Epilepsy Talk

Seizure Free – A Hope or a Promise? | October 23, 2012

Is it a reality…a hope…or a promise?

Have you been there once for a visit? And then come back, to the land of falling down, shaking, quaking and blackouts.

We all know, the only thing that remains the same is change. Everything is in a state of flux. Drugs, science, our bodies, our brains. From that you can choose hopelessness. Or hope.

Maybe you’ve found the right drug cocktail, diet, VNS, and/or surgery.

Or are you still looking? Do you see “possibility” turning into “probability?”

Wherever you are, it takes a load of courage. And perseverance. And optimism.

Waking every morning to the big “S” question. And then taking charge of your day. Or not.

I know someone who went through hell and back. Fifty-three years of seizures. Every drug that came down the way. Combos changed, doses played with.

He refused a VNS because the company was harassing and pressuring him. (Scary.) And then the big break. Brain surgery.

It was botched. He went on, refusing to be a victim.

And then there was another doctor and another surgery. This time it was a 100% success. He was seizure-free at 56 years old.

For me it’s been relatively cut and dry…

With Dilantin, I was a teen age zombie. (See: Dilantin – Hero or Horror?) My long hair fell out. I got galloping gum rot. And then it stopped working.

I don’t know if I had built up a tolerance or it was my changing teenage body.

Whatever, it was back to square one. The waltz of the drug cocktails. Sometimes numb and dumb. (Is this better than epilepsy?)

And sometimes angry at the world. Falling, puking and a coma.

I went on Atkins. That helped. I started deep breathing exercises. I began meditating. Walking three miles a day.

And finally, I found “my magical med mix”. (Lamictal and Klonopin.)

After all those frogs I kissed, everything came together. Like a perfect puzzle. My epilepsy is controlled.

I know I’m lucky. That’s why I write these articles. To share information, support, hopes and terrors.

Because compassion is what gets us through. Even when the right “cure” comes along.


4 Comments »

  1. It seems like Frakinstorm Sandy or some glitch in cyberspace has left us null and void. Thank you for all of your comments none the less. I read them every day.

    Like

    Comment by Phylis Feiner Johnson — November 2, 2012 @ 10:14 AM

  2. It is a promise, Phyllis.

    In Isaiah 33:24 And no resident will say: “I am sick.” That people that are dwelling in the land will be those pardoned for their error.

    This scripture and many others will be fullfilled.

    Do you know now Allentown came out in Hurricane Sandy?

    Like

    Comment by Ruth Brown — November 2, 2012 @ 11:03 AM

  3. Tried medications, 2 surgeries, VNS, abnormalities were noted on EEG’s and 40 years later after seizures started a fancy thin slicing MRI noted my abnormality was a birth defect riding on a ventricle on the brain. Still have seizures but the newer meds. Help and and the VNS shorten the episodes. Life is much better. Take 4 meds. , but feel more energetic w/ the VNS.

    Like

    Comment by red2robi — September 22, 2016 @ 10:18 AM

  4. YAY! Glad to hear you’re doing well “red”.

    Like

    Comment by Phylis Feiner Johnson — September 22, 2016 @ 12:56 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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