Brain Buddies

A place for people with Epilepsy to get information, share experiences and stories, and make friends. I also have another History/Turn AMC sideblog called @culper-spymaster, and my mainblog is @surviving-the-hiatus

[brain-buddies]

If you guys haven't watched The Pitt, I highly suggest watching it! Season 2 has an amazing epilepsy subplot, which is represented so well.

[brain-buddies]

Kind of a big deal. This never happens. Just hope it keeps up.

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[the-twitchy-life]

not to be a shithead- that's a lot of people! But it probably skews heavily towards the hours between 8am EST and 5pm Pacific.

[brain-buddies]

@the-twitchy-life 2 am actually is a common time to be diagnosed or have a first seizure. A lot of tonic clonics are nocturnal, so when discovered, it's late at night and in their sleep. My tonic clonic occurred at night, and I spent the entire night in the hospital. My best friend had a stroke then a seizure, in the evening and spent the night in the hospital as well. Either way, yes. It's a lot of people. 1 in 26.

[nightmaretour]

I keep seeing people put accommodations for people with epilepsy on the same level as sensory accommodations for autism and like... no??? Obviously both are important but epilepsy can kill people, SUDEP is a thing. If you expose someone with photosensitive epilepsy to strobing lights they could suffer permanent brain damage or die. Epilepsy is a condition with physical, sometimes deadly consequences. I'm not sure how many different ways I need to say this before it sticks, but epileptic seizures are physical neurological phenomena that can cause lasting neurological damage or death. Epilepsy can kill you. You can die from epilepsy.

[brain-buddies]

THIS. EVERYTHING ABOUT THIS.

[surviving-the-hiatus]

Would just like post MASSIVE epilepsy/strobe on Episode 6 of NCIS:Tony and Ziva, around min 30.

While I'm not particularly photosensitive, it was even giving me issues. Very heavy on the strobe lights.

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I just got diagnosed with epilepsy after having seizures for a few months. I have a brain injury (had 14 brain surgeries for a brain tumor, brain infection and swelling) and it feels really nice to not be "just stressed".

Am I the only person who has been diagnosed with pseudo seizures when really they are focal seizures? And are all doctors as big of an ass about it as mine was in the ER? (He also sent me home BEFORE HE got the results of my eeg but I'm just really salty about that still)

How long does it take to get them under control?

Sorry thats alot of questions I'm just scared and don't see my neuro for a few weeks 😅

No, you're not the only one. One thing to remember is that seizures are a symptom. And Epilepsy is a condition in which seizures are the main symptom. But they are a symptom of many things. While I do not approve of the actions of that doctor, in the ER, he probably sees dozens seizures that are completely unrelated to epilepsy.

Also, the study of psychogenic seizures, is relatively recent. We do not know a whole lot about them.

As for gaining control, I have no answer for you. Everyone, and every brain, is unique. I've had epilepsy for 28 years, and still do not have control, despite 3 medications and a VNS. BUT 70% of people diagnosed with Epilepsy, will gain control in the first 3 medications. Just remember to take your medications, on time and as scheduled. I also suggest getting in contact with your local Epilepsy Foundation. They saved me. Now, they're my second family. They'll have tons of information and resources for you. You are also more than welcome to join the Epilepsy Foundation of Michigan's call and connect. It's a conference call or Zoom call we do every month, and you'll be able to talk with others with Epilepsy as well as our knowledgable staff members.

Of course, you are also always more than welcome to message me with any questions you have. :D

[surviving-the-hiatus]

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[surviving-the-hiatus]

Come join us for the Summer Stroll for Epilepsy in Detroit at the Detroit Zoo in June. Be an in person stroller, virtual stroller, or just donate to my team. If you can't do any of that, please share.