The Agony of Your Reactions to Anti-Seizure Medications and the Terror of Feeling Like You're Disintegrating

© 2001 Michele Toomey, PhD


March 4, 2002

First a seizure that occurred while driving, which precipitated a car accident. Then the fear of never being able to drive again, the fear of killing someone, the fear of not ever knowing when a seizure will strike...fear is becoming a loud feeling and a constant companion.

Then the anti-seizure meds and your sensitivity to them even to the point of being allergic to them. Every 1 % side effect has a 95% chance with you. Again, trauma. Side effects that could be life threatening, side effects that are frightening, side effects that muddle your mind and drug you into being "out of it", a little "off", a little "weird", again a source of fear. Will you ever be alert again? We are on the third medication of this round. Phenobarbitol. You've had two black outs on it, so the dose is increased. You fly high then the dose is decreased and you crash. Itchy throat, spacey head, fuzzy thinking, all seem threatening and unsettling. Anxiety creeps in and turns to terror You ask me, or rather tell me, "I fear I'll lose my mind." No wonder. That has to be a precursor to sheer terror. I'm so sorry. Very, very sorry. Easy for me to say, "Of course you won't."

But do I really know? Of course I don't. Nothing about this cruel disease has been predictable. I don't expect you will. I will do everything in my power to prevent it as will you.

Perhaps the only certainty we still have is that we will deal with it with integrity, courage, creativity and brains. Disintegration is the logical fear here. Disintegration is anyone's dreaded outcome. Do I think you are disintegrating. No, but your condition on this medication mirrors it. You have every right to go to that dreaded place, but, you have every need "not to stay there."

A month is the trial period of this drug. Let's give it that time, and dare to deal with its side effects, a feeling of disintegration. We hate it but we'll deal with it, all of us, together. You have the lonely spot of being the one experiencing it, but we are with you and won't allow it if we have any say about it. That's all we can know for sure. We're here with you, watching over you, the very best we can. Rest in that place, at least.

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