I Just Want To Sleep: Insomnia and MG
Last updated: October 2023
One of the first symptoms of my myasthenia gravis (MG) was insomnia. The first night it happened, I was not too concerned because anyone can have an occasional night of insomnia - even without MG. But then the insomnia lasted a week ... then 2 weeks ... until it just kept going.
How insomnia impacts me
Other than the obvious impact of feeling extremely tired, insomnia causes my MG to be very symptomatic. I also have the tendency to have depression. While I don't normally deal with depression, it can go hand in hand with both of these conditions. The good thing is, after dealing with this for many years, I'm very well aware that as soon as I get some sleep, my depression immediately disappears. Although, it takes a while for the MG symptoms to calm down.
Things I have tried to improve sleep
I have tried literally everything to improve sleep. I follow what the experts say to a tee. You know ... the dark room, the quiet, making the bedroom a relaxing spa-type setting. Yeah, none of that helps when I'm having a spree of insomnia. Matter of fact, it almost makes it harder even to rest ... almost irritating.
In that quietness, every little sound is accentuated. There are constantly more little sounds that I was never aware of until I lay there in the middle of the night trying to go to sleep. And yes, I have even tried not taking electronics into the room, like phone or tablet, and we don't have a TV in our bedroom.
But you know what? When you have insomnia, especially when you have insomnia and MG, not having something to do that can make for a long, long night. It just gives me time to think, and usually not about good things. It's more like having a pity party and then that causes the MG to be worse due to stress.
What I have found that actually helps me
For me personally, it helps to just kind of roll with the flow when it comes to insomnia. I have read that sleep problems can be common in several health conditions, including myasthenia gravis. I have found the more I fight with insomnia, the more flustering it gets. Again, that leads to stress. With my MG, stress always has a negative result, even if it's a good stress.1
So yes, I do take a tablet with me to bed. I play games, research different topics, watch movies, listen to music (with ear plugs in). Whatever I can do to help get me some rest. I will read a real book if my eyes can take it! Some nights rest is the best I can hope for.
Taking Mestinon during periods of insomnia
I need Mestinon every 3 hours while I'm awake. During times of insomnia, that ends up being a lot of Mestinon in a 24-hour period. I have tried skipping it during normal sleeping hours with insomnia, but it doesn't end well. I'm unable to move, talk, see ... you know, just MG stuff.
Listening to my body
At the end of the insomnia time, I always resort back to needing ear plugs and a sleep mask. But I can't use those too soon, otherwise I'll just lay there at night. It's all about listening to my body and what my body needs and when.
How often do you experience MG exacerbations/flares?