The “Weirdest” Migraine of My Life: Pseudotumor Ceribri

by K. Louise Zollinger

A couple weeks before Christmas of 2012, I felt a “weird migraine” coming on that was weirder than anything I had ever experienced, despite decades of migraines. The pressure in my head was so intense that I felt my skull might be caving in, and I said to my husband “I’m going to lie down, but I think maybe you should come check on me in about fifteen minutes.”

This was very abnormal indeed–as anyone with a chronic severe headaches knows, just being left alone in the dark is ideal….and I can’t say exactly what I thought might be happening….but it felt distinctly dangerous. I have other health problems that involve living with considerable pain daily, but this was the sense that something very, very bad was happening in my brain. I ended up in the emergency room that night, and many nights after. About twice a week the pain became so earth-shattering that we went in, where I was given shocking amounts of pain meds which did very little. I could barely speak. I could not walk unassisted. I saw a neurologist. He thought I was having migraines and since I could not even open my eyes enough to really look at him I was unable to rationally explain the differences between the migraines I’d had for decades and this fresh hell. Ironically, we later realized that I had occasionally displayed symptoms for about 10 years….but I had always previously found a way to write them off.

After about four months of living in pain that was, quite literally, blinding (the fluid shoves the brain up against the optic nerve, warping it and sometimes cutting off blood flow so you lose vision altogether), a doctor at the nearest rural ER (literally, five beds) thought to check the pressure of my spinal fluid when they were, once again, testing it for meningitis. It was high. Very high. And that was how we learned the truth. I had Pseudotumor Ceribri–a condition which presents the symptoms of a brain tumor (thus the name) but which is caused by the body producing too much of the fluid that fills and surrounds the brain and spinal cord. My brain was, literally, being smashed.

He kindly drained off the excess fluid through the spinal tap that day and continued to do so about twice a week, until I could be booked in for surgery at the Barrow Neurological Institute, just a little over an hour away from home. My surgery was to place a shunt, a long tube that stretches from the right front ventricle of my brain down my neck and along my chest wall, to drain into my abdomen. It has a pressure-sensitive switch that causes it to drain whenever there is too much fluid in my brain. These surgeries are notorious for failing–and for failing quickly, and repeatedly–usually in less than six months. I am very fortunate–my surgery was done by the best surgeon at the best neurosurgery clinic in the country, and four years later my shunt is still doing its job.

While I am living with pretty much the best case scenario, I do still have severe headaches every day. The shunt is a blunt instrument–it will keep me from going blind, and reduce my pain, but it will not magically return me to “normal”. When it rains and the barometric pressure drops, the pressure in my head feels incredibly intense–and the shunt tries to drain to match atmospheric conditions. Then it stops raining and the barometric pressure equalizes, and now the pressure in my brain is too LOW, I’m short on fluid–and that is also very painful–and I have to wait for my body to produce enough fluid to build it back up to normal levels. The same problem is more dramatic on airplanes, driving cross-country, etc. The constant change of pressure on my optic nerve means that my vision–and my glasses prescription–is different every day. I see double most of the time, as my eyes are exhausted. For patients who are struggling with mysterious headaches, pressure in the head–I would say that the most telling symptom, for me, was the pain in moving my eyes back and forth. If that hurts, it’s worth having an opthamologist look at your eyes–they can see if the optic nerve is bulging.