Why Last Year Almost Ruined Everything
And 4 things I learned from it
At this time last year, I’d just emailed my primary doctor that my life as I’d known it was over.
It started at Suttle Lake, August 2023. My son and I love it there. We camp, we paddle, bike, hike.
At least we used to.
We were there on a perfect Central Oregon weekend – sunny, almost no wind, clear and 80 degrees. I was determined to get my inflatable paddle board on the water. Standing on deep sand and rolling around a bit as I inflated it; then crouching and hopping to a standing position to make my way out into the lake, I was so excited to see the area from the board once again. As I paddled though, I felt oddly dizzy – but not too surprising on a warm day when you’re working to stay balanced. Then I saw a little glimmer in my upper left field of vision that explained the dizziness. Those with a history of migraines know what I mean. The tell-tale sign that a migraine is on its way.
I’ve had migraines since I was 10 years old, and they were most severe at that age. Nowadays I might have one every five years or so, and they’d been much less extreme. No vertigo, manageable pain, usually responded to a quick intake of caffeine. I thought I could manage and didn’t take my grown-up migraines too seriously.
But that day I had a migraine that didn’t respond to anything that had worked before. Later that same week, I had another one. Gradually over the next couple of months, they increased in frequency to where it wasn’t unusual for me to have one after another, just constantly cycling from the auras to the pain, to pain cessation and back to auras.
My doctor was herculean in her efforts to figure out what was going on. Two MRI’s later, it began to look like my cerebrospinal fluid wasn’t draining the way it should. This was triggering an elevated pressure in my brain – and the migraines were a result of that, along with a host of increasingly distressing and, to me, astonishing symptoms.
Early on, by the end of September 2023, I began to feel like it was taking an absurd amount of energy to do the simplest of tasks. By December, as I walked from my car to my classroom (I teach high school full time), it felt as though I was walking through chest-high wet cement. At another point, my peripheral vision just suddenly went dark. I’ll spare you the rest.
It took until the end of the December get in to see a neurologist. And it wasn’t until March that I began to feel like the wet cement was letting up a bit. Then the peripheral vision returned.
And with great relief I began to recover my life as I’d known it. Since April 2024, I’ve only had two migraines. I still occasionally recognize a few symptoms, but I’m able again to love the life I had, and adapt to the one ahead.
Here’s what I learned:
It doesn’t matter how good your doctors are: they still work within a completely broken system.
Despite chronic intractable migraines confirmed by my PCP and a neurologist, my insurance would not approve the only medication that helped. They required three months of treatment with three different failed drugs, meaning that I would’ve had to live with debilitating symptoms for nine months before I’d have any relief. And I have “good” insurance.
My PCP gave me samples of the drug that worked, and kept in touch with the sales rep to get me more when I needed them. In the health care system we have, you’ll need advocates and you’ll need to be one yourself.
Without a well-regulated nervous system, there can be no long-term health.
It all begins there. Our bodies can heroically manage trauma and chronic stress for a long, long time, but at some point, something will go wrong. For me, it happened to go wrong in my brain. For others, it will be something else.
There is nothing more important than taking good care of yourself. Drop any previous programming about this, and know that it’s a life or death issue. I say that as a mother, a teacher, a daughter and a friend. Your well-being must be your highest priority. (How I got from relationship-based trauma to intracranial hypertension is a subject for another blog.)
No matter how alert you are for the Next Awful Thing, it will catch you by surprise. And this is a good thing.
Those of us with anxious brains on hyperalert for the next thing that will go wrong, we often feel that something is circling, something is on its way. The Next Awful Thing. That’s one of the effects of trauma. But no matter how hard we try to anticipate it, what hits will always be something we could never have imagined. And that’s okay. Here’s why: being completely floored, staggered by a shock, is one of the rarest and most remarkable opportunities to be fully and completely vulnerable. And it’s in this vulnerable state that we’re most able to connect – to be fully human in this human experience. And this is always a tremendous gift.