Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
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Gasping For Air

WorkingThingsThrough
WorkingThingsThrough
This weekend I had my first severe breathing episode. About 5 AM I woke up out of a deep sleep unable to breath (besides MG I have sleep apnea but have been off of my CPAP). I bolted out of bed and started walking around gasping for breath. I could only manage long unproductive gasps which were accompanied by very loud deep raspy vocal sounds. It seemed like my throat had closed up and I couldn't get enough air through - either in or out. Just as my wife was about to call 911, I bent over and put my hands on my knees and was able to get a semi-full breath. It took about 15 min for my breathing to return to normal.

I took an extra Mestinon and was able to get back to sleep. I'm going back to using the CPAP every night.

Need to know if those with sleep apnea and MG have had similar experiences and do they know if it is caused by one or both.

Thanks

PS. I know this was minor and others have had much worse breathing experiences and have had to go to the ER. All the same, a scary first experience.
MGOhio
MGOhio
Use your CPAP, every night and for naps during the day. Myasthenia IS the reason why I have a CPAP.
TBreak
TBreak
Same here. Never had a CPAP until MG came along.
annkemp
annkemp
Well ....first of all this isn't minor. I fact the truth is.....it couldn't be much worse.
You need to get in contact with your mg specialist and get this all coordinated and organized.
Please don't underestimate the power of this.
Yea I have been in worse ...I was on respirator for 4 weeks
What I did learn from my neuro.....breathing issues are the worse and need adequate treatment.
mgot
mgot
I started taking time span mestinon at night when I started waking up every night at 2 am with breathing problems. That worked for me. My husband is on an autopap so I'm hoping that we both don't need one. Currently now that I'm on cyclosporine I don't need the timespan.
SeattleWriter
SeattleWriter
this sounds familiar! I had a similar experience when weak while also dealing with a lung infection. A mestinon timespan at night helps me a lot. The key is to make sure you get to the ER if you're this bad--don't hesitate, because this serious business. Be well!
xmas25
xmas25
just be careful! i had increasing sob over 2 week period-mg i thought -pherisis and more pred didn't hlep,wokeon a sat couldn't walk 3 steps without gasping. to er they didn't think it was mg but were puzzled,some dr ordered ct of chest-multple blood clots in right lung and 1 medium sized in left! no reason for them was ever found even with 20 vials of blood of testing. i now thanks to my hubby being very very upset since i could have dropped dead at any moment have decided not to blame everything on mg! now i have to inject bloodthinner daily for rest of my life. we tend to blame everything it seems on mg when our bodies could hiding any kind of new adventure!
WorkingThingsThrough
WorkingThingsThrough
Thanks for the advice and comments. My neurologist is taking me off of the prednisone as it seems to be swelling not only my face, but my throat and obstructing my airway at night. I'm also going to my sleep doc to get my CPAP machine re-calibrated to increase the pressure.

The prednisone swelling has also had a negative effect on my main symptom; slurred speech. When I've been off of the prednisone for about 3 weeks my neurologist is going to try something else. Yes, I'm still Working Things Through

Good luck and good health