By William | Denver, CO
About 10 years ago I started having problems with headaches, nausea, digestive problems, and a lot of back pain but not usually all at once.
It wasn’t until 2015 that I had a major episode of Mollaret’s, and since then I’ve had multiple outbreaks. Each one is so brutally painful that they’re crippling, I can barely move, and they make it to where I can’t think. It also makes it to where I can’t do anything. I can’t open my eyes to look because the light hurts too bad. I can’t move, rollover, sit, stand, anything for an extended period of time. Focusing on anything gets rather difficult, especially during outbreaks.
I was not definitively diagnosed until 2017 by an infectious disease doctor at St Joseph’s Hospital and he had never seen a case of this. Finding out that I have something this rare, brutal, and could be the thing that causes my end, was kind of harsh, and definitely not something anyone would want to hear.
If it does wind up being the thing that ends me, how long do I have and how painful will it be? I know that my episodes are excruciating, so how bad would it be to have an episode that would be the end, an episode that I could not survive.