New to CPAP, my initial problems, any ideas?

[lynx]

Hi, I don't have much time or I would do a more thourough search of old threads to maybe find some clues or answers to my problems. I have a new CPAP, since last week, and I am desperate for it to work. You can see from my sig, but my perscription is a Respironic DS400HS pressure 7cm H2O with a Petite Opti-Life Nasal interface (mask) and a heated humidifier. If you know of relevant threads within which awesome advice has already been posted, I'm just as happy to have links to those as answers posted in this thread.

My problems so far:

1) I have rain out. Once it shot right up my nose, but mostly it sprays out the exit pores of the mask, all over my face, or once even my wife's. Even worse is when just a bit of moisture collects on these holes and whistles or hisses (this is very frequent as well). Right now I keep a dry wash rag near my pillow to try and wipe this off, but this wakes me enough that I have trouble sleeping. Our master bedroom is the coldest room in the house, really changing the temp in there would cost 100s more per month in natural gas. I bought some hose insulation and tried it last night as it was much better, but still very disruptive when it occured. I have my CPAP machine lower than my bed so much of the moisture surely runs down the hose, but obviously I still have a problem. I can only think maybe a space heater might help, but it's a very large room with a vaulted ceiling and while the walls are insulated well, the ceiling really is not.

2) When I slept in the sleep lab the 2nd time, to try out a CPAP and figure out a pressure, I woke up feeling odd, I can't honestly recall the last time I'd woken up feeling like that. The only thing wrong was that I wanted to sleep longer. I'd even slept on my back most of the night, which I haven't really done during my adult life. The first night I got my CPAP, despite the rain out, I woke feeling the same way. Now it's been less than a week and I am sleeping maybe 4 hours and can only manage to keep the mask on maybe 5-6 hours, despite being in bed for 8-9. I had one slight panic wake up in the sleep lab but was able to fight it down and sleep. Now I keep waking up feeling like I can't breathe, even though I can mechanically feel my breathing my brain is telling me I'm not getting any air. I force myself to try anyway, on both sides and my back, until I can't stand it anymore and rip the mask off for 30 minutes or an hour. Then I try again. I tried the pressure ramp button, but it doesn't seem to help. I have Flex on my machine, it's set to the middle pressure release during exhalation, I'll try the maximum one tonight and see if it helps. The panic attacks are getting worse and I am getting less able to fight them instead of more able. I found one thing about TERRAP online (http://www.terrap.com/) I don't know if that stuff would help. I don't have any real claustrophobia or any other phobia. I do have anxiety attacks from time to time, but this doesn't feel the same. Does anyone have any ideas for this, any exercises, anything?

3) When I am partially awake I am catching myself not breathing. The CPAP should be holding my airway open and I can feel the pressure, it's like I'm holding my breath and then jolting and gasping for air. This is a bit unnerving to me. I don't know why this would be happening and I plan on asking my sleep specialist. Until I can is there anything anyone knows about this? Why would my body do this? I have heard that you can still have apneas while using CPAP therapy but I always assumed that the airway was still closing when this happened, I don't think this is the case for me, but I don't know.

I've only had my CPAP for 6 days, I really want it to work. I see some minute changes, I can wait until 10 or 11 for morning coffee instead of drinking it as I get up and then again at 10 or 11. Even though I can tell that I'm only sleeping about 4 hours a night I feel just as rested as I did before at 7-9 hours with apneas 30 times an hour, but this still means I'm really exhausted. I could try exercise, probably only moderate for now as I am in poor shape, but more strenuous later. I should be doing that anyway, but I'm not feeling a vast increase in my energy levels, I just don't fall asleep on the couch after work while trying to play with my daughter anymore.

[ozij]

Rainout it a real problem when our pressure is low.

I use a heated hose: http://www.sleepzone.com.au (the price is in Australian dollars, they deliver all over the world)
I use a fleece wrapper on the hose
An I also use a fleece wrapper on the tube that connects my mask to the hose.

You can try lowering you humdity till you get the hose wraps.

O.

[danw61]

1) I have rain out.

Are you sure you need that much humidity? Try lowering the humidifier setting until the rain out stops.

2) Now I keep waking up feeling like I can't breathe, even though I can mechanically feel my breathing my brain is telling me I'm not getting any air. I force myself to try anyway, on both sides and my back, until I can't stand it anymore and rip the mask off for 30 minutes or an hour. Then I try again.

That can sometimes happen if the carbon dioxide from your exhale isn't all getting vented out prior to your next inhale. People often have that feeling if the pressure is set too low, like less than 6 or so, or if the epr or cflex has a high setting and brings the exhale pressure too low. But, with the settings you have I wouldn't think that would be the problem. Is it possible that you're blocking the mask vent in some way? A blanket or pillow blocking the vent? People do sometimes feel a bit cholostrophobic too, so that's possible as well.

3) When I am partially awake I am catching myself not breathing. The CPAP should be holding my airway open and I can feel the pressure, it's like I'm holding my breath and then jolting and gasping for air. This is a bit unnerving to me. I don't know why this would be happening and I plan on asking my sleep specialist. Until I can is there anything anyone knows about this? Why would my body do this? I have heard that you can still have apneas while using CPAP therapy but I always assumed that the airway was still closing when this happened, I don't think this is the case for me, but I don't know.

I think people often have different reactions while adjusting to using CPAP. Your body & mind aren't used to a leaf blower blowing air up your nose. I don't know if some of your problems are just temporary while trying to adjust to CPAP, or something more.

It sometimes takes several weeks to really get comfortable with it. Keep working on it. Something that really helped me was to use the machine in the evenings while watching TV or reading to help my body & mind get used to it.

Good luck & don't give up.
Dan

[Georgio]

Yeah, not knowing what part of the country you live in, if you have a cold bedroom you will have to do something to avoid that rainout. The Aussie Hose I read a lot about here and it sounds like a sure fix, maybe with a cover. I'm sure it's not an inexpensive fix, but we are talking about making important medical therapy work for you here, for a very long time. And you will be breathin temperature tempered air which I think I would like very much. You just have to tackle one issue at a time making adjustments untill you get everything right for you. This one you can probably quickly solve, and then move on to making therapy easier and easier. Good Luck.

Georgio

[AuntieNae]

With a 7 pressure, and c-flex on .. they might not be getting enough air with the pressure drop of c-flex during exhale ..which would also be the cause of some of the feelings.

[lynx]

Thanks for the responses so far, keep the good stuff rolling in. To respond to a few queries or points:

Are you sure you need that much humidity? Try lowering the humidifier setting until the rain out stops.

I actually have the humidifier on the lowest heat setting. I tried removing it completely from my setup, as my device allows, but the dry air was very uncomfortable, I had to remove my mask for my last 3 hours of sleep.

With a 7 pressure, and c-flex on .. they might not be getting enough air with the pressure drop of c-flex during exhale ..which would also be the cause of some of the feelings.

Hmm, I hadn't thought about the CO2 not escaping due to the reduced flex pressure, possibly I should try minimizing the flex pressure reduction instead of maximizing it first.

Yeah, not knowing what part of the country you live in, if you have a cold bedroom you will have to do something to avoid that rainout.

During winter here, it's 40-50 degrees F in my bedroom at night, yeah, I'm not giving up on this rainout thing, it's got to stop.

It sometimes takes several weeks to really get comfortable with it. Keep working on it. Something that really helped me was to use the machine in the evenings while watching TV or reading to help my body & mind get used to it.

That's an awesome idea, I may give that a shot, though the machine makes conversation all but impossible, I'm sure my wife would love it if I didn't complain about sappy TV shows anyway.

I use a heated hose: http://www.sleepzone.com.au (the price is in Australian dollars, they deliver all over the world)
I use a fleece wrapper on the hose
An I also use a fleece wrapper on the tube that connects my mask to the hose.

That is a good idea, before I order that thing, there's something I want to try, I'll let you all know how it works out.

[stejoel]

3) When I am partially awake I am catching myself not breathing. The CPAP should be holding my airway open and I can feel the pressure, it's like I'm holding my breath and then jolting and gasping for air. This is a bit unnerving to me. I don't know why this would be happening and I plan on asking my sleep specialist. Until I can is there anything anyone knows about this? Why would my body do this? I have heard that you can still have apneas while using CPAP therapy but I always assumed that the airway was still closing when this happened, I don't think this is the case for me, but I don't know.

I've been having this happen too but it also happened before I started using the CPAP. I notice it happens more often if I have to much caffeine or I'm cutting down on anti-depressant medication. I hate this more than any other sleep-related disorder.

[ozij]

Some people just can't stand C-Flex - the way C-Flex varies the pressure confuses their breathing, they try to synch with the C-Flex, the C-Flex in its turn tries to synch with them, and the result is a mess called breath stacking - and a (justified) sense of choking. C-Flex simply doesn't work for some people. Try turining it off entirely.

O.

[lynx]

Some people just can't stand C-Flex - the way C-Flex varies the pressure confuses their breathing, they try to synch with the C-Flex, the C-Flex in its turn tries to synch with them, and the result is a mess called breath stacking - and a (justified) sense of choking. C-Flex simply doesn't work for some people. Try turining it off entirely.

O.

I would, but you can't turn it off entirely on my model:(

[cflame1]

Thanks for the responses so far, keep the good stuff rolling in. To respond to a few queries or points:

Are you sure you need that much humidity? Try lowering the humidifier setting until the rain out stops.

I actually have the humidifier on the lowest heat setting. I tried removing it completely from my setup, as my device allows, but the dry air was very uncomfortable, I had to remove my mask for my last 3 hours of sleep.

Have you tried just not turning it on (still keep the humidifier attached and have water in it)? That still gives you humidity... it's just in passover mode.

[lynx]

Have you tried just not turning it on (still keep the humidifier attached and have water in it)? That still gives you humidity... it's just in passover mode.

I can't recall if my model allows me to do this. I'll double check again tonight. The hose insulation actually has the added benefit of making it far more comfortable to touch the hose to my skin, so now the several feet of hose closest to my mask hang out under the covers with my body heat. I only had one rainout problem last night.

Also, I lowered my C-Flex down to 1 (the closest setting to not having C-Flex at all) and had a much better night's sleep last night. I did not feel like I was suffocating except once and simply taking the mask off for 5 minutes allowed me to calm down and put it back on. I may ask my doc about find a way to turn off C-Flex entirely, but my machine doesn't allow this (I have heard the technician setup allows this, but I will wait for my doc to agree that it's okay, since I may find it bearable now).