Reply To: Mestinon 60 mg verses Mestinon XR 180 mg

[Community Member]

Hi Amy

I hesitate to comment because your O2 pattern sounds very different than mine,   Brisk walking raises my heart rate and my O2 sat now I am five months out from my crisis and ICU stay.   I often hit 100% sat doing moderate exercise.    I get breathless when my heart rate gets high but my O2 only dips a little.  It was dipping into the 80’s without any exertion shortly before I went into all out myasthenia crisis  (911 call to rescue squad, ambulance to ER followed by intubation and three weeks in ICU, two of those on a ventilator) .

I can only say to take this O2 deficit very seriously until your docs sort out the cause and maybe get your own pulse oximeter so you can be aware of any changes in your O2 pattern while you are doing your normal routine(s).

I also had bad insomnia just before my crisis. I would wake up after just a couple of hours then not get back to sleep.   A sleep study was suggested but I went into myasthenia crisis before it happened.   In the ICU they gave me Trazodone and Seroquil to help me sleep.  I have continued with that, now sleep normally and can get back to sleep if I do wake up or a bathroom break.   I will check my own O2 if that happens.  It’s never below 93% now and  I never feel breathless when I wake up.  This is on 4 x 60 mg regular Mestinon  usually around  8 am, 12 pm, 4 pm and midnight.

I hope you will find something that works for you as getting good sleep again helps enormously.

Good luck and best wishes

Alan