So for background, I have Spina Bifida and Arnold Chiari Malformation type 1 and was born with hydrocephalus, now having a VP shunt.

I get horrific migraines about once a month. Screaming bloody murder, incoherent, vomiting until I’m empty and just dry heaving painfully, eventually passing out from exhaustion. Most of the time they’re positional, pain when I raise my head above a lying position and go away when I lay my head down. But sometimes I don’t get that mercy, and I’m left screaming with my mom taking care of me until I finally tire out. It feels like two long nails are being drilled into the back and side of my head, then pushed in with a tight rubber band.

I have an extremely high pain tolerance. I’ve had 12 major surgeries since childhood, I’m no wimp when it comes to pain. But these headaches truly make me want to never risk doing anything ever again lest I somehow trigger them. All I want when they happen is to lie down and die. I would consider the pain the worst I’ve ever felt, at LEAST an 8 on a good day.

I’ve seen 3 specialists on my condition, had almost 4 CT’s and shunt series. Nothing out of the ordinary for my unique circumstance.

I see another neurologist in about a week, but I want to see if anyone has any personal experience or insight. Thanks so much in advance for any help.

TL;DR: Excruciating orthostatic migraines, very sudden onset. No visible issues with spinal fluid, aneurysm, tumor, etc.