Check In/Check Up

I’ll begin by acknowledging that despite having had the best of intentions to write at least a post a week throughout January, I’ve instead continued to more or less ignore this blog. I’ve had legitimate reasons for falling short on my WordPress duties, but the guilt nonetheless remains, so I’m just, you know, putting it out there with the self-centred assumption that you were dwelling on the lack of DMS updates and thinking that my failure to make them renders me a horrible blogger/person. (It probably is a reflection of my worth as a human being, FYI, and #anxietydisorder, but it’s up to my weirdo brain to decide that. Keep out of it.)

My seizures have been up and down, but mostly down, since I’ve been medically stabilized for my other health condition. My VNS has had time to start working, my cocktail of anticonvulsants is the best it’s probably going to be for now, I’m resting more than I want to, which is good for my overall health, though it leads to increased frustration and generalized angst, and I’m eating. A lot. (Back to that some other time.)

Snack shopping.
Snack shopping.

And yet I had a tonic-clonic seizure last weekend and likely hit my head on the edge of the bed (“likely” because it was unwitnessed, but it’s happened before, and I had a nasty headache, a goose egg, and other concussion symptoms). The next morning, I skipped my day hospital program and went to the medical clinic. #responsiblepatient

Much to my and my husband’s annoyance, the doctor directed us to go to the ER for further tests.

This was one of those situations in which we knew that a CT scan was almost definitely unnecessary, suggested out of an abundance of caution, but couldn’t say no once I’d been told to have it done.

Being a responsible patient isn’t always all it’s cut out to be.

It was, however, an illuminating ER visit. Indeed, after many hours, pokes, radiation waves, bags of IV fluid, and conversations with medical professionals, I had learned the following (about the current state of my health; I also learned things about human nature, such as that people in a waiting room get very angry when someone repeatedly pulls down her medical mask in order to more comfortably cough/more effectively spread her flu germs):

  1. I had/have a mild concussion.
  2. My Dilantin had snuck down to a subtherapeutic level in the few months since it’d last been checked, perhaps accounting for my recent uptick in tonic-clonic seizures, which are usually pretty well controlled with the combination of my VNS and Dilantin (and the other AEDs I take).

The neurologist who saw me in the ER was hesitant to make any adjustments to my Dilantin, and for good reason: mine is a really weird, fine-tuned dose, one this doctor said he’d never seen before, and my blood level of it tends to swing from too low to toxic with the clench of a fist and the smack of a lip. Since I already had an appointment with my epileptologist scheduled for a few days later, he decided to leave it, and we were sent on our way with instructions for concussion management and the reassurance that I didn’t have a brain bleed.

On Thursday, with my husband with me for support, accountability, and to remember everything I inevitably wouldn’t due to my jittery neurons, I headed to my epilepsy specialist.

Before seeing him, I always manage to do this adorable thing where I forget that he’s a super nice, compassionate guy and spend at least forty-eight hours demonizing him.

“What if he accuses me of faking my seizures?” I’ll ask my husband, who’s rightfully annoyed by the question he’s heard hundreds of times.

“Has he accused you of that in the past?”


“Maybe you should do a thought record about this.”*

In my defence, I was particularly nervous about this appointment because at the last one, when I was in an inpatient unit for anorexia nervosa,* I failed to mention that fact to him. I planned on doing so, but my anxiety ultimately got the best of me. This time I really had to do the right thing and bring it up, especially since I’d promised the people at my eating disorder program that I would.

In the end, the subject arose relatively naturally. He was, as I should have predicted, totally understanding and professional about it. His suggestions regarding my epilepsy care can now take into account my needs as someone who’s in recovery from a restrictive eating disorder and in the end stages of gaining a whole bunch of kilograms to get to a healthy body weight. (No ketogenic diet for me, friends!) We’re making a minor adjustment to Dilantin with the hope that it’ll be enough to bring it back to the green zone, as well as a small change to Topamax to see if I can wean off it without a negative impact on my seizures. That’s right—another glimmer of hope that I might eventually be a four-AED person. We all have ambitions in life.

This is where I’m supposed to write that I learned a big lesson about the importance of openness and challenging one’s assumptions, etc., and while I usually resist most traditional forms of positivity, I’m willing to admit that I did take something from this experience. It’s true: though I don’t do it as frequently as I should, (almost) every time I tell my (crippling) anxiety to scram, I become a little more self-assured.

*If you aren’t familiar with thought records, you should check out cognitive behavioural therapy. It offers great ways to challenge unhelpful thinking patterns and to disrupt unhealthy conversations with your significant other.

*Yes, this was my casual way of disclosing the reason for my lengthy hospitalization and current day hospital treatment. Smooth, right?


3 thoughts on “Check In/Check Up

  1. “What if he accuses me of faking my seizures?” I’ll ask my husband, who’s rightfully annoyed by the question he’s heard hundreds of times.

    Oh god replace seizures with migraines and I am doing the same thing, despite my neurologist telling me that I’m the most severe case he’s ever seen and my GP recommending I apply for PWD.

    To be fair, I had bad experiences with doctors when I was younger and in the US, but I’m a grown up now in Canada and things are different!

    But really, part of my panicky fear about people possibly telling me I’m faking my very serious chronic illness is because 1) I kind of want to believe I’m faking them because then maybe I could get better and 2) because it is so hard and so invisible and I really need caretaking and please don’t take it away. Contradictory, I know…

    I’m so glad you’re getting good care and enjoying some tasty treats. Good luck 🙂

    1. I’m a grownup in Canada, too, thank goodness!

      So funny/not funny you mention reason #1 since I’ve flat-out asked my epileptologist if my seizures could be psychogenic (not faked, not also not epileptic) motivated by a similar psychological process. He said that no one ever brings it up because of the stigma, and I explained that it would be a relief to be able to stop taking my medications! Alas.

      Best of luck with your migraines, and I hope you’re in a not-currently-overwhelmed-with-snow part of this country!

      1. I think #1 is also part of some mental illness prejudice for me as well – like why would I believe that a mental illness so seriously affecting my life would be any easier to treat than migraine?

        Good luck with all your health and enjoying nice snacks.

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