#epilepsywarrior

[epilepsy-and-me]

[sapphic-squids]

Please please please PLEASE SHUT UP about people not being disabled enough or too disabled to deal with. Stop whining about how our disabilities impact YOU. I really don't care if my panic attacks and meltdowns inconvenience you, because you're not the one having them. For once in you fucking lives consider disabled people and our feelings. Just because you can do xyz today doesn't mean i can. Some days i can work, on those days it's always "see? you're normal" like being disabled is a bad thing. I am beautiful not regardless of my disabilities, but because of them. I am capable.

[grungeandroses]

I cannot process the fact that epilepsy is still not being taken 100% seriously by people. Epilepsy and seizures CAN and DOES kill people. Earlier today I fell down the stairs while having an absence seizure. There are many ways that epilepsy and seizures can kill and people still believe that it is not as serious as cancer and other illnesses. People die in their sleep from seizures. People can suffer brain damage and even death due to status epilepticus. Some people can even die from simply having a seizure at the wrong place/time. This could mean having a seizure while driving or seizing while walking across the street or down a flight of stairs. You could potentially kill an epileptic by using flashing lights. Stop posting flashing videos in the epilepsy tags. Epilepsy is a SERIOUS and DEADLY disorder that needs to stop being taken lightly.

[fuckedupneurodivergent]

I’ve only woke up like 30 minutes ago and I’ve already had 2 or 3 absence seizures, yesterday night I had like 7. This is not good news I’m about to have a tonic-clonic I can feel it🥲

[culper-spymaster]

Happy Epilepsy Awareness Month

So this month, I'm going to be posting some factoids on Epilepsy, which is some that is near and dear to my heart. But right now, I'm just going to start with telling my story:

I was diagnosed with drug resistant Epilepsy at the age of 4 1/2. My one and only tonic clinic or grand mal seizure, I had at age 5. Tonic clonic seizures are what is called generalized seizures, meaning they affect the whole brain. My seizures are partial seizures, so they only affect a small portion of the brain and body.

For many years, I had tentative control of my seizure. I would have maybe one partial seizure a year. Then I hit puberty. During puberty, your brain goes through significant changes which increase seizure activity. I went from one seizure a yr, to once a week. The severity got worse as well. It went from mild sensory seizures, like tingling, to uncontrollable jerking of my head and shoulder for up to 15 sec. We tried 9 different medications, several doctors, and I simply couldn't get control. It got worse when I started college at GV. Seizures went from 4 a month to 12 a month. That's when we decided to get the VNS. The Vagus Nerve Stimulator sends electricity up to your head at specific times to keep the crazy electricity in your head causing the seizures calm. After the surgery, I went from 12 a month to 1 every 4 months. It was a true life saver. Which brings me to today.

Basic overview of my Epilepsy journey, not including the co-morbities, side effects, doctor visits, medical tests, all that jazz.

[snapping-synapses-for-epilepsy]

Birthdays

My birthday is tomorrow(Nov 17) I love celebrating my birthday because it's a slap in the face to the "naysayers" that say you won't make it in the world because of your condition. Yet we're out there fighting tooth and nail to live our best lives despite what they say because we are warriors that have lived to see another year. So I say be proud you've given your all and beat the odds against you. Scream at the top of your lungs your age and YOU DID IT. Comment your age and boast about your STRENGTH in this battle!

[misssarahlouise]

Wowza! #neuropace

July 23, 2020, it's been a year since my neuropace surgery. My seizures have gone down dramatically to say the least. Instead of 20-25+ seizures a month, I’ve only had about 5 this entire year. Can you say wowza? Thank you to the company who makes this amazing device, you changed my life!

[kristinrepstayor]

HOW ARE YOU ALWAYS READING MY MIND, Taylor?