NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - bipap c-pap (https://www.neurotalk.org/myasthenia-gravis/113331-bipap-pap.html)

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.

Quote:

Originally Posted by redtail (Post 615614)

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

I was just placed on a bipap machine last week,,,,,,the dr said that my sleep apnea was " severe"...that when I had the sleep study done, I stopped breathing 53 times EACH HOUR !....so, that's how bad you have to be to be put on a bipap machine, also I was registering alow oxygen level during the daytime, so I am also on oxygen 24 X 7.....