another newbie needs help / encouragment - difficulty

[mgrunk]

So, I've had an intellipap auto - set at 6 - 10 and just finished my 4th night - I have at least 4.5 hours every night.

My 90th percentile is 6.5
95th - 7

I had 10 apnea / hypopneas (the report doesn't differentiate - I'm waiting to buy the updated software) last night

I have an optilife nasal pillow mask = but I'm having problems getting it seated correctly so that it feels like the air is going straight back into my nose instead of hitting the side of my nose. I tried a swift lt for her last night - and it fit better, but I woke up twice feeling like I was filled w/ air and basically having a panic attack and took it off. I'm prone to panic attacks anyway but every night, I've woken to that feeling.

This morning my chest hurts and still feels like I'm just filled w/ air.

The swift mask was more comfortable, but my cheeks get filling w/ air and when I'd swallow, my mouth popped open.

And, I hate breathing against the pressure - I think I'm a pretty shallow breather anyway - I have asthma, a coughing variety, and had learned that when I'm having a flare up, if I breathe more shallowly, I don't have as many coughing issues.

I bought the machine outright because the DME's wouldn't work w/ my. My pulmonologist is working w/ me.

I do wear it for about 30 minutes before going to sleep - I read a book w/ it on.

so, any suggestions?

[Janknitz]

Do a search for "aerophagia"--that's the problem you're having when you fill up with air. There are a few remedies around that help--positioning is one of them. I have less trouble if I remember to keep my tongue against the roof of my mouth.

Does your machine have some sort of exhalation pressure relief? That's really important when you have asthma--the airway restrictions from asthma make it hard to exhale in the first place, and even harder against pressure from the machine. Try using your inhaler before bed for a few nights and see if that helps too.

I tried the Optilife and could never get it adjusted properly. The Swift LT is much easier to use, IMHO.

I know you say deep breathing makes you cough more, but you need to clean out those lungs a bit--that's part of why you cough. I'd do some deep beathing practce during the day. You might want to try yoga breathing or look up Buteko exercises. You'll do a lot better with your asthma when you get better volume in your lungs. Otherwise, when you experience asthmatic constriction, you don't have much margin to keep the oxygen flowing.

My asthma has been much improved since starting CPAP.

[Irene P.]

I have an asthma cough also. It's nonproductive, just a cough in response to some irritation, so it is good to try to keep the breathing somewhat relaxed to avoid a coughing fit.

I found when I started xpap treatment that I was very tense, and I paid too much attention to my breathing. I finally learned to relax by focusing on something else (prayer, mantra, etc), and I was able to just breathe normally and forget about the machine and mask. Maybe this is something you can try.

The blowing out the cheeks, and then the mouth, might require some other steps. Some tape their mouths or use a full face mask to avoid losing therapy air. That's something you can figure out later. There are lots of threads on this site about that.

I wish you luck in working things out. It is really worth doing whatever it takes to get good therapy.

Irene

[cflame1]

I have asthma as well... couldn't handle the exhale relief on the CPAP and APAP that I started with. Had to turn it off.

[BlackSpinner]

This morning my chest hurts and still feels like I'm just filled w/ air.

Most of us have that the sore chest issue. Basically you are pushing against the air to exhale and your muscles just need to get used to that. It should go away in a few days.

The full of air issue is something different - you are swallowing air. Sometimes that clears up as well with time. try to sleep as much as possible almost on your stomach.

I think you should really consider a full face mask or a Hybrid.

[barbed15]

I have asthma as well, and have had this set-up since March; didn't know I could get one with more complete info. Anyway,
I had one 2 years ago & hated it so much that I took it back. I like the c-flex on this one, because the pressure goes down when you breathe out. I still have not gotten thru a whole night, but am noticing that I'm using for longer & longer periods without waking up.
Pulmonary doc recommended a full-face mask for me because of breathing issues, and stuffy nose; I now use a neti pot and a nasal inhaler before bed. And I notice that I'm feeling better! Not getting up 3 or 4 times a night to use bathroom was the first thing I noticed. The main thing was I was determined to keep trying this time; and I found this place! Yeah!!!
It will get better.

[mgrunk]

Thank you for all the replies - I did see on another thread about post nasal drip and aerophagia - and I think that may be happening - I'm swallowing more frequently because I still have a lot of post nasal drip. The surgery should have cleared it up, but I'm fighting it. I do lots of sinus rinses and just came off prednisone again, so my sinuses are pretty wide open. I just can't get rid of the extra drainage.

Like I said, last night was so stressful combined w/ the lack of sleep, that I'm feeling stressed now at the thought of sleep. I had the air pressure in my chest feeling sleeping in the recliner - I am going to try and take benydryl earlier in the evening in the hopes of drying things up. But, that also makes my lungs a bit more unhappy.

Also, I'll try the inhaler before bed. I haven't had to use it for a while. The reason I had sinus surgery was to help clear the asthma up - for me they are very connected.

My machine doesn't have any kind of c-flex - just heard the intellipap is suppose to come out w/ a new machine w/ some type of c-flex technology - drats that I've already bought a machine. Although, I probably couldn't afford it.

The list has been helpful - my initial setting for low was 4 and I just couldn't get to sleep at all w/ it - every time I'd just fall asleep, I'd wake back up. I seem to be doing better w/ the low on 6.

[mgrunk]

Oh, and I had my first case of rainout - crud, I didn't even have the humidifier on - I shook out a ton of water out of the tube - it was making a sloppy loud noise - woke me up out of sleep.

[Janknitz]

A heated humidifier reduces the chance of rainout. Maybe you need to have the humidifier on?

If that's causing other problems, try either warming up the room you're sleeping in, or putting a hose cozy on your hose. I made my own hose cozy--if you can sew a simple seam it's easy to do. Some people just wrap the hose with fleece or terry and tie it on.

You've got enough to contend with--you don't need rainout too!

[jweeks]

Oh, and I had my first case of rainout - crud, I didn't even have the humidifier on - I shook out a ton of water out of the tube - it was making a sloppy loud noise - woke me up out of sleep.

Hi,

In addition to Janknitz's suggestions, make sure that your machine is lower than your head. That way, the water can run back down into the machine rather than into your nose.

-john-

[elena88]

Hi there,
Im sorry to hear you are having such a go of it..

I did too, pretty much the same thing that is happening to you..

I have RAD reactive airway disease, and Im a very shallow breather too, so this was just a nightmare..

I couldnt breath against the pressure either, and I was filling up with air like a hot air balloon..

It got better in a few weeks, and now I cant even feel the pressure anymore..

Your lungs will get stronger, you wont believe how good youre going to get at breathing with it..

However, I did have to think some strange stuff to get through it.. I pretended to be a triple agent spy caught behind enemy lines..
(sidney bristo from the spy show alias) and I was being tortured with the apap machine... and I to take it or something horrid would befall
my comrades.. That is the only way I could make sense of it to my brain.. or I would have just quit, it was miserable, lets face it!
So be creative, distract yourself, watch tv, or play with your iphone, read, whatever, it will get better.

[mgrunk]

So, it makes more sense - thanks for all the sharing - I thought I was a bit off w/ my shallow breathing, so it's nice to know it is somewhat a typical way of handling asthma. I have to take a night off - I had sinus surgery 2 weeks ago, and one side just feels totally raw, like I can't handle anymore air being blown on it. I need to find a nasal mask to see if it's easier to deal w/. But, I'm self pay, so this will be my 4th mask.

I love the idea of pretending - I am way to aware of my breathing and the effort to get the air out. But, it's heartening to know that I'll get use to it and maybe strengthen my lungs up too.

The air seems to be triggering the post nasal drainage - so maybe a night off will help it settle down.