Is long-term seizure freedom possible without lifelong medication?

@yaelr
I wouldn't take the chance of discontinuing medications even if a physician recommended it.
The risks, in my opinion are too great.
Approximately 30% of seizure surgery patients eventually have a reoccurrence of seizures who have previously been seizure free for sometime.
I went a number of years with no seizures after my seizures stopped at age 59. However, one day when I was coming out of my dentist office parking lot, making a left-turn, I nearly hit a car right in front of me. Fortunately, it must have been a focal impaired seizure lasting only a few seconds and I was able to prevent hitting him. I was surprised as was my Neurologist that I had a seizure. My seizures stopped at age 59.
No one ever knows when a seizure is going to happen.
Take care,
Jake

@jakedduck1

I kind of agree with you. Stopping meds without risk of the seizures starting again may be possible if they are reasonably sure they know what causes the seizures and have corrected it. But usually they aren’t sure what is causing the seizures or if they do know, they can’t really correct it. I’ve been seizure free for 8 years with med’s and recently had a similar conversation with my neurologist’s PA. Sure it would be good for my pocketbook not to take the anti seizure meds but… We decided it’s working and why break up a winning combination?

@jakedduck1

Hi Jake,

I guessed many with epilepsy as a medical condition already knew this is going to be a lifelong battle. There is no cure, just like HIV. And it can only be controlled. I can only congratulate many friends here who never experience seizures for a long time.

I’m envious.

I’m glad you didn’t hit the car. Insurance would be messy definitely.

Cheers,
Louis

@methel
Even if the seizure focus had been found and corrected the possibility of a seizure stilll exists from the time just after from damage to the brain healing or swelling etc or long after surgery possibly from scar tissue etc.
Another issue although rare my be that the meds will no longer be effective.
Take care,
Jake

@louissc

For me, yes I accepted that it was a lifelong struggle and focused on what I had to do to get through the day. Also try to appreciate that modern medical treatments have improved so much. I am old and don’t expect much more progress in my lifetime but think that younger people will live to see permanent cures.

@methel

Hi! Thanks for those uplifting words! I must say I’m exploring all options in front of me at the moment. My current neurologist is getting old, and I have to be ready when he decides to call it a day. That’s how I discovered this board. Although I’m thousands of miles away in Singapore, Mayo remains open as an option and Google led me here. Our public healthcare expertise just isn’t good enough dealing with this niche field of epilepsy.

Epilepsy isn’t as uncommon as it seems. There are 150/yr NEWLY diagnosed cases here in Singapore which has a population of ≈6M and half being locals. Thus, after factoring in those undiagnosed cases, that number is actually substantial given our small population. I believe globally the number is also worthy enough to be taken seriously. However, I do understand that with anything concerning neurology things can get risky and tricky thus the lack of research.

I do remain hopeful the level of stigma decreases day by day and one day, some drug firm will come up with a way of dealing with epilepsy with more minimal side effects of current medications.

Who knows? Someone out there may be hard at work right now. And tomorrow, you will hear a miracle.

Cheers,
Louis