about this. I'm feeling clueless, for the first time in several weeks now.
Susan McCord
Views: 39
Replies to This Discussion
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Permalink Reply by Ralph C. Stewart on
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Susan,
Sorry to hear about your troubles. I completely understand the frustration. It does sound like you machine needs "checking out". I hope it is not a case of the car runs fine when you take it to a mechanic. As far as your full face mask. I hyad the same thing happen to me. Got the mask, it was fine for a few nights and then started to leak. You may need to change...that is what I had to do. Have you changed settings recently? I had a couple of bad nights recently too. For me, sometimes I will have a couple bad nights and have to get really tired to get a good nights sleep with my cpap. Let me know if you find out anything today.
Ralph
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Permalink Reply by susan mccord on
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Hi Ralph--thanks for the speedy response. I appreciate it.
I've been on CPAP for 4 months. Once adjusted, I really haven't had much difficulty. Did have a pressure change to 10 but that was 9/1/09. No problems with it, even early on.
I'ts a mystery to me. When it happened to you, did you change to a different full face or go back to a nasal mask? I loved my previous mask, which I still have--it NEVER leaked and was totally comfortable. But I was mouth breathing so much that I was losing at least 65% of my CPAP benefit. Can't be doing' that!!
I'll definitely let you know what I find out. I'm kinda disappointed with this ff mask. I've really liked it--not as much as my prior mask, but it's really okay. Till last night anyway. As for the machine, I have no idea.........
I'm gonna send you a friend request. If you don't like to do that, just ignore me!!! :-)
Susan McCord
Ralph C. Stewart said:Susan,
Sorry to hear about your troubles. I completely understand the frustration. It does sound like you machine needs "checking out". I hope it is not a case of the car runs fine when you take it to a mechanic. As far as your full face mask. I hyad the same thing happen to me. Got the mask, it was fine for a few nights and then started to leak. You may need to change...that is what I had to do. Have you changed settings recently? I had a couple of bad nights recently too. For me, sometimes I will have a couple bad nights and have to get really tired to get a good nights sleep with my cpap. Let me know if you find out anything today.
Ralph
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Oh jeez, Ralph, we're already friends. I looked at your picture and remembered immediately.
Just chalk it up to old age or apnea fog, whichever is more appealling to you!!!
Susan :-)
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Hi Ralph--just wanted to update you re: my DME visit today. You were so kind to me about last night's equipment debacle and I want to thank you for that.
Long story short---my machine was malfunctioning. My DME guy, who is great, always, didn't blink an eye. He gave me a new one. I asked him about the mask leaking and also about the fact that several times when I woke up the mask was in my mouth instead of against my chin. He said it was likely because my machine wasn't putting out the proper amount of air, and that when it actually stopped running my instinctive response, even though still asleep, would have been to pull it up so I could breathe through my mouth. That also accounts for the mask leaking 'cause it was being moved around all night.
He re-fitted the full face mask to be sure, hooked it up and put me back in his big recliner to check it out. It was fine. No leaks whatsoever. So I think I'm good to go. Glad to have a new machine. I didn't like knowing the other one could just stop running!!!
Thanks again for your kindness and concern, Ralph. I'm glad you're on SleepGuide.....
Susan McCord :-)
Ralph C. Stewart said:Susan,
Sorry to hear about your troubles. I completely understand the frustration. It does sound like you machine needs "checking out". I hope it is not a case of the car runs fine when you take it to a mechanic. As far as your full face mask. I hyad the same thing happen to me. Got the mask, it was fine for a few nights and then started to leak. You may need to change...that is what I had to do. Have you changed settings recently? I had a couple of bad nights recently too. For me, sometimes I will have a couple bad nights and have to get really tired to get a good nights sleep with my cpap. Let me know if you find out anything today.
Ralph
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Permalink Reply by RockRpsgt on
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not to add to your day's agaony Susan but today was Monday the 19th. just didn't want you to be a day off all week. i really hate it when that happens. Who is you DME? Being in the same area i would like to have a good local guy to referr patients to. Have you gone to the St. Francis AWAKE meeting.
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