I’ve got a lot going on this week. I’m getting my 3rd benlysta infusion tomorrow. I’m not really looking forward to riding in the car. Or sitting.
I’ve realized now that being upright at all is what triggers most of my headaches. It’s bumming me out, dude.
This scares me because this is a symptom of a Cerebrospinal fluid leak. When I sit up, I get a headache. When I lie down, it goes away. Except for the fact that lying down irritates my trigeminal nerve. Then I get a different kind of headache.
I don’t know why I would have a leak, especially since I haven’t had surgery yet. But at the same time, it makes sense, given my symptoms, and the fact that I had an unpleasant spinal tap 3 1/2 years ago.
Thursday is my appointment with the neurosurgeon. I decided to keep it when I realized the other day how urgent my symptoms really are.
I’ll keep you posted.