Living with Epilepsy - Seizures, Doctors & Anxiety - This is one of the best videos I’ve seen to describe the epileptic experience (it aligns with mine, especially with how psychedelic my seizures feel, the feeling of increasing inescapable “impending doom” & what my triggers are).

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[–][deleted] 4 insightful - 1 fun4 insightful - 0 fun5 insightful - 1 fun -  (4 children)

This video is half the length and is shorter: https://www.youtube.com/watch?v=vaxJzSUn3PM

It too, pretty much accurately describes my experience except it doesn’t sound as scary from his perspective unless he’s holding back. One of the worst parts of having a seizure disorder (really, what epilepsy is - epilepsy is just a blanket term for seizure disorders which vary from individual to individual), is how stigmatized and uneducated people are as to how terrible it actually feels, before and after. I’ve met many ignorant people who thought the fact that I developed epilepsy meant my cognitive or intellectual abilities were impaired (I mean they are, but that’s not from epilepsy, I’m just a natural-born retart).

It feels like the most insidious, evil psychedelic drug, before and after, and waking up from it is horrible - for the first 30-60 min you don’t know where you are, who you are, what reality or earth even is, until you just snap to at a moment in time. Going into it the confusion and deja vu are intense, and it feels like you’re being chased by something more evil than evil. And during the experience, you’re literally in a black void. You have no thoughts. No feelings or emotions. All I know for sure is there’s blackness, but you don’t think. You aren’t fine or not fine with the situation as nothing matters, you can’t think. There is no you. Some part just recognizes there’s a darkness and it can feel like forever, which feels like what leads to part of the confusion when coming to.

Just thought people would find this interesting as it isn’t often talked about and seizures are very stigmatized. They don’t affect you intellectually, and brake dancing isn’t as fun or funny as it looks tbh. I can respect a good seize the day joke tho.

[–]Node 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (1 child)

Sounds like it could be a bad acid trip. When I was a kid, a guy about to walk past me suddenly fell flat on his face. Having a warning that it's about to happen would make a huge difference. That poor guys face had obviously been smashed flat many times before, and having your head repeatedly hit the ground like that has got to be bad for you.

[–][deleted] 1 insightful - 1 fun1 insightful - 0 fun2 insightful - 1 fun -  (0 children)

Yeah, there are people who don’t get auras.. I feel really bad for them.. at least I know it’s coming. And god forbid those people are insistent on getting a drivers license, find a new neuro and lie to him and take benzos or something to make their eeg look semi-normal.. not only will they kill themselves if they go out in the car, they’ll kill a lot of people.. I never, ever drive if I’m not feeling well. I wouldn’t be able to live with the fact that I killed people over traveling for no reason.

The only psychedelic I’ve ever had is ketamine at a doctors office, I fucking hated it. Because of epilepsy, I don’t like the feeling of not being in control of my body - it scares me. This is partially why I don’t drink alcohol period.

[–]thefirststone 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (1 child)

Thank you for posting that video. I had no idea deja vu could be related to epilepsy, too. I get it in some migraine prodomes.

[–][deleted] 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (0 children)

Migraines and epilepsy are kinda similar in some ways! They’re glitches in certain parts of the brain brought on by negative stimuli and usually involve swelling. Meds that work for one or the other, also usually help interchangeably, especially drugs that are anti inflammatory like cannabis or Diclofenac.

This drug is not well known in the US, but it’s the only NSAID that crosses the blood brain barrier, enters the CNS, and reduces brain swelling (which is involved in both seizures and migraines), I love it honestly (the lowest dose, 50 mg, literally gets rid of brainzaps/partial seizures within 15 min, and better than klonopin/benzos for sure). It’s just very strong so the max dose is 150 mg a day, which is fucking high; that’s the equivalent of your daily dose of ibuprofen.

https://en.wikipedia.org/wiki/Diclofenac

If you’ve never heard of this medicine, it could help you!

An additional indication is the treatment of acute migraines.[15] Diclofenac is used commonly to treat mild to moderate postoperative or post-traumatic pain

Studies are also coming out on its anticonvulsant properties:

https://www.researchgate.net/publication/306922538_Effect_of_diclofenac_sodium_on_seizures_and_inflammatory_profile_induced_by_kindling_seizure_model

The treatment with diclofenac sodium, in the PTZ induced kindling model, decreased severity of seizures and interleukin-6 and TNF-α levels in the hippocampus of animals treated with doses of 5 and 10 mg/kg. New studies are needed to investigate a new therapeutic approach in the treatment of epilepsy with this anti-inflammatory non-steroidal drug.