To update everyone since then, yesterday was a little better. I had anywhere from one to three small "brain melts" (which I now think is a perfect term for this) but the top of my head remained very sensitive and painful. This morning (after about eleven hours of sleep) I have had none of the brain melts, and the top of my head still has some tingle, but I wouldn't call it painful anymore. It sparkles like a foot waking up after you have slept on it wrong. A big storm has passed through my head and my intuition tells me this is close to the end of it.
I am seeing my primary care doctor this morning, and I may read him key portions of my blog entry because it details everything better than I could say otherwise. Based on how things go, I'm sure my neurologist and everyone else will get letters, and probably it will be time for a new MRI. My last one was six months ago. It was unchanged, and the plan then was to have the next one in a year unless anything strange happened. This passing storm may or may not mean I'm having a new MRI.
Some things to consider: my vision is fine. When my brain melts occur, I do not experience a dimness in my vision, and I don't see flashes of light. Also, I have spoken at length with a doctor friend, casually, and much of what I have gone through—especially the painful scalp—is consistent with the onset of migraines. Any of the signs of stroke or tumor regrowth along my optic nerves are just not there. My tongue moves fine and I can speak with clarity. I can see colors very well in both eyes. The brain melting for ten seconds is exceedingly weird, but besides this there are no red flags.
I have never had migraines before. I know a lot of craniopharyngioma patients develop them (and just about every other condition, har har) so an educated guess is that I will now be going down the path of managing migraines and figuring out what triggers them in my life.
When my more painful "brain shocks" were a problem (they started in 2010) I was put on Trileptal, an Epilepsy medication used to treat seizures. The brain shocks went away (mostly) and I stopped the Trileptal. Maybe now I will be going back on something like that, a medication that will dull the spiky nerve endings misfiring all over my messed-up brain. It makes sense.
I will write a short update after I see my doctor later this morning. Thank you to everyone who is following me down this bumpy road. You mean the world to me, seriously.
Ale, so happy to hear it seems to be passing. I seriously think it is just misfiring/storming neurons as well... healing or re-routing or getting their timing screwed up. The fact that vision is unchanged and pain (other than your scalp) is not there are HUGE in terms of the tumor or other brain events. So far, Lynds has not experienced any significant headaches (as she had regularly pre-diagnosis - for years). She'll, very rarely, get a quick stab of slight pain and then it's gone.ReplyDelete
I hope you've seen the last of these brain melts. Always thinking about you. Great job of documenting these things as they happen!