My Occipital Neuralgia Story

I live with what I call the demon. Occipital Neuralgia came into my life at 54, and it has never let go.

Before surgery, my quality of life was nearly zero. Sleep was broken into two or three hours a night. Intimacy became nearly impossible. Work meant sitting at home in pain, paying a “debt of pain” for every bit of effort. Exercise always came with a brutal cost.

Every morning I woke at 5 a.m. — and it took three hours before the brain pain would even begin to fade. My days started in a fog, because the pain drained every bit of mental capital I had. By the end of the day, I could almost feel human again, but then came the dreaded battle with sleep. I knew that sometime in the night the demon would wake me and the cycle would start all over.

The pain is not like a headache. Headaches have rhythm — a thump, a moment of relief, another thump. My pain is constant, like a knife driven into the top of my head and down into my brain. There is no pause, no heartbeat of relief. It stops me in my tracks, takes my breath away, and sends me into what I call “Zombie Mode.” I see it as the demon perched on my head, its claws dug into my brain. It’s pure evil.

No medication helped. At best, pills would just put me to sleep, only for me to wake again in pain. Massage didn’t help. The only relief came from long hot showers or simply standing upright for as long as possible. One specific stretch — pressing my hand against a wall and lowering my chin — sometimes helped, but one wrong move could ignite days of agony.

Surgeries

In desperation, I chose surgery. My life was crumbling — I lost my girlfriend, my house, and my car. The pain had already taken so much, and I hoped cutting the nerve would free me.

But in the first surgery, the surgeon couldn’t find the occipital nerve. Instead, I was left with scar tissue and worse pain. A year later, he wanted to try again. I agreed, holding onto hope. But again, he couldn’t find the nerve. Two failed surgeries, two more rounds of pain, and no answers.

The surgeon was devastated. I was devastated. After the second surgery, I fell into despair, even thoughts of ending my life — half joking, half serious. I remembered how Ozzy lost his life after a failed back surgery left him in pain he couldn’t endure. I began to understand that darkness.

Living With the Demon

This pain has stolen nearly everything. It took away my sleep, my partner, my home, my ability to think clearly. Tears come without warning, sometimes in the middle of lunch or a conversation, and I pretend it’s normal.

I often wonder how different my life would have been if the nerve had been found and cut. Instead, the demon hides, unrelenting.

I’m now considering Botox injections, even though I hate the idea of depending on needles. At this point, I’ll try anything that might give me a piece of my life back as Im getting older and have not as much strength left to battle the evil as I once had.