111 days of headaches

I’ve not been forthcoming lately about my health. It’s been deteriorating rather markedly in the past months.

Today marks 111 days—and counting—of daily headaches, ranging from tension-style pressure and cluster-like ice pick agony to “flaring match” pain and full-on migraines. I’ve been losing my balance. I’ve been forgetting things. I’m experiencing visual disturbances and pronounced brain fog and confusion. This is all in addition to the regular symptoms of dysautonomia, which have only been compounded by the strain of the daily headaches. Fatigue is extreme, and yet insomnia has returned with a vengeance. The tinnitus has become a roar in my ears. This morning I have a knot of pain in my chest that just won’t quit.

There’s more to it—including this morning’s frightening but short-lived incident of slurred speech. I’ve also been having mini-blackouts, just fractions of a second in duration—it’s like a frame or two of a movie going missing; it looks from the outside as though nothing’s happened, but it’s jarring from the inside.

Suffice it to say, things are not good.

My work has come to a virtual standstill. I’m still contributing my regular monthly feature for the newspaper. It has become a challenge, but it continues to be a bright spot in my month and in my life in general. The NIWA anthology is proceeding according to plan, though I’ve had to put on hold pretty much all of my own fiction work—including volumes 4 and 5 of the Valhalla series (and a novella I’d like to slip in there between them). Essay work has also fallen off my plate.

Up to this point, I hadn’t even shared this news with my family. I haven’t wanted to worry anyone. I haven’t wanted the drama or the attention. But after nearly four months of struggling with this ridiculousness it’s probably time to start letting people know what’s going on.

My doctor is pushing for an MRI. The insurance company is pushing back, hard. My doctor is also making referrals to a neurologist and ophthalmologist, but nothing has been scheduled as yet.

In the meantime, I continue to go on my morning hikes. I tend to feel best in the mornings, and this activity helps to safeguard the rest of my health, such as it is. I’ve also started doing Yoga with Adiene‘s 30 Days of Yoga challenge. I’m taking it at my own pace, sometimes taking a day off when I need it and then picking it back up again. Some days even sixteen minutes of yoga is a hellish slog, but it has been helping me with my balance—even though my balance still isn’t what it should be. I’m a freaking dancer, after all, or I was until dysautonomia started flaring up full force.

Diet is another area I’m taking a hard look at. I don’t eat crap, but there’s always room for improvement. Even though dysautonomia isn’t an auto-immune illness, I’m seriously considering a 30-day paleo elimination diet in an attempt to identify any trigger foods I don’t already know about.

The main message: Things are bad, probably the worst they’ve ever been. We don’t know precisely what’s going on. But steps are being taken. Battles are being fought (primarily with the insurance company). I am (usually) confident that there will be some resolution. Any kind of stress makes things significantly worse.

So if you’ve sent me an email and I’ve not responded right away, please don’t take it personally. I’m canceling out of just about every social engagement these days as a matter of course. I simply don’t have the energy or intellectual wherewithal to engage.



Posted in thoughts from the spiral, writing & publishing.


  1. Dang, Jen!

    Praying and crossing fingers/toes that you and Dr. can fight through the insurance BS so the tests can provide answers – and fast!


  2. Yoga can be a lifesaver. 111 days of headaches would defeat most of us. I admire your persistence in finding ways to manage and improve your health.

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