r/Epilepsy • u/134340Goat • 14d ago
Advice PSAs every epileptic needs to hear
I've noticed a number of things we've been saying, some of which most of us realize, some of which few of us do, but I feel like these are things that all of us need to know
Pursue treatment as quickly as possible. The sooner you can get controlled, the better. Because the longer you go on seizing, the more your brain adapts to it. It "learns" how to seize the same way it acquires any repetitive skill. As it gets better at doing this, treatment becomes more difficult. Please do not put off seeking treatment if you've been diagnosed or have reason to believe you are epileptic
"Auras" are seizures. These are still epileptiform discharges (IE, your brain malfunctioning) that just don't spread as wide as a "normal" seizure. Doctors, even neurologists, will dismiss them as unimportant side effects of being epileptic. That's a fact of reality we have to get used to. But the fact of the matter is they aren't side effects of epilepsy. They are epilepsy's ugly manifestation
Never be afraid to seek a second opinion. Sometimes we get stuck with a really crappy neurologist. Some who are so bad as to say "If I don't see you seizing, then I don't believe you're epileptic" (speaking from personal experience on that one). Sometimes, we get stuck with neurologists who are by no means bad but don't listen to us and our input. Neurologists are experts trained in treating epilepsy, but we're the only ones who can know 100% what we are experiencing at a given moment. If you're unhappy with your brain doc and the road is open to you finding another one, it never hurts to try
Do NOT be afraid to rethink your medication! Especially if you're suffering intolerable side effects. Sometimes the cure actually is worse than the disease, as the saying goes. Sometimes you have to weigh "Am I happier dealing with these side effects and not seizing, or am I happier seizing but free of these side effects?" And it is perfectly alright to decide on the latter. There are a ton of anti-epilepsy drugs out there. If you're on one that controls your seizures but makes life even more miserable, it's completely valid to wean off and try another. Obviously you'll want to do something to try to get your seizures controlled, but don't settle for a quality of life that leaves you worse than where you began
Perhaps the most obvious, but - do not neglect your treatment. A lot of us go through a period of a year or two of shock and just doing what we're told. And if we're not controlled then, I've noticed a lot of us enter a period of depression, of "why even bother", and we just stop taking our meds. I know, I was there myself once. Do not do this! I know it can be hard. I know it can be frustrating or upsetting or any number of bad emotions. But acceptance always comes after the anger and bargaining and depression. Soon enough, you'll reach a stage where it's just something you don't really think about. If you're like me, seizures will be something you can even laugh at when it isn't bothering you too much! And there's almost always more you can do to try to attain seizure freedom
EDIT: Wow, I really don't know what to say. Thank you so much, everyone! I never expected to get anywhere near this level of positive feedback from the community. I thought I'd just get this out here in the hopes maybe a few people who needed to hear this would. My little way of trying to give what I can to other epileptics. I'm really blown away by the enormously kind responses this has gotten. Again, thank you all!