November 2011 - January 2012
After the fluke in September, life returned to my new 'normal' standard of general discomfort but not much pain. I'd enjoyed the fall, with trips with Patrick to wineries and the Rennaisance Fair. The ankle I'd accidentally broke without knowing had healed up fine, and I could work out. Our parents met for the first time over Thanksgiving dinner with some of his extended family. Everyone ate too much and drank too much and laughed too much, then trundled home to sleep it off - like you do. Patrick and I went back to his new place, as I'd had too much wine to drive; I figured I'd go home sometime the next day-ish.
I woke up the next morning and went to stand up to go to the bathroom. Crash. Head explode, on the floor, before I knew what was happening. Oh god. Not again. I decided to stay in bed all day and throw up and black out every time I tried to move and cover my entire head in icepacks, and hope that it would pass in the next two days, like it had last time. I was almost getting to be an expert in this. Patrick was understandably freaked out again, so he phoned my parents to let them know it had happened for a second time in two and a half months, but since I wasn't really panicking about it, my parents didn't panic about it, and said we'd take it a day at a time and hope this, too, went over quickly.
But the next day it was worse. And the next day. And the next day. The pain was intensifying and spreading into my neck and shoulders and back again. I couldn't breathe or blink without nearly passing out. I couldn't keep water down, let alone ginger ale or tea or toast. I wasn't sleeping, only dozing, because the pain was so intense. I could feel every single heartbeat at the back of my head where the pain was centered. And the pain there had spread to both sides of my head, instead of being confined to the left. As the pain increased day after day, I sank deeper and deeper into a massive depressive crash. When you're in so much pain that even the slightest movement makes you black out, it becomes increasingly hard to see that there's a way out, that there's a solution, that there's even something that can temporarily mitigate the pain for an hour or two. And the longer it goes on, the further and further down the vicious spiral I went. By the middle of December, I was in serious, serious trouble. The pain kept getting worse, and I simply wanted to kill myself.
We went to work finding a new neurologist who could possibly help. My fantastic GP, Dr. L., recommended his daughter's neurologist in Alexandria, saying that she thought outside the box of 'traditional' illnesses and wanted to find the root cause of symptoms rather than simply treating them. With Dr. L's in with the practice, I got in to see her in a week; usually, a new patient can wait two or three months for an initial visit. Despite being scheduled in for a half-hour into visit, Dr Chehrenama spent an hour and a half with my parents and I, trying to pin down exactly where the pain centered, where it radiated to, how it felt, how it changed, what my other symptoms were. She requested a series of traditional MRIs and a super-special cineMRI to make sure that there was CSF moving normally inside my brain without pooling and creating a little cyst-like pocket. It took a while, but she finally gave me an answer.
Occipital Neuralgia. There really was something wrong "in my head," a very definite something wrong. The occpital nerves that run from the base of the spinal cord and up-and-over the skull to behind the eyes, were essentially going haywire. The nerve highlighted in yellow here is the occpitial nerve; further up, it branches into the greater occpitial nerve, which runs to behind the eye, and the lesser occipital nerve, which runs more around the skull to behind the ear.
Suddenly, it all made sense. The intense, constant pressure of my brain sitting on the base of my skull and the nerves at the top of my spinal cord had damaged the occipital nerve. When a nerve is damaged, it usually becomes inflammed and swollen. This puts pressure on any muscles, tendons, ligaments, and/or blood vessels around it. In short, what was happening in my head was that my occpital nerves had been damaged and were swollen, pushing against everything that was around it. Then the muscles in the area went into what Dr Chehrenama called "protective danger mode," mostly freezing closed around the damaged area. This made the nerve swell and become more inflammed. The pain I was feeling was the nerves misfiring, sending too many electrical impulses all over the place, because it didn't know what else to do.
So the trick was going to be managing and lessening the inflammation to allow the muscles to relax, which would allow the nerve the space to return to its normal size and stop sending the panicked pain messages to my brain. To do so, she prescribed a series of occipital nerve blocks, or ONBs - a series of steroidal injections mixed with lidocaine, injected directly into the nerve. Yes, it feels as uncomfortable as it sounds, having needles placed directly into the nerves at the back of the skull where there isn't much skin and no muscle or fat to protect it. Luckily, the lidocaine kicks in immediately, so I only ever feel the first tiniest pinprick.
I went back to the office a few days later for the first set of injections. Within thirty seconds of the injection, the entire back of my head was completely numb, which is an odd sensation in itself (hey, where are my ears? I thought they were there a minute ago...), but within a minute, there was no pain at all. It was gone. I couldn't feel a thing. I could poke at my head, pull my hair - nothing. It was the first time in about twenty months I wasn't largely uncomfortable.
Now I had an answer. But everything wasn't better yet. What next?
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