Search This Blog

Friday, February 17, 2012

More Brain Shocks

My brain shocks are back. Last night I had about three small ones, and the night before I had two medium jolts (about a 6 on a scale of 1 to 10, representing the range I know). They are more unsettling than they are painful. It feels like something terrible is about to happen but it stops just short of that. It's like AAARRGH ... don't ... move ... don't ... move ... and then it goes away.

My dizziness is about the same, and it comes and goes. This week my orchestra is playing the live soundtrack to showings of the final "Lord of the Rings" movie, so I continue to sort out my headaches, brain shocks and dizziness to the sound effects of orc slaughter on the enormous screen overhead.

In my craniopharyngioma support group I have now met others who have these symptoms, along with my "tingly" scalp. With much interest, I have met an adult who experiences not only brain shocks but a variation of the "complex auditory auras" that plagued me in the summer of 2010. For those who have not read this before, here it is. I used to "hear" music playing right in the room with me when there was no music playing. This other "cranio" (as we call one another) "hears" her cell phone ring many minutes later, again, after it rings the first time, like a delayed echo.

To be clear, when I write "hear" it is not the same as when you get a song stuck in your head. I mean "hear" in a literal sense. You hear things exactly as you would if it were real. You don't answer the phone the first time, and when it rings again you reach for it only to discover it has not rung the second time at all. You were only "hearing" it the second time. An auditory aura.

I bet in 100 years these symptoms will be explained (or cured) but for now we are an odd bunch, experiencing strange side effects and trying to put them into words.


  1. Ale, I'm so happy that you joined the cranio support group. It IS comforting, in some weird way, to find others who have gone through similar things. I know as a parent of an adult cranio, I really appreciate what they have, and continue to, teach me.

    Did your endo tests show anything to shed light on your recent issues? And not that you don't know this, but sometime you just have to SLOW DOWN. Don't push yourself too much, too often. Easier said than done in your line of work, I know.


  2. I forgot to mention that my blood work didn't have any red flags. At least my kidneys are working correctly, which is a big relief. Thanks for the note!