Is long-term seizure freedom possible without lifelong medication?

@csue1 I would be happy to chat with you.

@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

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?

@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 The older term was AEDs (antiepileptic drugs), which is now considered outdated.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

Hello,
I'm from Sweden, so excuse my english. I have had epilepsy for 26 years now. My type of seizures has varied over the years, All seizures are on my left side of my body. Before I come to my question, I neeed to describe my type of seizures: 1: Small ones, could typically be carbon dioxide feelings in my left leg, general discomfort feelings e.tc. 2: Twitching in left arm and/or left leg. 3: Major seizures whith make make fall down and sometimes i injury myself on differenten part of my body, e.g. my head. @louissc

I forgot to ask my question. I'm medical resistance (I have tried like 15 different medicines. now I have 5 medicines morning and bedtime, still I get 2-5 seizures per day,
Question; When I spend time in warm climate (Sweden is genrally a cold country). when I now spend time in a warm country, I haven`t had a seizure in 25 days., anyone experienced the simular, and know why no seizures
@henrik11

@henrik11
I had a friend from northern Sweden. She came to California where I live and I was complaining about being cold and she said. It's not cold until you turn blue.
Do you have as many daily seizures during the winter and summer?
Do you drink a lot of caffeine?
I was curious if Sweden gets about the same amount of daytime and nighttime, I asked this question because if you got less night time, I was wondering if it could be affecting your sleep and sleep deprivation is probably the number one cause of seizures.
Heat and cold can, as you found out can affect seizures and you should really have a heart-to-heart talk with your physicians.
How cold does it get where you live vs how hot? It sounds as though you're having tonic-clonic and possibly focal impaired seizures. Did your doctor ever tell you what part of your brain the seizures are starting in, temporal, frontal, parietal, occipital? Wh is the temperature where you have fewer seizures?
Best of luck,
Jake

@henrik11

I actually spent 6 months in Lund as a student but that’s almost 20 years ago. Then visited Kiruna for honeymoon. I’m sure Lund’s a different place now. Both had their own charm and I do miss Sweden. Don’t worry. Your English is bra.

Most parts of muscle convulsions happen on the left side of my body as well. Triggers can be heat, humidity etc but that can’t be helped staying in this part of the world. I can get almost twice daily convulsions with the occasional daily uncomfortable feeling.

There’s no clear explanation when it comes to epilepsy I’m afraid. If your medication hadn’t changed, it could be weather or even your body simply found its solution.

But one thing though - congratulations.

Cheers,
Louis

@henrik11

Hi,

Do you now cook/eat food which use more natural spices e.g chili and garlic now instead of processed meat? Diet can be a huge trigger. I’m trying to keep eating processed food like sausages to as minimal as I can. But of course, there are times when I can’t resist McDonald’s & KFC.

Cheers,
Louis

@henrik11
Hi Henrik,
It's so nice to have another international member in our group — I'm also outside the US (Brazil). Welcome to Connect!
If you'd like, feel free to share more of your epilepsy journey here:
Living with epilepsy - Introduce yourself & meet others
https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/
Seizures can definitely vary over the years, as I've experienced myself. At the beginning, my seizures were mild (auras, or simple partial seizures), evolving to complex partial seizures with some twitching in my right arm and leg — also called motor seizures — and much later to some tonic-clonic ones.
From what you've described, it sounds like your seizures originate in the right side of your brain, since they affect your left body side — similar to what @louissc mentioned about his own pattern.
I also saw you mentioned being drug-resistant after trying around 15 different medications — that's a lot to go through, and I imagine it's been an exhausting journey. Epidiolex (pure CBD), used alongside another anti-seizure medication, has helped me get better control of my seizures – my epilepsy is also refractory.
As @jakedduck1 mentioned, both warm and cold weather can potentially be seizure triggers for some people with epilepsy.
Have you noticed whether your seizures actually decrease during the summer months in Sweden compared to the winter months? And has your doctor ever discussed or prescribed Epidiolex for you?
Looking forward to hearing more from you!
Chris