A week before Easter in 2010, I came down with a virus. Along with the headache, fever, and other “normal” flu symptoms, I developed a rash resembling chicken pox. Advised by my primary care physician to hydrate and rest, the spots on my skin disappeared. The headache did not.
Now living in constant pain, I continued to work full time, while visiting the doctor frequently in an attempt to diagnose and treat the unremitting headache. I took high doses of steroids. I tried migraine preventatives, blood pressure medications, antidepressants. I had blood tests galore, multiple CT scans, an EEG, an MRI, an MRA, and even a lumbar puncture (more commonly known as a spinal tap). My first neurologist put me on an elimination diet, while suggesting that my headache might be caused by my sighing, of all things. He closed his practice suddenly; his administrative assistant called and informed me he had no further ideas about my case.
Still without a diagnosis, I began again with a new neurologist. He referred me to a renowned headache specialist at UCSF Medical nearby. This specialist, while clearly very experienced, was abrasive and rude. The exam felt like an interrogation; any additional information I offered other than the specific (short) answer to his direct question was interrupted and ignored. He pronounced that I had a rare case where my neurons continued to send the pain signal developed during the virus, despite there no longer being physical cause for pain. He wondered if this had triggered a genetic predisposition to migraines. He had never seen it last more than 5 years, he said, and sent me back to my primary neurologist.
More medication trials. We also tried Botox injections, to no avail. And in the meantime, my pain was only worsening. Exertion, light, smell, sound… almost anything could trigger an excruciating flare, and there seemed to be no rhyme or reason to preventing it. I was forced to leave the job I loved and became essentially housebound. I felt no urgency from my doctor to come to a diagnosis, but was too sick and tired myself to push him. My partner Brendan began coming to all of my appointments, asking relevant questions, taking notes, and remembering details that my brain struggled to retrieve through the fog of pain.
Three years into pain and at the end of my rope, I made an appointment with an old family friend and nurse practitioner. She immediately wrote me a referral to a female neurologist who specializes in pain management. My new neuro was a breath of fresh air. She was the first doctor to differentiate between my constant head pain and my migraines, the first to have me keep pain charts, the first to suggest meditation in conjunction with medication. She was also the very first to look me in the eye and tell me, “This is not okay. You should not have to live like this. We need to get you a better quality of life.”
But it’s been 5 years now and my pain shows no sign of relenting. I continue to try new treatments and to pursue an accurate, complete diagnosis.