Woke up at 5am this am and didn't feel right. Not sure how to describe it other than not feeling right. I was slightly congested so that made breathing a little harder. But I thought I might be able to get back to sleep. Not to be. I started to have difficulty breathing and started to cough. Not a good sign. So i went downstairs and used the cough device to force air down my breathing system. And that seem to work for awhile. Then I entered a cycle of breathing for a minute and than not being able to breathe. For about 20 minutes. During bouts of breathing i attempted to clean out the suction device. But then got caught by another bout of not breathing. I will be honest, this is getting very tiring indeed. Not sure how long I can put up with this. I do have one clue. The only thing I did different last night was have one stinking glass of wine. I downed a bottle of Pedialyte after the one glass so I thought that would be enough. But that was the only outlier in my behavior last night so now I will cut all alcohol out of my diet. And see if that stops this from happening.
Sigh,
Sometimes it really sucks to have ALS.
Russ
Russ,
Did you look into possibly getting a CPAP machine? As I mentioned before, I've used one for over 20 years. I'm pretty sure it would work better than a fan to keep you breathing while you sleep. Plus, it humidifies the air; so you wouldn't get as dried out.
You normally have to have a sleep study to get a prescription for one; but I would think your doctor could make an exception in your case.
Russ Are you injecting it into your stomach or by mouth?