What Others Can't See in People with "Controlled" Epilepsy

We’re the lucky ones.  Our epilepsy is controlled with meds and we live full, productive lives, only very occasionally – if ever – interrupted by seizures.  Our epilepsy even may be invisible to you.

We’re blessed.  So please don’t be surprised when I tell you that I schedule my days according to the ebbs and flows of the meds that keep me running on time. 

When I wake up, I’m at my best.  I haven’t taken carbamazepine and lamotrigine for eight hours, but there’s still a therapeutic level in my bloodstream.  I schedule my most important meetings in the morning when I’m clear-headed before taking my first dose.

  • Morning:  Whoosh.  There goes that first mega dose.  It hits, and I have to be seated and try not to put myself in a position in which I have to say anything important.  If I bend my head down, I’ll go toxic and need to lie down for over an hour.  If I take my Vitamin C, my blood will rush a little, and I’ll also go toxic. 
  • Lunchtime:  One tab of lamotrigine?  Not so bad. 
  • Evening:  I take another, larger dose of lamotrigine.  It’s not as bad as the morning, but I have to be prepared to be dizzy just in case it hits.  No hot pans for me.  No walking far.  Pillows always in reach.
  • And bedtime:  I’m happy to have as much carbamazepine as possible.  If I time my brushing teeth, etc. just right, I can get the whoosh that might help me sleep.  If I don’t, then the whoosh will come and go and I may never sleep.

Please don’t judge me on the off-chance that I have to be late because I haven’t calibrated my day’s activities precisely (and please recognize that I always make sure to be late much less frequently than most).  I’ve been lying down, waiting for the room to stop spinning and being unable to get my thoughts out coherently.  Sometimes, if human error creeps in and I forgot my meds the night before, I’m lying there terrified, wondering if I’ll have a seizure.  If I do, will they cluster, and will I go into status epilepticus – a dangerous series of seizures which medical professionals often have difficulty stopping – while I’m all alone?   I probably won’t have one if I take my morning pills, so I don’t want to make a scene.  I won’t call anyone.  I’ll just weather the fear and hope for the best.

You can’t see my epilepsy and are surprised when I tell you I have it.  I’ve lived a productive life.  But I’m wrestling everyday under the shadow of seizures and the toxicity.  And I'm not alone.  Those of us with controlled epilepsy struggle with our demons.

The true heroes, though, are our sisters and brothers with uncontrolled epilepsy.  As for the 70% who are controlled, well, we’re not quite as lucky as we might say.


Matt Gutting said…
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