Newbie here

First, I'd like to say HELLO to everyone.

Some history about my trials and tribulations with CPAP...


I've been on CPAP for about 1-1/2 years, on and off for various reasons. Last winter I had a sinus infection that came back or got worse every time I resumed using the CPAP (I only have a nasal thing with pillows) so I just quit using it for months. Finally, after a round of antibiotics the sinus infection went away but I still didn't use the machine for a long time. I eventually started feeling guilty and decided to try again. I make it thru almost the entire night now, most nights, with the headgear on but I NEVER sleep all night.

I have always waked to pee 3-4 times a night, and nothing has changed there, even with CPAP. However, after reading the peeing thread here, I think it might be that I'm waking up because of problems with my nasal headgear, and urinating while I'm awake, as others have stated.

My problem seems to be that I can't keep my mouth shut
I wake up with my mouth and throat so dry it hurts...I now think this is the real reason I'm waking up, and not that I have to pee. I tried a chin strap, it's a cheap one that won't stay in place, but my mouth comes open anyway or I just have a blowout thru my lips. I also wake up having weird dreams about funny noises and annoying sounds, that I later realize were actually my lips vibrating or my mouth being wide open. Not only does it bother me that these noises and dry mouth wake me up, but I know the CPAP can't be working if I'm not pressurized.

After seeing the pics of the Respironics chin strap it looks like it would solve the problem of it staying in place, but I think I would still have "lip blowout". So, I think I'll try a face mask because I know I need to get this resolved and I really don't want to go back to the doc. if I don't have to. Which is another problem I have....the doctor that I originally saw does not work for the same pulmonary organization and is not a participant in my Ins co's network. So I have to start over as a new patient any way I go....

I rarely go to the doctor anyway so anything I do will only go against my insurance deductible....which is why I decided to try to work out my problems myself....which is what led me to this forum. I'm really not cheap and I will spend what ever it takes to fix things....I just hate to waste money unnecessarily.

After all my rambling........
I do want to thank those of you that hang around here to answer questions and offer advice for those of us that don't have this stuff mastered yet! I'll keep reading and learning.

Is there any way you could get a machine with c-flex or an autopap? I've also been on straight cpap for about 1-1/2 years, and still had problems. The pressure would blow my lips open several times during the night. I finally broke down and bought the apap w/c-flex and have found that it helps me. The lower pressure on exhale means that my lips stay closed most of the time. I also added heated humidifier, which I didn't have before. My mouth isn't dry in the morning. I stopped waking up 2-3 times during the night to go to the bathroom - went down to once almost immediately, and last night I didn't wake up at all. It may not work for everyone, so see if you could rent one from a local DME for a week or two. And I had to play around with the settings a little bit. The manual suggested starting c-flex at 1, which didn't work for me. I had to move it to 2 to feel right. And the manual suggested starting the humidifier at 2, which I found too high. After a year and a half of no humidification, the warmth on 2 was too warm, so I dropped that to 1 - just enough to keep a little moisture coming in.
Everyone is different, but the doctors and DMEs seem to subscribe to the "one size fits all" philosophy. I hate to say it, but you really have to take charge yourself, and try different machines, masks, whatever, until you find out what is correct for you. And it probably won't be exactly the same as what is correct for me, or anyone else.
Debbie

Hi,

Snoozin' has great advice and insights! I would also emphasize the heated humidifier, regardless of the machine or mask you end up with. It will help all situations. Snoozin' is right about taking control of your health yourself. It's great you're getting back into it. Just keep it up and don't give up. I do OK with the mask, but I worry about when I get a stuffed up nose, so I'm considering getting a full-face mask if just for that situation alone. Anyhow, welcome. You might consider registering here as a member. It's easy and gives you a few features that might be of help to you. I'm sure all of us here hope you keep in touch and let us know how things work out for you.

Linda

I am on autopap. My starting press is only 5-6. Titrated for 14. IF I get to 14 during night I don't know, I do have the software program, but have to get another degree other than English to figure it and the C/D out. But anyway, I insisted on the htd humidifier, as my titration study was without and my sinuses were like I don't know what. I set the htd. humidifer on before going to bed, but unlike other posters, can't stand that max htd. humification. I leave it on about a 2-3 (not sure if this is in ''%" or just a numbered setting, which the loaner I have goes up to a 7 I think). Also the loaner htd humidifier has a no-heat-humidification setting, which I think, I may be wrong is called passover. My low htd. humidification sounds low to some, but I find it ok. My mouth and nose are not dry in the morning, so I think the htd. humidification setting is a personal thing. One night I forgot to turn it down upon retiring and my nasal pillow was DRIPPING with water, well that didn't last too long with me. So now I know to set it lower, the htd. humidification.

It seems to be a ''must'', and also I have Autopap, which seems ok to me. I only have the "DOG" to judge from the titration study and that was one old bomb of a machine, but in a clinical setting, what can we expect..........? One size has to fit all I guess for the study..........

Anyhow, maybe with htd humidification you'd certainly feel better, esp. if you are in a climate and have heat on, which is drying enough. I also use a large humidifier in the bedroom itself. Maybe these ideas can help you
?

Anonymous wrote:First, I'd like to say HELLO to everyone.

Some history about my trials and tribulations with CPAP...


I've been on CPAP for about 1-1/2 years, on and off for various reasons. Last winter I had a sinus infection that came back or got worse every time I resumed using the CPAP (I only have a nasal thing with pillows) so I just quit using it for months. Finally, after a round of antibiotics the sinus infection went away but I still didn't use the machine for a long time. I eventually started feeling guilty and decided to try again. I make it thru almost the entire night now, most nights, with the headgear on but I NEVER sleep all night.

I have always waked to pee 3-4 times a night, and nothing has changed there, even with CPAP. However, after reading the peeing thread here, I think it might be that I'm waking up because of problems with my nasal headgear, and urinating while I'm awake, as others have stated.

My problem seems to be that I can't keep my mouth shut
I wake up with my mouth and throat so dry it hurts...I now think this is the real reason I'm waking up, and not that I have to pee. I tried a chin strap, it's a cheap one that won't stay in place, but my mouth comes open anyway or I just have a blowout thru my lips. I also wake up having weird dreams about funny noises and annoying sounds, that I later realize were actually my lips vibrating or my mouth being wide open. Not only does it bother me that these noises and dry mouth wake me up, but I know the CPAP can't be working if I'm not pressurized.

After seeing the pics of the Respironics chin strap it looks like it would solve the problem of it staying in place, but I think I would still have "lip blowout". So, I think I'll try a face mask because I know I need to get this resolved and I really don't want to go back to the doc. if I don't have to. Which is another problem I have....the doctor that I originally saw does not work for the same pulmonary organization and is not a participant in my Ins co's network. So I have to start over as a new patient any way I go....

I rarely go to the doctor anyway so anything I do will only go against my insurance deductible....which is why I decided to try to work out my problems myself....which is what led me to this forum. I'm really not cheap and I will spend what ever it takes to fix things....I just hate to waste money unnecessarily.

After all my rambling........
I do want to thank those of you that hang around here to answer questions and offer advice for those of us that don't have this stuff mastered yet! I'll keep reading and learning.

Hi Guest,

Welcome!

I seem to remember a thread where someone taped their lips -- I think that it was Rested Gal -- you may want to register and PM her.

As for the sinus problems -- I have them too and it has been much better with the CPAP and heated humidifier. I also use an nasal spray antihistimine (ask your doc) and Nasonex, a nasal spray cortisone (again, ask your doc). The final piece for me is a saline gel that I put in my nose if it is annoyed from the mask or too much dryness. It was very dry (low humidity) in California before I left, and it does a good job of remoisturizing and soothing.

I have pressure of 14 and feel like my lips are vacuumed shut, so that is not an issue for me -- I don't know it is the pressure or the weird feeling that I have if my mouth is open. That is probably why the recollection of a thread is vague. I am 100% compliant, and feeling better every day -- I've been at this for a month now. The getting up at night has also ceased (and I used to get up from 2-6 times/night).

I am using NasalAire II, which I like -- & definitely use the heated humidifier! I have noticed that I need the humidity higher in California than in Hawaii. I have experienced rainout here in Hawaii and turned the humidity down by 1/2. I currently have a straight CPAP -- ResMed S7 Lightweight (Not! It weighs 5.7 lbs w/o the humidifier -- 10 lbs w/ the bag, hose, etc.). I have ordered a PB420e w/ humidifier and am waiting for it to ship -- then I will mail my old "Lightweight" home and carry the 420e back (I believe that it will be about 5 lbs with bag, hose, humidifier, etc.).

Good luck -- and don't give up -- once you get the right combination, you will feel better!

Aloha,

Jane

Well, I did register before making my first post........??? Don't know what happened there. (I'm the GUEST that started this thread).



I do have a heated humidifier that I used for a couple of months...I couldn't tell any difference so I quit using it because it just caused more work.

I'll see if I can rent a more modern machine and try it out before I start buying things....thanks for the advice. I think I'll also give the humidifier another try since I'm renewing my efforts.