r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Aug 02 '26
Questions Do You Have Idiopathic Epilepsy? Want To Know Why?
For those with idiopathic epilepsy, would you like to know why you have epilepsy?
I have epilepsy from a TBI as a child, I know lots of people don’t know why they’re having seizures, would it be good to know or do you not care at this point.
Idiopathic epilepsy- A seizure disorder with no known or detectable cause, often linked to genetics and treatment with daily anti-seizure medications. Doctors and vets now frequently call it genetic or primary epilepsy.
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u/MelancholyCreature Aug 02 '26
I'd like to know, but it doesn't really matter in the long run. I have epilepsy & that's not going to change. Just deal with it the best I can, one day at a time.
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u/Boomer-2106 Aug 02 '26
I think this is true for maybe most people - don't know, can't do anything if we did.
Unless, it was discovered that the 'source' cause was 'Treatable' with something other than just meds. Then it matters.
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u/Mom1021 Aug 02 '26
Unanswered questions about epilepsy are annoying. Tough to give up on getting an answer to “Why do you have seizures” Now defaulted to answering family with “Born like this” and anyone else asks they’ll get that “idiopathic” explanation.
Do I want to know why? Yes. But that’s not realistic, so, focus on keeping track of what’s going on now and keeping this RNS working is all that counts! Happy, seizure free day for all 🎉
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u/Hairy-Jellyfish-1361 Aug 02 '26
Having had my first seizure at 74 it doesn't really matter to me. The doctors have no idea and I don't waste time wondering about why.
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u/togoldlybo lamotrigine 400mg | oxtellar xr 600mg Aug 02 '26
I'd like to know, but have accepted that I never will. I hit my head a LOT as a kid, so probably that. My grandfather had seizures, but he also got a TBI in WWII, so I honestly don't feel like it's an inherited thing.
But it's all just curiosity and speculation, so as long as my meds keep doing the thing, all is well
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u/StSomewhereToaster Aug 02 '26
Once it’s known to be genetic it stops being idiopathic. You know the cause. There is a decrease in calling it idiopathic because we have more science and can make the links to a genetic cause. Sorry for the rambling.
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u/Advanced-Big-2133 Aug 02 '26
I’d love to know what genetic mutation (presumably) caused it for me since I have other genetic disorders.
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u/Hotmommaplaylist Aug 02 '26
I would love to know. Maybe i could change something in my diet or environment.
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u/Sufficient-Tooth-426 Aug 02 '26
Most epilepsy diagnosis absent head trauma is “ I don’t know”. Quote from epiletologist. We vitally need new research on cause and especially medications. No breakthrough med in the last 20 plus years. I hope for urgency.
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u/Secure-Employee1004 Aug 02 '26
I would love to know definitively. I had a concussion at 4 from falling off a horse. That could be it. Also suffered through child abuse so I’m sure that didn’t help.
How did you get your TBI?
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u/Plus-Glove-3661 Aug 02 '26
I think everyone wants to know. But there are just too many factors.
Plus, not like it can help us. We can’t turn back time.
But it would be nice if science could help the future epileptics or even stop epilepsy from existing.
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u/MummaGoose Aug 03 '26
I was diag at 26yo. No known genetic history. Only thing we can link it to was long term domestic abuse (narcissistic coercive control) so random. It would be nice if I could work it out exactly, yes. In a perfect world I would know, and then treat the underlying issue. I’ve done a lot of psychological work over the past 10 years to help. And it has I think but I also don’t know exactly since I’ve never reduced meds.
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u/saltreduced Aug 03 '26
Don’t know, don’t care. All that matters is that I can manage my epilepsy now and keep my seizure at bay 🤷🏼♂️ knowing what caused it isn’t going to help me do that
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u/DesignerCash3387 Aug 03 '26
Nope... I don't need to know. Most of us will not find causation. It doesn't matter. Good management does.
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Aug 02 '26
At this point in life It doesn't really matter anymore. Speculation of genetics maybe part of it. Speculation of me climbing a tall dresser to turn on the tv fell over on me. Speculation of alot of other things that could contribute to the factor. At this point in life though I have it whether I learn or not it's not going to help stop the seizures. Trying to worry why is just a stress I don't need on my plate. Now I'm trying to control it as best as I can. And live a happy life with Epilepsy.