Newbie: Hate Bipap machine so far won't use it...

[lacakid]

OK new to all of this but will cut to the chase........

Diagnosed with Severe sleep apnea... Got an Autopap machine (Resperonics). Tryed to use it, I could not get comfortable as when you inhale it's simple but the force to exhale got me flustered. It's VERY hard to exhale so I gave up, Apria didn't really care so I gave it back against Dr's wishes...

Went back to see my Dr who is board certified in sleep issues etc. and he changed me to a BiPap machine (Resmed). Supposively this machine is much easier to breath with, nope even though I think he has my settings at ?5-20? It is still very hard to breath out. Now I am with Lincair, like they really care if I use the machine as long as they can bill me

Just curious if this is the way it's supposed to be?? Are these things as hateful as everyone I hear state? I am using a nasal pillow mask supposively the least invasive because anything more and I am way too sensitive to know it's on me an can't sleep... I've read up on here way too many message for newbies and none so far seem to apply.

Please any links or response would be welcome.

Tom

[elena88]

hi there,
Im really sorry you have been around the bend with all this and have still landed in the frustration field..

I believe bipap is supposed to relieve the pressure on your exhale, you should notice a big difference.. if you arent, something is up.

I do not have a bipap, so I dont know, but I have had an apap for two months.. and I could NOT breath against it either when I started..
My settings were five thru twenty too..

It was one disaster after another, I cant believe I can say right now, that I slept last night, with my nose pillows in with the machine ON,
and I couldnt feel the air blowing inside of me, or even the nose pillows on me! Its so weird, after awhile, it feels like a part of you..


and this is from someone who packed up her machine a couple weeks ago to take it back to the doctors, and quit it all for good..

Someone will get on here soon with some good information for you.. probably ask you what your titrated pressure was, etc..


Bye coming here, you are on the way to being an excellent researcher, OSA slueth, and self advocate.. you are taking charge, good on you!

[jules]

if you hate the machine and are not willing to change that attitude, then you have set yourself up to FAIL

if you need help adjusting to the machine start with putting out a few questions - it won't be an easy task - some never get it - but you will join them soon unless your attitude changes where you DO WANT THIS TO WORK and WILL DO WHAT IS NEEDED TO MAKE IT WORK

oh your new best friend - give it a nice name - s/he is going to save your life

[elena88]

different styles of encouragment!

Okay, you know what.. I decided to keep going when someone asked me I wanted to have my family change my diapers
after I had a stroke from NOT wearing the cpap..


sometimes it takes a "spoon in your ear"

anyway.. dont give up!

[jules]

I do realize it was an oversight on my part but I didn't ask if the life insurance policy was paid up and the funeral arrangements were already made. I must be getting gentler in my old age.

[echo]

tough love.

So, lacakid, I assume you're here bceause you WANT to continue therapy, but are discouraged.

First off, please state your correct settings. If you don't know, then ask your doctor. Then get your hands on the manual and figure out how to find the settings yourself (ask help if you need more info).

Edit: please also give the exact and full name of the bi-pap you're using, there are various kinds.

Once you have started charge of your own therapy, knowledge = power, then please post your pressure settings. If you're on bi-pap, you will different inhale and exhale settings. What are those?

5-20 is not an acceptable answer, as that is either (a) the range on an auto (APAP) machine or (b) only the inhale settings for an auto-bipap.

So it's hard to give you any suggestions without knowing the exact settings and without knowing what you're "fighting against".

Also please get the tracking software. Without that you are "flying blind" so to speak.

While there is a lot of tough-love on this forum, everyone is also very supportive of those who want to take charge of their own health. That means we expect you to : do lots of reading, know how your equipment is set up & what the settings are, have a copy of all your sleep studies, and ask lots of questions. In return, you will find lots of knowledge , support , and advice here.

Not that your post is full of whine and cheese, but folks around here are pretty touchy about the "giving up" attitude.

p.s. Most of us LOVE our machines, either beceause we're so used to them now, or because they have saved our lives. And there are many here who use Bi-paps too, many that have struggled with other health issues. Giving up is not an option, but fixing the problem is!

[Wolfhound668]

I'd say stick with it. I went off cpap a few years ago because I wasn't tolerating the mask at all (almost every morning I'd wake up with it on the floor without remembering taking it off). I had a uppp done (major throat surgery) and was good for a while. A little (well more than a little) weight gain and I'm right back. I just started back three weeks ago and am still in the "when am I going to start feeling better?" phase but am serious about staying the course this time.

If you're having trouble exhaling you might talk to your provider about getting a machine with cflex (that's the respironics name for it, I'm sure resmed has their version but I use a respironics machine). The idea of cflex is that when you exhale it automatically drops the pressure a set amount and then increases again in the inhale.

It's been working great for me and I had a huge problem when I was being titrated and they had it in bipap mode.

Good luck.

[Slinky]

Whew! Going by your subject line and your ID my first thought was, yeah, good ID, you sound like a spoiled 3 year old brat.

It was good to read your post and realize that you at least have some interest and intent in giving PAP an honest try. We are all glad to see that. And good on you for sticking w/it and us a bit longer.

So lets start by getting it clarified just exactly which brand and model PAP you DO have. As I understand your post you have a Resmed - but it isn't clear just which model. S8 Autoset II, S9 AutoSet, VPAP Auto, VPAP Auto 25, VPAP S or ST, etc??? Or maybe even an S8 or S9 Elite w/EPR??

And then tell us just exactly which nasal pillows mask you are using. We have plenty of tips for achieving success w/the various nasal pillows masks.

These PAPs are NOT hateful!!!!!!! They are health- and/or even life-savers!

I would STRONGLY suggest that you request a copy of 1] the doctor's dictated results (1-2 pages each), 2] the full scored data summary report w/condensed graphs (5+ pages each) from BOTH your in-lab sleep evaluation PSG "and" your in-lab PAP titration PSG "as well as" a copy of your equipment order (script).

With those, you will then know just what you are working with in terms of sleep disturbances, pressure needs, etc. And w/that information we can probably help you to achieve PAP therapy success.

[FTGH]

Get used to getting mean replies here, dear. There's a small group of losers who have no life except looking for mean things to say to people who have sincere questions.

[Jaylee]

I am also on BiPap. Sure, it was hard to adjust to. Have you used your ramp feature, if your machine has one? I used it the first few times and that seemed to help me adjust. I had an easier time than most *don't hate me for that please * but please don't give up! Keep trying. Post your machine and mask info and I am sure one of these great resources here can help

[preemiern]

I really hope another new person has not left here because of a few rude replies. Jules--you need to remember where people are coming from when they come here frustrated and ready to give up...how much help do you think they are getting from the sleep med industry...dr and dme included. The OP is sleep deprived, scared of the new diagnosis, frustrated from the lack of help from the industry, and coming here looking for help and support.
To the OP--please don't be scared off by a few of the grumps here...we are here to help and to encourage. One of the first things I would question about your bipap is whether or not it has been set up correctly to work in bipap mode, because with a bipap you should have noticeable relief on exhale. So that would be my first question. Once we know what machine you have, we can walk you through checking your settings to make sure it is set up properly. The second issue is, if your inhale pressure is set up to range from 5 - 20, that sets you up for failure right from the start, because a pressure of 5 is too low to comfortably breath with a mask or pillows on your nose. It will leave you feeling like you can't get enough air in, and that is a scary feeling. So we need to know what your prescribed pressures are, and help you get your settings to a more optimal level.
I would like to encourage you to stick with your therapy. Sleep apnea is a serious chroninc disease, and it can lead to heart attack, stroke and death, so giving up on it is really not an option. Stick with it, come here for answers, and we will do what we can to help you.
Please let us know what machine you actually have, and lets start by looking at your settings.

[kteague]

Hello and welcome. I certainly understand how it is to be struggling and feeling like this is not doable. I quit a few months in but my declining health and fear of what was happening in my sleep drove me online and here. (With your apnea being severe, that should be a motivator for you.) I got more productive suggestions here in a couple days than I had from my former doctor in all those months. As others have said, the more precise info you can give, the more targeted replies you can receive to help you work thru any improvements in your experience. I just want to offer a bit of encouragement about the intensity of the pressurized air. I wish I had a nickel for every story I've read on here in the last 4 years (mine included) about the time coming when the sensations became so familiar we had to lift the mask to make sure the machine was still on. Now, granted, my pressure is only 12, so I can't speak for those with high pressures, but a friend of mine told me he had the same experience recently, and his pressure was 20 at the time, and he's on a bilevel. Everyone's experience is different, but there are some commonalities. Oh, there's always exceptions, but I would venture to say you can fully expect a significant improvement in your tolerance of this treatment if you continue to seek answers and commit to "fake it till you make it". Just saying to embrace the treatment with all its quirks as a blessing, though yet very much in disguise. It took me a very long time to tolerate the treatment, but once I knew (based on data) that it was working, I kept trying even though I was largely unsuccessful by anyone's definition. I couldn't keep it on long, but I would would get up and stay up most of the night rather than lay down without it. I didn't allow myself that option, as I knew I'd take a quick ride down that slippery slope. The need for sleep finally began to win over my intolerance of the treatment. Every night when I strapped the mask on and turned on the machine, I fully expected that this could be the night it got better. And you know what, that time did come. I am ever so grateful both for those who encouraged me and for those who admonished me. The queen of excuses was left without excuse, and daggone if I didn't succeed in spite of myself! May you too be convinced that you WILL succeed. Call it being able to give in to it, or call it mastering it, whatever works for you.

[lacakid]

I went to see my Sleep Dr. today and complained about the pressure and my dislike,,,, what he did is adjust the machine to 7 inhale and 4 exhale, it seems a little better just in 2 minutes of trying it and I think it's also adjusted with a 10 minute ramp up. In my wildest dreams I could not see myself with a full face mask, I get paranoid and things go through my mind, like what happens if I loose power? Also full face mask you are completly 100% trusting the machine and I am sure the death rate is way less then 1% from malfunctions but I am way too paranoid to try that.

The 2 masks I have are The Nasal Pillows and the (not 100% sure) the Mirage.

I will try it tonight and yes I will have the therapist so what she can do if I don't like it, I mean they want to sell it to my insrance company so they should make me like it :

I'll keep at it and see what more I can do...

Thanks for your help! It's much appreciated.

It's a VPAP Auto 25

[lacakid]

Resmed - VPAP Auto 25 With Humidifier

They gave me 2 masks: ResMed Swift LT & Mirage Micro

[kteague]

Glad you are moving forward. You'll figure things out. I am a bit perplexed though. Most don't get a bilevel unless they require a higher pressure or have some special need. What was your titrated pressure? I just would hate to see your pressure be set so low to accomodate your sensitivity to the air only to cause your apnea to be undertreated. With your machine you should be able to check your numbers as long as you do it before noon. Hopefully someone familiar with this machine will come along with instructions so in the morning you can write down at least your leak rate, AI and AHI from the screen and report back here. That will be a very good start.