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An update

Six months ago, things got crazy in my life. They’ve gotten better. Actually, they’ve gotten a lot better.

I got away from the stressful job I was in, which made life a lot easier. I took some time off and remembered what it was like to hang around an empty house. I got a new job. We took some nice family vacations. I am now legally permitted to drive without restrictions.

Looking back at last spring with half a year’s distance, I find myself feeling things a little differently. The strongest emotion I feel now is not anger or depression, but gratitude, with a small side of regret.

I’m incredibly grateful for the help and support we got, both on the night of the seizure and over the next several months. My sister and my friend dropped everything they were doing and came to the hospital to sit with Kiddo. My sister took him home and stayed overnight when it turned out I’d be staying at Harborview overnight. I don’t know whether Kiddo will remember that night, but he’s become very attached to the stuffed dog that he got from the hospital social worker, so one day he might want to know the story of how he got it.

But I do regret the fear and worry that this event introduced (or re-introduced) to my family’s and friends’ lives. I know my husband worries about me now, especially when he thinks I’m being not quite my usual self. A very thoughtful friend texted me just as a recent puzzle event was getting started, concerned that some of the flashing-light effects might be a problem for me. I love my friends and family so much for looking out for me. I’m so sorry that there’s a need for them to do that.

Work-wise, I’m a lot happier now. I like my job; I like the product I’m working on so much that I come home and play with it in my spare time. I’ve been told that it’s a noticeable change, and that’s a good thing. I don’t think this job is going to wear on me the same way the last one did. But at the same time, I find myself holding back a bit from getting as emotionally invested in this one as I did in the last one. I’m not sure whether that’s a good thing or not.

I haven’t made significant changes to my habits. I still stay up too late and forget about taking care of myself as well as I should. I don’t call my family as much as they would like, and I don’t take sick time as often as I should. In other words, now that it’s a couple of months behind us, life has gone back to normal for me. The lurking demon is off my radar again, and that probably isn’t a good thing. The meds I take daily do keep me from forgetting about it entirely, so that’s better than nothing.

However, I did make one change specifically with the seizures in mind. I installed an ICE app on my phone, and one of these days I’ll get around to making an actual paper card as well. (The linked article is several years old; the ICE acronym has become much more widely known since then.) I hope the demon never strikes again, but if it does, I’m a little better prepared for it.



Curveball caught, life goes on

Sometimes life throws you curveballs.  I’ve had a few myself, the most recent being just a couple weeks ago.  I’ve noticed that the key to surviving unexpected situations seems to be how well you can adapt to the new version of “normal.”  Heck, even for surviving expected situations (bringing home a new baby, switching jobs), when it’s a significant change to what you were used to.  It’s been about two and a half weeks now since Return of the Seizures, and we’ve had to make some changes at home in response.  Most of them have been minor ones, but breaking old habits and forming new ones can be a little rough until the changes become routine.

The biggest issue for us is that I’m temporarily restricted from driving.  Even though it does feel like we’ve got the seizures under control for now (they haven’t been back since I left the hospital), we’ve been abiding by the restriction for the time being. My husband and I carpool to work now, and he drops me off and then takes Kiddo to daycare himself, since daycare and my husband’s office are very close to each other.  In the evening they pick me up.  It’s been nice driving in as a family, even though it’s meant having to shift around some work hours and responsibilities.

I’ve also had to get back in the habit of taking medication twice a day.  Thankfully, I’m no longer feeling the dizziness on it that I was experiencing the first couple days.  I have a new neurologist now, and I like him a lot. My old doctor’s office was very far away, and they couldn’t see me until the end of May.  This new one is closer, is associated with some of my other regular doctors, and was able to get me in for a visit much sooner.  Switching doctors often means going through another round of tests, and I’m not thrilled about that, but since medical science continues to advance, perhaps they’ll find something helpful this time.  The good news is that my new doctor was willing to switch me from the Keppra that I’m currently taking back to the Lamictal that I took several years ago with great results.  It’s a multiple-week ramp-up process, so I’m sure there will be some emotional ups and downs over the next month or  so, but I’m willing to suffer through that knowing that it has worked well for me before.

In my limited seizure experience, the only time there was a single contributing factor was when I was drinking heavily.  In all other cases, it’s been an accumulation of multiple factors: insufficient sleep, high stress levels (often work- or school-related), and a slightly weaker physical state due to illness. The last one is difficult to avoid entirely, and the first one can also be a challenge with a young child in the household. But there are things I can do about my stress levels at work, and I’m taking steps in that direction.

Other than that, life at our house hasn’t been too affected by this event.  In many ways that’s great, but it also makes it easy to forget sometimes why we made those changes in the first place.  I get busy enough in the evenings that in between sorting laundry and cleaning up dinner leftovers, sometimes it slips my mind that I was supposed to take a pill until it’s overdue by a couple hours.  If I had a severe enough seizure history that forgetting to take my pill on time almost always led to seizures, I’m sure it would be a top priority every night.  But instead, sometimes the more immediate demands of life distract me from those tasks with less obvious results.

For all that I’m willing to talk about it and write about it, let me be clear about one thing:I hate having this diagnosis. I don’t like the practical and emotional impact it has on our family, and I don’t like the idea that my brain needs help to function properly. I just want to be normal again (or as close to it as I’ve ever managed to get.) But I’ve adapted to it before, and we can deal with this now.


The lurking demon

This past Monday evening I left the house for what was supposed to be a fun social evening, an officewarming for the new Intersect offices.  Instead, I ended up in the hospital.  After almost eight years of dormancy, my epilepsy returned with a vengeance.

I don’t talk about it much.  I don’t consider myself a Person With Epilepsy, but rather someone who occasionally had has epileptic seizures.  I was diagnosed in the summer of 1998, more than a dozen years ago, but I’ve had only a handful of incidents in that entire time.  For the first ten years, I was on medication to keep the seizures at bay (and it worked, for the most part) but when I got pregnant in 2008, it had been five years since any seizure activity and my neurologist OK’d me stopping the meds.  Call me, she said, if you have any more incidents.  We were both cautiously optimistic that we’d seen the last of them.

Everyone has a seizure threshold, the amount of stimuli needed to provoke a seizure.  For certain people, myself included, that seizure threshold is more easily reached.  The stereotypical trigger is flashing colors or lights, but only a small percentage of people who have seizures are actually triggered in that fashion.  More common triggers are sleep deprivation, stress, and heavy alcohol consumption.  For me, it’s generally a combination of factors.  This is why I don’t drink much these days; unfortunately, the others are trickier to control.

Last Monday, I was coming off an extremely rough week at work that involved a lot of late nights. On top of that, a stomach flu bug was making the rounds in my family, and I hadn’t eaten much that day.  I was feeling a little off when I got to the party, but wrote it off as merely an upset stomach even though every single seizure I’ve had has been preceded by dizziness and nausea.  Frankly, it never occurred to me that I might be vulnerable, because I thought that my seizures were a thing of the past.

At the party I got to meet a few people I’d been hoping to talk to, but mid-conversation with one of the Intersect developers, I was hit with a wave of dizziness.  I excused myself and slipped into an empty conference room, intending to sit down and collect myself before making a mad dash for the restroom.  But the next thing I knew, I was on the floor coming out of fuzzy unconsciousness, trying to reply to someone nearby saying my name.  When I finally was able to sit up, covered in blood and worse, I learned that I’d apparently fallen face-first onto the concrete floor.  We thought at the time that I might have fractured my nose, but the consensus in the ER later was that I’d just “thumped” it.  I’ve got some nice bruises to show for it.  While in the Harborview emergency room, I had another seizure.  I don’t have a clear memory of everything else that happened there–I’m told I was given Ativan a couple of times, and I was taken for x-rays (I remember them taking out my earrings) and a CT scan–so I’m very grateful that my husband was there to observe and to advocate for me.  Four days later I’m still piecing things together.

Around 1:30 a.m. I was released, and with the help of a friend, we set out to pick up the car I’d driven to the Intersect offices that evening.  We were almost there when my brain foiled that plan by misfiring again, and it was back to the hospital for us.  This time they admitted me overnight.  And from there on out, I really don’t remember much at all until the following morning.  After a few more tests and some discussion with the on-call neurologists, they decided it was safe to let me go again, and this time we made it home without incident.  Since then, I’ve been taking Keppra and resting, and have had no further seizure activity.  Then again, it’s only been four days.  It could be months before another one happens.  It could be years.  It could be never.

I’m surprised by how much this has thrown me.  After all, thousands of people live happy, fulfilling lives in spite of an epilepsy diagnosis.  Years ago, it was just a thing I dealt with, another pill to pop twice a day and a couple behavioral modifications.  But this time it’s hitting me a little harder.  Maybe it’s because the Keppra has depression listed as a common side effect, or maybe it’s annoyance at how much this disrupts our daily schedule (I’m not supposed to drive for six months) and the plans I’d roughed out for the next few years.  But I think a lot of it is due to the fact that I truly believed that this was a demon that had gone away for good.  I’d been seizure-free and off the meds with no ill effects, even through pregnancy and the sleep deprivation that comes standard with most newborns. I was convinced that whatever had gone awry in my brain at the age of 25 had somehow righted itself.  It’s a bit of a blow to discover that instead, the demon was merely biding its time, waiting for the right (or rather, wrong) combination of factors.