So for background, I’m about 5’5, 130 pounds, and white. Not a smoker. I have Spina Bifida and Arnold Chiari Malformation type 1 and was born with hydrocephalus, now having a VP shunt. I have been on nortriptyline and/or Cymbalta my entire life for chronic migraines, but in the past 2 years or so, they’ve changed into something much worse.

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 my most recent one, two days ago, was infinitely worse. It didn’t go away when I laid down. Nothing eased the pain.

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. As soon as it creeps up my neck and my vision starts to go, I know an attack is happening.

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 in the south central region. I had 4 CT’s and shunt series. Nothing out of the ordinary for my unique circumstance. What most concerns me, however, is the pain feels identical to when I had a shunt repair surgery and my spinal fluid was out of wack.

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, nothing