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 have used a bi-pap for almost two years. Neber had a Cpap. My pressure is 10/18. The largest problem I have is that it makes my nose run like crazy! I found some interesting research materials that were written by a group of doctors that did a battery of sleep studies on ten myasthenia gravis patients. Six of the ten were diagnosed with central sleep apnea. Central is pretty rare in its own right as it is seen in only one or two percent of all sleep apnea patients. Basically, it is the brain forgetting to tell your body to breathe..

Basically, it is the brain forgetting to tell your body to breathe.

I didn't show any central apnea during my sleep study. However, I know that it's not uncommon for my brain to "forget" to breathe during the day. I'll suddenly notice that I haven't been breathing. I think's it's my brain trying to give my breathing muscles a break.

Kate - I would just about do anything for a bipap. Even if I had to pay the $2500 or whatever it costs out of pocket, I'd find a way to borrow the money. If you can get to the city to get your hands on that machine I'd do it without hesitation!

Ally

Ally,
I am going up to Perth to visit my big brother, so am going to ring him tonight to ask if he can take me to an appointment. I just happen to be going at the exact right time, which Iam thankful for, so I think I will do my best to try out the bipap, as I'm sick of waking up feeling like I've run a marathon in my sleep.

Wow, GI, I didn't even know that there was such a thing as central aponea.

I know during the day, sometimes when I'm very tired, my body finds it easier just not to breath, which sounds weird I know, but breathing is very tiring.

just found this interesting site about sleep apnea
http://emedicine.medscape.com/article/304967-diagnosis
It really is so much more complicated than we are lead to believe.