Mysathenia Gravis and Bipap Machine

Im hoping that this is just sheer co-incidence, but about the same time I received my air curve 11 machine, I started to a big decrease in vision and felt that air was getting into the eyes, but could have had a faulty nose pillow as air was shooting out and since then changed and tried different masks and cushions etc but still trying to find the right combination. Upshot was that I visited my Retinologist who said that it could be drying my eyes out and that can cause blurriness and put me on drops and gel. One of the side effects of M. Gravis is double vision and extreme tiredness but pleased to say originally had around 364 apneas in a night with Oxygen levels around 61%, now down to under 7 averaging per night, although still feel very tired, but think I'm slowly on the mend and trying to get my weight down but the Preds don't help.

Anyone else here with Mysathenia Gravis with any tips, appreciated?

p.s. hoping to download a few charts in the near future.....

Wearing goggles at night has worked for me.
I may need to try it again.
No MG, but diabetes and age has effed me up big time.

bran wrote: ↑

Thu Apr 25, 2024 4:06 pm

tried different masks and cushions etc but still trying to find the right combination

Whichever mask you are using, find that model on YouTube and watch some videos on fitting and adjusting.

Could also be some degree of nasolacrimal air regurgitation into the eye.

Rubicon wrote: ↑

Fri Apr 26, 2024 9:09 am

Could also be some degree of nasolacrimal air regurgitation into the eye.

So, I have used different masks, and pillows plus cushions and I think you hit the nail on the head. Last week I had my appt for Medicare approval which I received and told my sleep therapist of the issues, and naturally they were not aware of this. Anyway, I stopped using it for just one night and my eye dryness plus vision improved dramatically. 2 nights not using and no dryness, no blurriness, so It's now obvious that It's as you mentioned, this nasolacrimal air regurgitation going directly into eye. The nasal P30i pillow that goes into your nostrils is the one I prefer and works best for me with the pressures set and yet, its probably causing me the most issues and Im now beginning to wonder if any mask will work for me. The one described in the link provided I might give a go but not sure this will work for me as I am a stomach and side sleeper and this would appear to be totally intrusive. On top of this, the medication I'm on for my myasthenia gravis causes me to dribble a lot(as in excess saliva produced) and with wearing a chin strap, I got my apneas down to around 5 as part of my problem was keeping my mouth open so the last few months been training it to be shut and only breathing in and out through the nose, which is great for the sleep issues but not for my eyes.

Pleased to have these apneas greatly reduced but not to be in this situation where it's causing eye issues and goggles will not help me as suggested(as its internal) so just not sure where to go from here and appreciate any suggestions?

https://jcsm.aasm.org/doi/full/10.5664/jcsm.7286

I do not know if they would help or hurt in your situation but you might talk to an ENT doc about your problem and what you think it is and would something like "lacrimal plugs" be indicated as a possible solution for your problem.

Thx Pugsy.....appreciate it.

Pugsy wrote: ↑

Sat May 04, 2024 2:09 pm

I do not know if they would help or hurt in your situation but you might talk to an ENT doc about your problem and what you think it is and would something like "lacrimal plugs" be indicated as a possible solution for your problem.

I think I may have worked this out, thx to this great board and one poster in particular who mentioned "Deviated Septum". 2 years ago, I fell flat on my face whilst playing pickleball..looked like Mike Tyson for a week and broke my nose as I can feel it, but never saw anyone about this, should have gone to emergency and had a stitch but didnt and really never given this much thought, as it's just a slight scar and bump on top of my nose.......until today?

Except for those who take to CPAP like a duck to water, I always recommend a consultation with an ENT ASAP. She will scope your nose on the first visit for a complete look at your upper airway. She will note any trouble spots and make recommendations.

BTW, correction of a deviated septum is usually an easy surgery with a quick recovery.