u/Pure-Science-7774

The altered state of consciousness caused by a seizure was viewed as a divine gift of prophecy or second sight. Because the seizure temporarily severed the individual from ordinary reality, ancient folk beliefs in some regions suggested the sufferer's soul was journeying to the spirit realm or communicating directly with gods. Seizures were viewed as as a form of divine dialogue reveals a rich historical tapestry where the altered state was treated as an interface between the mortal and the transcendent.

I normally have focal seizures with near constant small seizures in my left foot and hand.

Recently, my left foot is seizing more and painfully contracts downward and now I have muscle twitching on my right foot and arm. Are these signs of possibly spreading into a tonic clonic seizure?

Does anyone have experience with cognitive rehab or want better cognitive rehab? I have basically designed my own program because I wanted to be able to speak 5 languages fluently again like before. And the doctors where like Well you can remember your name most days so thats good. Any suggestions?

I was on the epilepsy website and one of the tips was “don’t sleep during the day” Is this website written by epileptics? The very first thing I do after a seizure is sleep. I find the information on the website helpful but on a really basic level. And for example, most people with seizures don’t know VNS is an option. Where do you get the best info from?

As an epileptic, do you hear far right/extreme party just got voted in and worry? Like as soon as I hear “the far right is popular” I think, you mean the same far right that treated long standing epilepsy with euthanasia?

I normally have a fairly optimistic outlook but today I’m so tired of these seizures. I have partial seizures but it’s like all day. And when they cluster I just feel so tired. I’m running out of medication and I just feel like there is this constant mild anxiety about getting into appointments, getting medications on time or the seizures eventually spreading. I have a small fear I will run out of meds and then have a tonic clonic seizure (I haven’t had one before). But I’m really grateful there is treatment and a lot of options. And I’m still feeling way better then I was before any treatment - so, yay?

So this morning I woke up and I was thinking this feels like it’s going to be a seizure free day. A partial seizure immediately followed and I had Todd’s paralysis in my left arm. But I was determined to do some piano anyway and i managed to play a complete song with both hands! Anyway, I just wanted to give some encouragement to anyone not having their best day. Today was a win!!!

I went to the epilepsy website and got a lot of information but for example I created my own calendar because, let’s just say it has room for a more unpredictable day. And then I found some naturalpathetic things to help with absent seizures. Anyone have any other book recommendations or other websites?

Does anyone have experience with the tele provider neurahealth? They say they treat epilepsy but I’m like can they give me all the meds? I can’t find any reviews anywhere about seizure patients.

Does anyone have experience with the tele provider neurahealth? They say they treat epilepsy but I’m like can they give me all the meds? I can’t find any reviews anywhere about seizure patients.

Does anyone have experience with getting seizure medication refills through Neurahealth tele services or other telehealth services for seizures? Any suggestions for the best course of action?

I saw a news report that said that a lot of seizure patients spend up to 3 hours a day watching tv (and thus we should be working instead). ? I think I missed something. What are we supposed to be doing as we slowly regain consciousness?

So I have so many funny epilepsy stories. But once, I called on the phone because I was convinced the customer service person messed up my paperwork but I was keppra ENRAGED (and I’m normally really calm and the opposite of angry). But I wanted to set an example for my kids and I said, some people have cognitive problems and we just have to be patient and empathic. Most people are just trying their best. Well, turns out, I was the one who was confused. Lol.

I know most epilepsy stories aren't funny and are just traumatizing. However, leading up to my diagnosis, looking back I think it's genuinely hilarious how many times I had a seizure (a partial seizure) and the doctor didn't notice. I went to one evaluation with a neurologist and he was testing my eyes and my eyes seized and rolled up twice (like forced upward gaze) with my left arm jerking and he put in the chart "something's wrong with her eyes" and then he wrote "Stares off blanky and doesn't always respond to questions" and his conclusion was I was just enamored by him. He says, "She's just here because she wants to see me, I recommend therapy sessions with me, there is no neurological condition that can cause this."

Another time I asked the neurologist (a different one) about my driving. I said, “I’m getting pulled over by the police and one Officier asked me, ‘Did your doctor said you CAN DRIVE?’” And my neurologist said, “Naw, you are fine, keep on driving girl!” 

I just find this so far outside of what I was expecting.

Okay, so there are so many things that suck about seizures and everyone’s experience is different. However, I’m noticing a some positives. Like for one, seizure treatment has gotten so much better over the years - epilepsy is no longer considered proof of a pact with the devil (that used to be a real thing). Anyone else have some positive perspectives? Thoughts?

Today is the first day all week I have been able to sit up in a chair. I am so tired after seizures I have to lay completely flat. No pillow, just completely flat. But right now I’m sitting desk - major win! Does anyone else have fatigue this bad?