Is long-term seizure freedom possible without lifelong medication?

Posted by yaelr @yaelr, Jul 26 8:11am

Hello everyone!

I'm considering applying to be evaluated at Mayo Clinic and wanted to ask if anyone has had a similar experience.

I had my first tonic-clonic seizure on July 1, 2025, at age 19 (I turned 21 today!). Since then, I've had 17 tonic-clonic seizures, and 16 of them occurred during sleep.

Between the tonic-clonic seizures, I have frequent focal seizures, usually more than three per hour, lasting about 30–60 seconds. During these episodes I remain fully aware of my surroundings and can continue walking, but my language is severely affected. I hear people speaking and know they are talking to me, but I can't process the meaning of the words. I also can't speak, read, or write normally until the episode ends. Occasionally I also experience déjà vu, sudden fear, unpleasant smells, or ringing in one ear.

I think my medical process was normal. Started on a low dose of Keppra, and after each breakthrough seizure my dose was increased. I'm now taking the maximum dose, but I'm still having seizures. My neurologist will likely recommend adding another medication.

Before epilepsy I was very active, athletic, and focused on my health. This diagnosis has completely changed my life, and one of my biggest fears is needing more medications without achieving seizure control.

My question is:

Has anyone with drug-resistant focal epilepsy been able to become seizure-free without needing lifelong anti-seizure medication, either through epilepsy surgery, laser ablation, VNS, RNS, DBS, or another treatment? If so, what was your experience and what ultimately led to seizure freedom?

Thank you for taking the time to read my story. Any experience or advice would mean a lot to me.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for csue1 @csue1

@kb2014
Sounds like an unbelievable, amazing recovery that definitely would bring life changing into the situation. I am very happy for you that you have done so well. I also am a retired RN. Would like to talk more to you about this sometime if you are available and find it comfortable to do so. I will keep you in my prayers that your PTSD get better.
Thanks for responding.
Let me know if any further chats are possible.

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@csue1 I would be happy to chat with you.

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Profile picture for csue1 @csue1

@kb2014
I have been told I need a LTL due to sclerosis from bacterial meningitis when I was 10 months old; I’m much older now and have been having seizures for years. Do you mind sharing more with me about your surgery ..ie surgeon, hospital, recovery? I’m so scared. So glad you are doing well.

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@csue1
Hi Cindy,
Good to hear from you again. I remember from our messages that the seizures came back after your LITT surgical procedure, and I know how much that must weigh on you as you're looking at another decision.
A left temporal lobectomy is a big step, and wanting to go in with your eyes open makes complete sense. Did you end up going through with the SEEG your team had recommended?
Wishing you all the best as you work through this 💜.
Chris

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Profile picture for royanthony @royanthony

I appreciate your question. It couldn't have come quick enough. I'm in the process presently writing our District congressman for help on costs of seizure medicatications. I saw the word ASM and thought it was the same thing as Anti-epilepsy Medication (AED). Perhaps I'm wrong on both. Please educate me ! I want it right for my letter. This congressman is an actual physician, as well.

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Hi, @royanthony - ASM is often used to convey anti-seizure medication, but there are a couple of other things it can stand for in medicine, too.

@santosha - what terminology do you suggest @royanthony use in a letter to a U.S. district congressman?

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Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @royanthony - ASM is often used to convey anti-seizure medication, but there are a couple of other things it can stand for in medicine, too.

@santosha - what terminology do you suggest @royanthony use in a letter to a U.S. district congressman?

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@lisalucier
@royanthony
Hi Lisa and Roy,
I've just learned that both terms have been used, but ASMs (anti-seizure medications) are the current, preferred terminology. The older term was AEDs (antiepileptic drugs), which is now considered outdated.
My suggestion would be to spell out "anti-seizure medications" rather than using the abbreviation ASM.
Chris

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