Epilepsy Talk

Seizure-free…a hope or a promise? | August 13, 2022

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. 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 if the right “cure” comes along.

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12 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — August 13, 2022 @ 12:27 PM

  2. Thank you for sharing your story. Based on my experience with seizures yours feel genuine. That is most important to me. Thanks again.

    Liked by 1 person

    Comment by William Lipkin — August 13, 2022 @ 1:09 PM

  3. I am on this research project at Stanford. There is this device I put on my head for about half hour everyday. I have been doing this for the past couple of months and it’s really helping. I used to have a Seizure almost every day and Grand mals often. Now I don’t have Seizures every day. Just a one or 2 every week and milder ones. Apparently it’s working for some others in this research project as well – not all. So there is some hope that this really works.

    Liked by 1 person

    Comment by prasadmok — August 13, 2022 @ 1:12 PM

    • Prasadmok,

      Could you please tell us what the device is, so I can research it for the group?

      It sounds amazing!

      GOOD LUCK. I hope you continue to get good results!

      Like

      Comment by Phylis Feiner Johnson — August 13, 2022 @ 1:50 PM

      • I don’t want to give false hopes. The pads you put on your head with this device have to be placed in the appropriate area where the seizures are originating from, otherwise may have adverse effects. Folks may end up trying it by themselves and have adverse reactions.

        Liked by 1 person

        Comment by prasadmok — August 13, 2022 @ 2:03 PM

  4. Hi Phylis – are there people who ever get off of the medication after being seizure free for several years. I’m a senior, and my seizures started this year for no reason (i.e., no brain injury ever or stroke). Cause is unknown. Just wondering what experience others in this circumstance have had.
    Thanks for this newsletter!
    Judi

    Liked by 1 person

    Comment by jbabparzi — August 13, 2022 @ 1:41 PM

    • Usually people stay on medication (albeit a reduced dosage) for preventative measures.

      I wish we had some answer for your sudden, mysterious seizures. 😥

      Like

      Comment by Phylis Feiner Johnson — August 13, 2022 @ 1:54 PM

  5. I think I come here primarily for Hope. Perhaps others do too. The Promise (medical?) is helpful but not as much healing. I’ve gone down all of those “rabbit holes” of at least ten drugs cocktails in studies at a teaching University hospital and epilepsy specialists, as well as five – yes, five – surgeries. But still have seizures.
    Today, however, will be 11 days seizure-free and I feel like celebrating with the people who have helped to get me there! Maybe it is the wonderful mixture of both promise and hope in lamotrigine, xcopri, and a VNS, along with your support that have gotten me to this point. I pass this along to all – especially for the hundreds who read these posts yet do not post themselves.
    Who knows where it will lead? Who knows what it will lead to? I do know it has been a heck of a lot more fun and peaceful living seizure-free, even if it is only for 11 days.
    I’ll just keep on choosing to go forward. I know where I can find both Hope and Promise.

    Liked by 1 person

    Comment by George — August 14, 2022 @ 12:03 PM

  6. Bless you George for your perseverance and your optimism.

    I know 11 days is not a lot, but as you know, each day is a triumph, as you see it.

    Thanks for the uplifting post and all the care and concern you share.

    Like

    Comment by Phylis Feiner Johnson — August 14, 2022 @ 12:07 PM

    • Just for sanity’s sake, I will take the seizure-free days as they come. My mouth is having a chance to heal from all of that clenching down on my tongue and cheeks. My legs and arms haven’t been flailing around. I feel more rested now: those nocturnal, tonic-clonic seizures would only happen in my sleep.

      As I write this reply to your post, I’m sitting on the balcony area of my apartment. An alcohol and drug rehab center is to my right. Though the analogy is not exactly one-for-one, the way the residents get clean and sober there is to do so “one day at a time”. Day by day, they do not give up.

      Statistically speaking, there have to be more readers of Epilepsy Talk, who much more frequently deal with seizures than others and I do – Don’t Give Up! Even if this (only) means a few more hours or days of being seizure-free. It’s worth it.

      Liked by 2 people

      Comment by George — August 14, 2022 @ 1:37 PM

  7. There is a study going on at Standford of the Neuropace device, which is designed to detect incipient seizures and stop them before they start. It is showing promise: http://www.neuropace.com

    Liked by 1 person

    Comment by abilene220 — August 15, 2022 @ 1:39 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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