central sleep apnea

[rose]

Alex,

I know the health care system where you live is different that what I have experience with, but, do whatever it takes to be allowed to use an AVAP style BiPAP machine instead of CPAP. It will make a huge difference. AND you need it. Let whomever set you up with the CPAP know that its not working out for you.

I tried CPAP at the very beginning, just due to how our insurance for healthcare in the US is. I was completely unable to tolerate it. It was worse than using nothing. On the other hand, the bi level (bipap)was so much better than breathing on my own, and then the AVAP bi level is really wonderful. Getting the proper co2 and o2 exchange is really important to how we feel, as well as its affect on how our body organs can function.

And again, considering your age as well as the unusual onset of your weakness, I still hope you're able to look into the mitochondrial disease angle. This type of disease is no walk in the park, but its still better than other options, and is treatable.

Let us know how you get on.

 

[alex scared]

thank you rose for your advice . . When you had the c pap did you find it was difficult to breath out against the resistance ? Cos that is what i find hardest . . I back at my doc tomor and will mention this mitochondial and see what he has to say. i did mention a bi pap at first but they gave me a c pap and asked me to see how i got on with it . . Two weeks now and in truth it not even stopping the apnea. And certainly not doing anything to make my day time breathin am better.. I really dont want to whine on about it . . 99% of users of this excellent forum are in a far worse position than me but its getting very uncomfortable . . And as always i appreciate you taking the time to respond . . . God bless . . Alex . Ps . . This has been bothering me a while . . What the hell is a charlie horse ? !

 

[rose]

Yes, it was the breathing out. It was impossible to fight the inflow of air. Could not do it. When I got my machine, the insurance covering the equipment was using a sleep apnea diagnosed rather than ALS for reasons not important to this discussion. In the US, the insurance companies don't want to pay for a bi level machine unless the patient fails the cpap, as the bi level is much more expensive. So, I had to go through a two week hell period before I could get to try bipap.

If you do a search of threads I started, there is one titled "bipap woes" (or something to that effect). I talk about how wonderful the AVAP bipap is. It is the style bipap I should have had all along, and definitely the type you should ask for.

Again, my advise is to write to Robert (planningguy)about the mito disease. He researched it a lot, and was tested. He should be able to better prepare you for questions concerning this when you go to your doctor appointment (Robert did not have breathing issues, I just remember him looking into this extensively)

good luck, let us know how your appointment goes, and INSIST on a better machine to help with the breathing.

 

[rose]

oh, a charlie horse is a severe muscle cramp. Normally felt at one point in life by almost anyone in the legs, but you can get them anywhere. In and of themselves, they don't mean anything important. But, they are common with people with MND. I got them so bad at first! I was an international flight attendant, would fly all night, get to my hotel room, fall asleep and be up and down for the next few hours, jumping around my room trying to get whatever muscle had seized up to relax! They were much worse after relaxing when first falling asleep, and also worse after I'd worked a trip.