I have been using a c-pap machine for the last few weeks, and went in to get it changed as I was having trouble breathing out against the constant pressure.

The lovely lady in charge listened to me, then decided to change the c-pap, from I think cflex to aflex, I can't be too sure about this, as I'm new to it all its all very confusing.
Well the change over worked wonders for a few days, no probs breathing out. Now I'm noticing I'm having trouble breathing out, and not wanting to use it because its so tiring, so havn't been.

I was wondering if anyone knows about the difference between the 2, and just how bad do you have to be to try out a bipap machine.

I see my specialist in March, he is a consultant physician, I see him for out of the ordinary things, like my not sleeping well and waking tired, and would like to go to see him full of information, he is willing to try things out, and willing to listen, but I don't want to look like an idiot.

Sorry its a long post, and thanks for reading it.
Kate

Hi Kate,

Sounds like you were switched from a CPAP to an autoPAP. The cpap delivers a constant pressure whether breathing in or out. The autoPaP also delivers the same pressure in and out but delivers varying levels of pressure over time depending on how much resistence due to obstruction it is detected. Regardless of where the pressure is both the inhale and the exhale get the same pressure and both ride up and down together according to the changes determined by the algorithm of the machine in reaction to the level of obstruction.

The cflex is a feature of the CPAP which gives a little bit (really almost unnoticeable) pressure relief for the outbreath. Aflex is the similar feature for an autoPap. Neither of those features ever helped me personally, it just wasn't enough help on the expiration. As a side note, I'll tell you that the autopap left me exausted too. In my case because it just wasn't really picking up on my breathing issues, it was looking for classic obstruction whereas, yes, I might have some obstruction issues but mostly I just simply didn't have the strength to do the neccessary work of breathing. My sleep doctor agreed with that assessment, so I'm not entirely crazy!

From my experience I would say that you need a bipap. This is a machine which sets two different pressures: one for inhalation and one for exhalation. So, it obviously will give you that nice relief of pressure as you exhale. I can tell you it's a wonderful, wonderful thing for mg'ers. Helps you breathe in, nothing to fight against on the breath out. I don't know what it would take for you to get it but this is the right machine for someone with mg. In fact the very day after I got my mg diagnosis I gave my sleep doctor a call and he rammed through the paperwork and got me a bipap very quickly. We had been waiting for that magical diagnosis though. Without that I'd have been out of luck. I don't know how it would work for you.

I really, really hope you have success in getting what you need. I used all three machines and they are all very different. I think you need the bipap. Because it's crazy to expect someone with mg to have to breathe out against pressure. We have a hard enough time as it is! Jeesh!

Anyway, good luck and go get 'em.

Ally

Hi Ally,

wow thanks for that so much info, and very well explained.
Yes I've noticed waking in the middle of the night when the pressure has gone up, so obviously thats my body saying "hey I can't do this!!"
I shall do some research on the net about bipaps in australia, as I'm not sure how/if/when you can trial them.
thanks again, you've really helped
Kate

Hey Kate,

I don't use either of these so I can't offer any advise. I just hope it all works out and you get some relief soon.

Hugs,
Pat

Ally,

it's amazing how very few pulmonologists understand what you have just explained.

it should have been so obvious that a patient with respiratory muscle weakness will find it hard to breath out against resistance, but I hear of so many MGers that are given a CPAP for sleep apnea without understanding this simple fact.

I know that even when my pulmonologist put me for a few hours on an autoCPAP, in order to see what my real resistance and pressures are (and not the presumed ones, that everyone before him thought they should be), it was so hard for me to breath, even though I was able to maintain a good CO2 and O2 level throughout the entire test , that it was such an enormous relief when he put me back on my bipap (with the proper pressures) after that.

and it is a bit of a comfort to know that I am not the only one that has experienced that. even if theoretically it makes sense.

this illness is such an untravelled land.

alice

Hi sweetheart! How are you? I've never used either so I can't help you in that area, but am hoping you get the relief you need SOON!

Have you been able to take any of those amazing pics lately?

Love,
Erin

I know how it feels ,Kate. I was prescribed CPAP but simply could not use it once I got home. I could not breath 'out' against the pressure. The Shop was quite rude and insisted I was not trying hard enough. I ended up returning it as I only had that option for 2 weeks.

Later when I saw my Respiratory Dr he just said that he was not surprised and as my sleep apnoea was only mild anyway ( despite REM being severe ) he did not write another script for bi-pap - saying it costs 2x as much and was not necessary - would not help etc

I must say though - since starting Salbutamol - that my night time sleep seems more refreshing. I wake up next day feeling less sleepy and foggy and giddy. I am not sure if this means my REM sleep is improving ? I only had O2 measured during my test - have no idea what CO2 levels were but now am wondering about a few things.

So I took my cpap machine back today, and my dear technician said although I hadn't used it much I had quite a few aponeas.
I asked about a bipap, and she said she didn't have any here, but rang up their city counterpart. I can go to the city to hire one, as she isn't trained to set one up for me.

Iam wondering if anyone thinks its worthwhile trialing one??? Or am I pulling at straws wanting to jump out of bed like I use to pre mg????
thanks Kate

Hi -- just thought I'd drop in and say that (in the beginning) my CPAP somehow increased pressure on its own.

I was new and thought it must be that I just wasn't learning how to get used to sleeping with it. Turns out, the pressure was way too high. It had to be sent it back to the manufacturer for repair.

Since then it has been okay. I'm waiting for my CPAP guy to get the Dr.'s okay to crank up the pressure once again, as I have been snoring with it and falling asleep during the day. *sigh*

Who knew something as natural as sleep could be so complicated?

Good luck with your machine, RedTail.

Hi Rochelle,

thanks for this, yes my machine increased in pressure everytime I had an aponea, and I had a change of machine from Aflex to Cflex I think. The pressure was set low, but to no avail. At least I was listened to by the tech, as most drs don't listen about the breathing issue.