BiPAP and shortness of breath with MG

[MG Community Member]

I use a bipap to sleep at night. I noticed that I was having increased shortness of breath, during the mornings and when waking in the middle of the night. I also was getting almost a hangover feeling in the morning without the alcohol. I also have Rheumatoid Arthritis and I kept seeing my Carbon Dioxide being high on my blood test results. So I asked my Neurologist about it and she sent me for a sleep study. Unfortunately after going through the uncomfortable sleep study, I found out that the testing is not done on CO2 levels at all and they were only looking for sleep apnea and not neuromuscular breathing issues. I then did some research and learned what I needed was Pulmonary Function testing. I was given a bipap after the Pulmonary Function test (it was a slow process with insurance). Now I use it at night and on my more severe days. My CO2 levels are back within normal range.

[MG Community Member]

Hi Jodi and all. First, Happy belated New Year. Have not been on the forum for a while. Just caught up with the posts. Will explain way below. Was diagnosed 2 years ago with very severe sleep apnea and put on a BiPAP machine. I honestly dont know if its made my eyes worse(initially the steroids) as had real difficulty with air escaping from masks/hose into my eyes drying them out, the humidity in Florida, using nasal pillows which I now know caused my phantasmia(burning smells) that irritated my nose, plus the mestinon, as we know, causes excess saliva and I had to train myself to only breath through my nose by using a chin strap to cut down on the leaks which causes more “events”, and cpap/bipap users will know what I’m talking about, not to mention have had teeth implant issues failing due I’m now convinced, the mask/chinstrap and whole palava, changes your jawline.

I have recently been having shortness of breath(breathing issues, see below) and yes the machine helps but only if one can sleep the whole night or at least 7 hours but unfortunately I have mentioned this before, I am hooked on Zolpidem to get me to sleep but on top of how we(MG sufferers) feel, with tiredness and exhaustion due to MG(which few, including the neurologists really understand) just makes me feel terrible the next day and I’m trying hard to somehow taper off slowly. But there are some very good forums for people needing bipap machines, albeit very few posters appear to have auto immune disorders. But on the whole to answer your question, its vital for some people. Plus we are all different and depends on sleep position and I only use at night. Unfortunately, I have at times woken up and hardly been able to open my eyes and having just returned from the UK, I learnt it’s all about the dew point(which can be 50% lower there) rather than the humidity, and you have to get the pressures correct on your machine. Fwiw, I have a resmed aircurve 11 with P30i set up and nasal pillows. Anyway, brief update…

Had real issues as my eyes have got worse with Macular, fluid and a VMT in the right one, all due to the amount of steroids I was on when first diagnosed with MG, plus most possibly as mentioned above. STRESS with me and the twitching previously discussed, at least with me, is my main issue, huge amounts of stress that took me to the hospital 2 weeks ago(BP 185/105/50) with what I thought was a heart attack, but appears to be stress related/panic attack that can mimic a heart attack. All tests proved negative as they initially thought was a blockage plus bradycardia as in the 40’s/low 50 with my heart beat just sounding and feeling to me so fast and couldn’t sleep for three days(had no zolpidem, so withdrawal symptoms) and think this caused it. Anyway, wearing a patch monitor for 30 days and hopefully, they will see nothing. At worse, a pacemaker!!!

Sorry to go off course re the subject, but still on Windows 7(right old school)and tonbight youtube not working as not supported, and it’s so slow to post a new subject plus eyes dont focus….arghhh, time to update methinks.

My best. Onwards.

[MG Community Member]

It’s great to hear from you again! It sounds like BiPAP has been helpful but also really complicated to adjust to, especially with the mask issues, sleep struggles, and everything else you are juggling. A lot of what you described, like leaks and dry eyes, is helpful for others to hear out loud. We really appreciate how open and thoughtful you are with your descriptions of your experiences. Sending good vibes! -Jodi, Patient Advocate

[MG Community Member]

It’s great to see that BiPAP made a significant impact once you received the correct testing. Thank you for sharing the steps you took. That process can be confusing and time-consuming, especially when insurance is involved. Your experience highlights an important gap between sleep apnea testing and neuromuscular breathing problems. Many people with MG are not assessed for CO2 levels, so your story could encourage others to advocate for pulmonary tests. -Jodi, Patient Advocate

[MG Community Member]

I’ve had all those issues and adjustments with just a cpap and a neuro-pulmonologist. My oxygen is 96% consistently and she’s not concerned. I guess you have to be 85. I have such fatigue and have started an MG injection med and she wants to see how I do on that before switching to a bipap. I would just like to get out of the house without spending 2-3 days in bed afterward

[MG Community Member]

I have mg and I have varying degrees of fatigue. I also have COPD for years and for me yes, 96 percent is good, 85 percent and that was the trigger for oxygen- both home and portable. I have since gone to pulmonary rehab multiple times and have a smartwatch where I monitor my blood oxygen levels – when its high don’t need oxygen. This is working for me.