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...
I have not felt well this past week. I have been very tired and had a bad case of the "don't cares." That is so not like me. This too will pass.
I use a bipap for sleep apnea and to help with myasthenia gravis. A bipap is an advanced sleep therapy machine that applies one pressure when I breathe in (15 pounds for me at present) and a reduced pressure when I breathe out (10 pounds). This makes breathing easier for me, give my breathing muscles some rest, and the pressure difference of exhaling helps clear my lungs of any CO2 buildup. That is critical for myasthenia gravis patients.
When the crisis hit after I got out of the shower on August 20, I immediately put on my bipap. It helped and I used it until I left for the ER.
A bipap does much more than just change pressure when breathing, it monitors many breathing functions such as: respirations per minute, flow rate, inspiring and expiring times, and AHI.
I have software that reads my bipap data. I thought it would be interesting to see what happened around the time I went into crisis. I decided to focus on my tidal volume. Tidal volume is the amount of air moved in and out of the lungs on one breath.
By looking at the graph of my data, my tidal volume was about half of what it normal runs. That means my breathing muscles were only working enough to move about half the air I needed in and out of my lungs. No wonder I was in crisis.
I have ordered a car adapter for my bipap so it can travel with me to the ER or anywhere else I go. That would be a good idea for anyone else on a bipap too.
--Kerry
I use a bipap for sleep apnea and to help with myasthenia gravis. A bipap is an advanced sleep therapy machine that applies one pressure when I breathe in (15 pounds for me at present) and a reduced pressure when I breathe out (10 pounds). This makes breathing easier for me, give my breathing muscles some rest, and the pressure difference of exhaling helps clear my lungs of any CO2 buildup. That is critical for myasthenia gravis patients.
When the crisis hit after I got out of the shower on August 20, I immediately put on my bipap. It helped and I used it until I left for the ER.
A bipap does much more than just change pressure when breathing, it monitors many breathing functions such as: respirations per minute, flow rate, inspiring and expiring times, and AHI.
I have software that reads my bipap data. I thought it would be interesting to see what happened around the time I went into crisis. I decided to focus on my tidal volume. Tidal volume is the amount of air moved in and out of the lungs on one breath.
By looking at the graph of my data, my tidal volume was about half of what it normal runs. That means my breathing muscles were only working enough to move about half the air I needed in and out of my lungs. No wonder I was in crisis.
I have ordered a car adapter for my bipap so it can travel with me to the ER or anywhere else I go. That would be a good idea for anyone else on a bipap too.
--Kerry
Time for Kerry to get better. May the Lord start to help you feel healthy!
I try to remember that our feelings are pretty much controlled by our brain chemistry, and this fluctuates a lot. Blaming a chemical in-balance that leads to the "don't cares" helps me get past them.
I started using a cpap (Respironics System One REMstar Auto CPAP Machine with Heated Humidifier) a few months before my MG diagnosis. It too drops the pressure to breathe out. It helped me a lot when I had trouble breathing and although the masks are a pain, for me, I put it on and fell asleep almost immediately so not too bad. It was very reassuring to have as I knew when I had breathing problems I could put it on and get relief immediately--saved some panic attacks.
As someone who likes to explore details of the machines I connect to, I downloaded some shareware http://sourceforge.net/projects/sleepyhead/
that lets me look at the REMstar tracking from the SD memory chip in the cpap machine. Lots of wonderful color graphs and details. The software was free to download and use, but I sent the guy $25 to encourage him to continue. I think it works for several different machines.
By the way, these machines are abundant in the used market on craigslist--so if you need one and the insurance company is recalcitrant, you can buy one that way.
Good Luck
I'm sorry to hear you had a rough week, but I'm glad you are feeling a little better now. As always, my thoughts and prayers are with you my friend.
Scott