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9/5/2013 1:15:53 PM
Migraine My Brain
I’d never planned to do health blogs, since medical conditions aren’t funny or romantic or sexy. However, I decided to do this one for two reasons.
First, I’ve had so many questions from wonderful readers who wanted to know when Always Dreaming of You was coming out. And second, now that I’ve finally got a diagnosis and some improvement, I’m learning migraines are very common with people in my situation, so I hope someone is helped by this. In fact, I hope this can help somebody before they get to the point that they are virtually incapacitated like I was.
The progression of this condition was gradual. When I look back, I remember that in my twenties I already had problems being in office buildings. I was glad to take jobs that required me to drive all the time because I felt physically better. I assumed I was feeling ill because I found the office more stressful, not that something specific in the office was making me ill.
My next job had me doing my office work from home, but driving out to cable affiliates to train their customer service reps. I usually left those cable companies with headaches, feeling pretty miserable all over.
After my daughter was born, my teacher-parents and I opened a learning center where kids came for afternoon and evening tutoring. This is when I really started to notice a huge difference between the way I felt in my house or outside and the way I felt inside a commercial building. Once I sat down in my windowless office, I began feeling as if weights were being added to my shoulders and my head. I felt like I was crumpling under pressure or melting like the Wicked Witch of the West. I had headaches all the time.
One day, I was in my office feeling crushed. I walked back to an empty tutoring room with a bank of windows across one wall. The overhead lights were out, the room lit only by natural sunlight. I immediately felt the heaviness lift. A light bulb went on in my head and I began to pay attention to what was around me.
I learned that I felt dramatically worse in florescent lighting, and the longer I was in it, the worse I felt.
Over the next two decades, the condition worsened. I closed the learning center. Eventually I had to quit teaching the English as a Second Language classes I enjoyed at the local college because I couldn’t make it through three hours of florescent lights. Neurologists explained I was having this reaction because florescent light is actually flickering. Most people’s brains can block out this effect, but mine had become hypersensitive for some reason. This made sense. I’d found that I was reacting badly to any lights that flickered or flashed.
But, at some point, I also became sensitive to vibrations and various sounds. The hums of the refrigeration units in the grocery store combined with the florescent lighting were unbearable.
Instead of mere headaches, I began getting debilitating migraines. I was publishing books by this time, but it got harder to work. I couldn’t look into a computer screen because the light flickers, so my husband got me a Neo word processor and ran my computer through a projector.
That worked for a while, but I grew worse until the flipping from one page to another on the Internet and scrolling of any kind was giving me motion sickness symptoms such as nausea and the sensation that my brain was swirling slowly around in my head. It was similar to when you just get off a wild ride at a theme park. If I kept up the activity, I would get a migraine.
Unfortunately, it was often hard to tell just how long I could go before I reached the point of no return. I often managed to work thirty minutes to two hours, then had to spend the rest of the day in a dark room.
Meanwhile, I had several doctors, two of them neurologists. They did an MRI, an EEG, a nerve test. All they could say was that I had “white matter” on my brain, which is common for people who suffer from migraines, but not the cause of the migraines.
I also had a natural doctor who had helped my husband and my daughter with their long-term health issues virtually overnight. He’d helped my fibromyalgia and other problems, but this migraine situation had just gotten worse.
At this point, I couldn’t do much. The motion of walking around the house doing housework was even making me ill and car vibrations instantly threw me into pre-migraine mode. But where would I go anyway? I realized nearly every place has either florescent lights or humming refrigeration units (and sometimes the industrial AC humming got to me).
I couldn’t focus enough to write most days, but I could still think to some extent, and I was thinking I did not want to live this way for another twenty to forty years.
Then, one day, I was with my natural doctor and I mentioned how much my jaw was hurting from TMJ. He looked into my mouth and saw that my bruxing (teeth grinding) problem was so severe, I’d built up excess bone in my gums. He told me the muscles in my cheeks were tight as drums and felt like they’d been working out at the gym every night.
He said, “I don’t think you’re going to feel any better until you get this worked out.”
I called my dentist and she immediately knew a specialist. I’m not sure why she never told me before that my sensitivities could be caused by TMJ or why she didn’t mention how severely the grinding was deforming my mouth. (It turned out there was a lot more screwed up than just excess bone.) For that matter, I’m not sure why the headache specialist I saw didn’t even ask about this on his multi-page new patient questionnaire.
I went to a myofascial pain specialist who made me a very expensive night guard. He told me it’s extremely common for people with my TMJ issues to develop migraines. Apparently, night after night when I was grinding, my jaw was sending pain messages straight up the nerve to my brain, which eventually became oversensitive (or something).
For the first few weeks, I didn’t think wearing the guard would help at all, but over the past several months, I’ve been able to work more and more—usually 5-12 hours per day. I can also ride in the car for a while without feeling bad.
At this point, I’m still hyper-sensitive to a lot of things and sometimes have to stop what I’m doing or get the hell out of a loud humming building. But I’m recuperating from these incidents faster and I’m hopeful that this condition will continue to rollback.While I don’t live a completely normal life, I do feel like I have a life again, and that’s huge for me.
I hope if anyone reading this is headed in the same direction, you don’t put off getting treatment. As women, we tend to worry about others before ourselves and feel guilty about spending money. However, if I had known the cause sooner and treated it, I would have earned much more money by not having to quit all my jobs, and Always Dreaming of You would have been out long ago, along with several other books I’ve had in the works for a while.
Even more importantly, I wouldn’t have missed out on (or been medicated during) so many important and fun things with my daughter the last couple of years she was living in my house.
Since I got this diagnoses, I’ve met several other people who have TMJ/bruxing induced migraines, as well as one who became extremely sensitive to florescent lighting, like I did.
To all of you who sent me emails telling me you loved my books, I want to say that you have my deepest appreciation, whether I was able to answer your message or not. You inspired me, not only to keep writing as best I could, but also to keep searching until I had an answer.