Chiari Malformation

Back when I was 24, I was diagnosed with a possible cause (or at least contributing factor) for my epilepsy. I had, my neurologist told me, a chiari malformation. Basically this means that the back of my brain is enlarged (there are several different parts involved in this), and it is pressing on my spine.

This leads to a great number of fantastic side effects like neck and back pain, headache, dizziness, tinnitus, seeing floating bits of light, etc. In other words, discounting the seizures, it has a lot of the same side effects that epilepsy has.

Yesterday I was rocked by a pretty severe chiari headache, which (for me) feels like a huge amount of pressure, a vice on the lower back portion of my skull, at the top of my neck. For those of you with epilepsy, you’ll know that headaches are a pretty common thing. It’s the same for those with chiari malformations.

If you don’t have either, it’s hard to understand. The constant headaches. I cannot, and I’m being perfectly honest here, not the least bit hyperbolic, I cannot remember the last time I went a day without a headache. I remember about 3 years ago I had a masseuse massaging my shoulders and neck. She pushed up. For 30 minutes my head was completely cleared. That highlighted exactly how constant my headaches were. Those free moments were … I can’t describe. The joy and the light, the freedom.

The headache has dulled today. And I’m grateful for that. But, when people look at me with disgust or disbelief when I tell them I always have headaches and am chronically fatigued, it makes me feel awful. I don’t want to feel like shit all the time. I want to be healthy. So stop acting like I’m a horrible person, and take a moment to wonder how your life would be if you were faced with chronic headaches and fatigue. High pitched whining in your ears. Bouncing balls of lights in front of your eyes, disorientation, poor balance.

Maybe you WOULD handle it better than me, but you can’t know that. So give me a damn break.


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