Epilepsy Talk
It’s YOUR Turn! | March 29, 2025
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Epilepsy Talk 
Yes, I’ve been taking Tegretol for 34 years. My neurologist wants me off now…. notlooking forward to being weaned off and taking lamictal at same time!!!!! grrrrrrr
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Comment by buffgirl23 — March 29, 2025 @ 11:12 AM
I’m sorry to say that I’ve had no experience with Tegretol. But I’ve had tremendous success with Lamictal.
After I kissed a lot of frogs, my magic medical mix turned out to be Lamictal and Effexor.
And that’s been for the past 20 years!
I wish the same results for you, buffgirl23.
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Comment by Phylis Feiner Johnson — March 29, 2025 @ 12:23 PM
Tegretol was not a fun drug to be on. And, I had no success with it.
I’m glad you’re moving away from it!
I take Lamictal every day. I think you’ll find it a better med.
All the best to you!
-T
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Comment by Tyler King — March 29, 2025 @ 12:33 PM
Hi everyone, I’m 44 and about to take a huge step in my epilepsy journey. I’ve had seizures almost every day for most of my adult life, and now my DBS is about to be turned on—working alongside my VNS. I know there are no guarantees, but I’ve read about patients who became seizure-free with this combination. I’m hopeful, but also nervous. If anyone else has been through this, I’d love to hear your experience. Wishing the best for all of us fighting this battle.
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Comment by Tyler King — March 29, 2025 @ 12:03 PM
Deep brain stimulation (DBS) has been called “a promising therapy for epilepsy,” as reported by the BBC.
And for those suffering from medically refractory epilepsy — who are not candidates for resective brain surgery — that’s great news.
Here’s some more information from my research:
Deep Brain Stimulation (DBS) — Reducing Seizures By As Much As 50%
I hope this helps, Tyler.
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Comment by Phylis Feiner Johnson — March 29, 2025 @ 12:16 PM
Thank you, Phylis!
Let’s keep our fingers crossed 🙂
I just started this other new drug called Xcopri, which seems to be making waves now. It was recently approved in Canada, But it’s been approved in the US for a while now.
Every week, I’ve been bumping up my dosage..
Love your blog, Phylis!
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Comment by Tyler King — March 29, 2025 @ 12:41 PM
Tyler, more good news: Xcopri provides long-term seizure control in patients with focal epilepsy
https://epilepsytalk.com/2022/06/26/xcopri-provides-long-term-seizure-control-in-patients-with-focal-epilepsy/
Long-term use was safe and reduced seizures by more than 90% in adults with uncontrolled focal seizures, according to results of an open-label extension study published in Neurology.
It’s exciting, it’s amazing. A true breakthrough. To find out more, click on: https://epilepsyu.com/xcopri-provides-long-term-seizure-control-in-patients-with-focal-epilepsy/
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Comment by Phylis Feiner Johnson — March 29, 2025 @ 12:52 PM
Over 24 years ago, I had my temporal lobectomy. I don’t want to say I’m cured. I still say I have epilepsy but it’s under control.
Where am I going with this?
In 2022, I had three surgeries. I was schdeuled to have a stint put in to fix an abdominal aortic aneurysm but I had to have my heart checked out first and that showed blockage in five different places so I had to have a quintuple bypass the next morning. Later in the year, my wife wanted me to check out a spot on my arm and that led to the third surgery for skin cancer. Last April I had my left hip replaced. This May my right hip will be replaced.
Now here’s why I brought up the temporal lobectomy. In each of the five surgeries I just mentioned, I had or have no fear. I felt if I can handle brain surgery, I can handle anything.
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Comment by Ed Lugge — March 31, 2025 @ 10:47 AM
Ed, you are my hero. Fo your perseverance, courage and can-do attitude.
I don’t think I’ve ever met someone as positive as you.
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Comment by Phylis Feiner Johnson — March 31, 2025 @ 11:13 AM