March 4, 2025 10:33 AM
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 when the right “cure” comes along.
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Posted by Phylis Feiner Johnson
Categories: Epilepsy
Tags: Epilepsy, science, seizure-free, surgery
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I believe you outgrew it, and your bra
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By Arthur P. Johnson on March 4, 2025 at 10:42 AM
🙂
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By Phylis Feiner Johnson on March 4, 2025 at 11:13 AM
Still hoping..But I just got my DBS – it’s about to get turned on in a couple of weeks!I’ve had a VNS for 5yrs.VNS + DBS is becoming a new trend now apparently
Here’s hoping!
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By Tyler King on March 4, 2025 at 11:52 AM
(DBS) may offer a new treatment option for fighting epileptic seizures in those who don’t respond well to other therapies.
Similar to the VNS, it’s minimally invasive and consists of implanting tiny electrodes in the brain that release electrical pulses, reducing the frequency of partial seizures and secondarily generalized seizures.
It also has the ability to constantly analyze brain activity, then deliver the correct electrical stimulation.
Overall, researchers say more than half of those treated experienced a reduction in seizures of at least 50%.
Clinical studies have found that it is generally safe, with the adverse effects being transient and mild.
One of the advantages of deep brain stimulation is that it can be switched off — if side-effects appear — and the entire procedure is reversible.
Those that have DBS – that I know – were reticent at first – but then pleased that they had taken the step.
Good luck! Let us know how you’re doing.
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By Phylis Feiner Johnson on March 4, 2025 at 12:09 PM
Nothing is promised, but always keep hoping. After 22 years I became mostly seizure-free (thanks to surgery), and after 29 years I became entirely seizure-free. Topping 35 years now with just one med…
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By Deb on March 4, 2025 at 12:14 PM
Bravo to you. For your success and having the courage to undergo brain surgery.
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By Phylis Feiner Johnson on March 4, 2025 at 12:19 PM
The important thing is to never wish for more than what’s possible and to be patient. When I had my near fatal car accident, I got the first push – why I had to be serious about controlling my seizures.
Then I had to consider surgery. I got some help with that. My mother-in-law tells me to watch the Discovery Channel. I see a woman with the same problems I was having and she’s decided to have surgery. I watch her go through tests, find she’s a candidate for surgery then watch the surgery.
Now I had to convince my epileptologist I needed surgery. At first, he didn’t agree. He felt I had good control but I wanted better or total control. That’s when I reported every little feeling I had that could be a seizure. He finally agreed with me and set up a VEEG to check me out. I had only one seizure the first four days but had two of the strongest seizures I ever had on the last day. They all came from the left temporal lobe so I was a candidate for surgery.
From there, I learned some interesting and encouaging facts. The surgeon said I have a better chance of dying from a car accident than the surgery. The epileptologist said I have a 95% chance of better seizure control, 85% chance of total control ON meds and a 70% chance of total control OFF meds. I already had that car accident and I’m still here, and the odds look good that I’ll be in better shape after this.
Well, I had a 3-inch cube of my brain removed and it’s led to being part of the 70%. I’ve been off meds since July 15, 2006. This year on November 5, it will be 25 years since my last seizure and December 11, it’s 25 years since the surgery.
I plan on giving out $25 lottery tickets to each member of the family and telling them, “I hope you hit the jackpot so you’ll know how lucky I feel.”
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By Ed Lugge on March 4, 2025 at 3:15 PM
Oh Ed. That’s wonderful.
Especially since you were so well informed and educated in advocating for yourself.
Few people would have the courage, no less the energy.
Your persistence paid off. And I’d like to be on the $25 lottery line, please! 🙂
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By Phylis Feiner Johnson on March 4, 2025 at 3:27 PM
Thank you for reminding us to never give up
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By Lori on March 4, 2025 at 10:09 PM
So AGAIN,, my comment can not be posted. Why is that again ? Someone is
101% doing their best to keep me away from posting, which I thought this
world especially today INCLUDES EVERYONE ? Not here that’s for sure.
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By mymail9901ac3001 on March 14, 2025 at 9:48 AM
Have you tried logging in again? I usually have to log in each time myself.
Not a great system, I agree.
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By Phylis Feiner Johnson on March 14, 2025 at 10:32 AM