brand new

[missbobbie]

Hi everyone,

So happy to have found this group. I'm totally and completely freaked out and trying to get a grasp. My mom lives with me and is pretty much telling me I'm stupid and need to get over myself and just put the **** thing on and use it. It's for my health. My pulmonologist told me that others with lung disease like me have trouble adjusting and i have to "fight through" it to get better. I don't have much fight left in me. Maybe yall can help me find it. I just got my machine yesterday. I feel like I'm suffocating.

The machine is and Aircurve 10 - has heated humidified and heated tubes (which nurse lady said was good). i ended up with full face gel thing, but i'm not good with things touching my face, and even with the ramp up thing i feel like i'm suffocating trying to breathe with the thing on my face.

Here is what my sleep study said:
no cardiac events
sleep efficacy was abnormal with both REM and Delta sleep being less than expected
5 leg movements per hour that didn't wake me
oxygen dropped to 75% - called hypoxemia
severe AHI - 116.7

I think all that was pretty bad at least from what i'm hearing.

They tried every mask in the place yesterday, and I had difficulty breathing with all of them (feeling like i was suffocating). I ended up coming home with the least evil feeling mask that goes under my nose and covers my mouth. the nurse lady said i have a tiny nose/mouth area and that makes these machines more difficult (of course, leave it to me to have the wrong size of features).

I've been googling today (which is where i found this great group) and see that i should try wearing the stupid thing watching tv or reading a book or something like that while i'm awake - gonna try that and see if i can desensitize myself somehow. i've read through several posts and some people put the thing on and never look back, some change masks and do fine, and still others struggle forever. i hope i don't struggle and i want to have a positive attitude, but i'm really struggling. i've always been a healthy person until this year for some reason, and now i'm diagnosed with lung disease and apparently my immune system is overreacting to allergens and causing uncontrolled asthma and a cough that won't stop and shortness of breath - and i have this severe sleep apnea on top of all the rest -- i've only been seeing the pulmonologist a couple of months and it's been test after test after test and here do this drug - and oh you'll need 2 shots a week for the rest of your life - oh and sleep with a machine that suffocates you - in a very short amount of time.

ok, i'm done with my novel - please help - or just encourage me - or something - not even really sure what i'm asking, but, like i said, i'm pretty freaked out and not sure where to begin

[Pugsy]

Welcome to the forum.

What are your pressure settings...and are you using the ramp feature?

Go here and get the clinical/provider manual for your machine...request it via email. Instructions on the page about 2/3 down.
https://www.apneaboard.com/adjust-cpap- ... tup-manual
It will tell you how to get into the clinical setup menu area where you can see all the settings.
Tell us what they all are.

What kind of lung problem do you have?

Is your main discomfort from not being able to exhale or do you feel like you are suffocating from lack of air?

Have you tried just using the machine while watching TV or reading and under no pressure to go to sleep?

[nicholasjh1]

Yes the whole suffocating thing may be because the pressure is set to "doctor's standard" of "4" (many give autopap and set it from 4-20 range thinking the machine will do all the work). and 90% of people feel like they're suffocating a 4 pressure, and in addition with severe apnea it's unlikely (though possible) that a minimum of 4 is even enough. I haven't actually even heard of anyone who is satisfied with a minimum less than 6. the whole 4-20 thing is just docs being a bit lazy and thinking the machines are "advanced enough to take care of it" but 4 pressure is rarely sufficient.


To address your other worries.. it can be hard... but getting good therapy is like night and day, who knows it may even help your whole allergy issue.

[clenchingtobreathe]

I am so sorry that you are experiencing what many of us have (and ARE) going through...but I can give you THIS assurance. It gets better...even if it's slowly. The freakout is the not knowing what to do to MAKE it better, so stay in this group and REALLY pay attention to those here who are educated about apnea and CPAP. Follow their advice and instructions. Most of us have found doctors and DMEs to be useless, so this is the place to educate yourself about it all!
PS>>>>tell your mom to hush. What you're going through is not a breeze!

[zonker]

My mom lives with me and is pretty much telling me I'm stupid and need to get over myself and just put the **** thing on and use it. It's for my health.

welcome aboard! yeah, that's easy for HER to say, she doesn't have to wear the *** thing!

about the mask, it's prolly the hardest thing to get used to and hard to find what works for you. it's such a personal choice. what works for me might not work for thee.

keep coming here and the experts will help get you dialed into your therapy.

good luck!

[Julie]

The 'suffocation' is most likely NOT the fault of the mask but as the other poster said, the fact your pressure settings are likely set too low to breathe at - and we can help you fix that quickly, but because I'm not as familiar with your machine as others are, I'll leave that for now, but please, please tell us what the prescribed settings are - the ones now programmed into your machine.

[palerider]

Hi everyone,

So happy to have found this group. I'm totally and completely freaked out and trying to get a grasp. My mom lives with me and is pretty much telling me I'm stupid and need to get over myself and just put the **** thing on and use it. It's for my health.

Well, she's not wrong.

the stupid thing

Your negative attitude towards it hurts you.

You start out thinking it's a stupid thing, and nothing, (short of an impossible miracle) is going to make you happy with it.

now i'm diagnosed with lung disease

What lung disease? sleep apnea is a malformed throat disease, nothing to do with the lungs. Or are you referring to the asthma?

please help - or just encourage me - or something -

I'm glad you said "or something" since my version of help often seems like the clue-by-four upside the head... If you don't want my "or something", just let me know and I'll go torment someone else *offers a hug*

[missbobbie]

Thanks everyone (even the tormentor). I'm at work now, but will check the setting when I get home and let you know.

The way the doc described my lung disease to me was that my immune system was hypersensitive to allergens (and i'm allergic to a LOT of things) and it was driving uncontrolled asthma. I've had a dry cough and breathing trouble since August. My pcp first thought it was bronchitis, but after my 3rd bout of this bronchitis and the steroids not helping, she referred me to a pulmonologist who initially thought interstitial lung disease, but she has since said it's not that, it's lung disease from the uncontrolled asthma and allergies. The sleep apnea is just an extra added bonus for me. I don't believe the two are related, but I've had so much information thrown at me, I'm really not sure which end is up anymore.

The machine does have the ramp feature and i can't get past the ramp to the other pressure yet. When they were doing the sleep study, i couldn't breathe and the air pressure felt like it was blowing my face away. I did manage to get to sleep once and woke up unable to breathe and ripped the mask off - the lady said she was adjusting my pressure and that's what caused me to freak out then. From that point, every time I would get still, she would apparently adjust the pressure and I would rip off the mask unable to breathe. Like I said, I'll check the pressure settings when I get home.

My mom used to use a cpap 100 years ago so she's the expert and I know nothing (at least that's what she thinks). She had weight loss surgery (and yes, I'm overweight and planning on surgery next year if my lungs get healthy enough - right now pulmo says I can start the process, but she doesn't approve of the surgery yet).

I have the worst time with exhaling, and seem to do a little bit better when inhaling (if that makes any sense)

I haven't yet tried using it watching tv or awake, I just googled these "desensitizing" things to do like watch tv with it on today -- gonna try some of the suggestions I found and read in here tonight. I'm still not so sure I'm ready to put this thing on my face and try to sleep again.

Thanks again for yall taking time to answer me.

[Pugsy]

Get me those settings...including what the ramp settings are doing...and I might be able to figure out something to help you exhale.
I will want you to try it while awake and under no stress to sleep at all.
Let's get you breathing comfortably with the machine first...worry about sleep later. We can't sleep so great if we aren't comfortable.

[missbobbie]

You're the best!!!

[Okie bipap]

Welcome to the forum. I have been treating my asthma for over 25 years and sleep apnea for around 3 1/2 years. Once I got my sleep apnea under control, my asthma seemed to be less of a problem. Wishing you the best in your treatment of both conditions.

[Julie]

There's a feature in your machine (I believe) that allows you to get relief when exhaling... again, not my machine, but I'm a bit surprised others haven't mentioned it...it's usually a quick, relatively easy fix so hopefully someone will tell you about it.

[Pugsy]

There's a feature in your machine (I believe) that allows you to get relief when exhaling... again, not my machine, but I'm a bit surprised others haven't mentioned it...it's usually a quick, relatively easy fix so hopefully someone will tell you about it.

The ResMed bilevel machines...AirCurve 10 which I believe the OP has in the profile don't have EPR available on any of their bilevel machines as a separate setting to turn on and set or choose.
Instead the PS (Pressure Support) is used to aid in exhale relief and that along with some of the available timing settings will allow for easier exhale.
EPR is essentially PS with limits..1, 2 or 3 cm but that's as high as it can go.
We can do the same with PS..1 or 2 or 3 and greater differences between inhale and exhale if needed.
Think of PS as EPR on steroids.

So the reason I didn't mention EPR is because the machine (AirCurve 10 or any ResMed bilevel machine) doesn't even have EPR available at all as a choice. Not even if someone were to use it in fixed cpap mode. No EPR anywhere.

Once I know what the current settings are ...then I can come up with an idea to add in more exhale relief but I need to know what is being used now first.

[palerider]

There's a feature in your machine (I believe) that allows you to get relief when exhaling... again, not my machine, but I'm a bit surprised others haven't mentioned it...it's usually a quick, relatively easy fix so hopefully someone will tell you about it.

It'd save other people time if you didn't talk about things that you don't know anything about.

The OP can't use EPR because her machine does not have it. That's why others haven't mentioned it.

[missbobbie]

Ok - i tried all the "desensitization" crap er i mean techniques - tried to fix my attitude and put the thing on last night - omg my face hurts so badly today - and feel bruised and swollen - not sure if i had too tight or what - i coughed worse than usual all night and my cough is just awful today
BUT
I wore the thing 8.5 hours and it only took me forever to go to sleep
I dont feel any better today
Oh and i got the settings - not sure what you want so here they all are

Mode s
Ipap 20
Epap 15
Easy breathe on
T1 max 2.0s
T1 min .3s
Trigger med
Cycle med
Mask full face
Ramp 15
Start epap 7.4
Climate control auto
Tube temp 81

Then some other stuff that seemed irrelevant to me