That sounds familiar. I had trouble breathing too, and found that I had sleep apnea which was diagnosed about the same time I found I had MG. Not sure if the apnea came from the MG or not, but after getting used to a CPAP (breathing assist machine) I was able to sleep fine.

Many of the folks with MG who have breathing difficulties also use a BPAP, CPAP ( or one of those variations) to help them when they have breathing difficulties -- not just at night but during the day.
I used mine some during the day too if I started getting short of breath -- it took the panic away and made breathing easy.

Usually you have to have a sleep apnea diagnosis for one of these machines to be covered by insurance, however used ones are available at reasonable cost on craigslist. Mine is a respironics remstar one. It pushes in when I breath in to clear the airway, then relaxes to make it easy to breath out. It is a nuisance to get used to, but I found that I fell asleep quickly with it on, so didn't bother me as much as I expected.

You should ask your doctor about a test for sleep apnea, as it appears that many of us with MG do use one of these machines at times. I am in remission right now, but I still have the sleep apnea, so use it at night. Without it I can't sleep.

Want to do your own test for sleep apnea? Ask your spouse if you wake up often during the night with a gasp for breath. Or if no spouse, then tape record an night's sleep to see if you stop breathing and then gasp often. Essentially that is what the test does in the sleep lab only with some gadgets hooked up to you that make it even harder to sleep!

Good Luck
Russ

Thanks Russ. You are my go to guy on this site. You always have the best answers and when I tell my neuro what you posted, he said you are absolutely correct! I told him he was being replaced by a chat room! I took a Mestinon today and it seemed to help somewhat, so I think I will take one before I go to bed tonight and see how it goes. I don't know if my husband would be of much help, as he sleeps like a log, but the tape sounds good. I don't feel SOB though. I play tennis and exercise and don't have any problems, so again, ??????? See what the doc says and again, thanks.

I've had similar problems when lying down at night. I blamed it on my asthma. When I started taking 60mg Mestinon at bedtime I was much better. I had a sleep study, no apnea, just my throat muscles relaxing at night. My oxygen was dropping a little, especially in the early morning. My carbon dioxide in my blood is a little elevated and I'd wake up confused, heart racing, with throat stuck shut. Turns out I am not only celiac but am sensitive to dairy. Cutting out dairy helped with my throat issues. I also do better with a higher pillow. You can test it out by putting a folded towel under your pillow or raising the head of your bed or mattress. When I had a bad cold with cough I had to sleep propped up to help my breathing.
Flutebell

Thanks Flutebell. Once again, this site is so helpful. I took a Mestinon before bed last night and that seemed to help. I feel a bit better today and will take a Mestinon this afternoon before I go to play tennis. I did take my 10 mg of Prednisone this morning. I'll see what the neuro says. I am also going to ask him if he can refer me to a neuro/ophthalmologist. I need to get my eyes checked for glasses and I don't want to go to an optometrist as they know nothing about this condition. When I went last year with an onset of double vision, it cost me $800.00 for basically nothing. So it is onward and take it one day at a time. I guess with this type of thing, it can change on a dime, be okay for a while, flare up in different ways, etc. Very difficult to deal with at times!