In honor of 💜 Purple Day for Epilepsy Awareness 💜 tomorrow, we'd love for you to share what it's like for you to live with a seizure disorder. What do you wish others knew?
Warm Reminder:
Your voice, feelings and experiences matter 💜. You are a valued Mighty warrior.
#Epilepsy #SeizureDisorder #GrandMalSeizures #TonicClonicSeizures
#ChronicIllness #Disability
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Hi everyone.. today I started my new dosage of keppra due to it being incredibly low in my blood levels.. I was wondering if there are any side effects with increasing the dosage? And when should I expect them? #Epilepsy #Medication #SeizureDisorder #GrandMalSeizures #Seizures
Like other invisible conditions, epilepsy has a substantial impact on the people who live with it. That impact is also felt by the people who are parents or caregivers for those who have epilepsy too.
What’s your epilepsy story? When were you or your loved one diagnosed? How does it affect your daily life?
P.S. A warm Mighty welcome to our new group! We’re excited to meet you. 🧠
#Epilepsy #SeizureDisorder #GrandMalSeizures #TonicClonicSeizures #ChronicIllness #RareDisease #Disability #Parenting #Caregiving
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Hi everyone. In June I was hospitalized because of a grand mal seizure. I had never had a seizure before. At the time I was Juuling - so I stopped, thinking that was the cause of the seizure. I’ve since had 3 more. I had a 20-minute EEG done at the hospital and a 3-day EEG done at home. I was put on Keppra 500mg in the morning and 500mg at night. My most recent seizure was November 20th - into November 21st (all of mu seizure happened during the night) Since then I’ve been taking 500mg in the morning and 1000mg at night. My neurologist said it could be stress but my mother hasnt mentioned going back to therapy. I don’t know how to bring it up, and I don’t want to waste her money again - but maybe it’ll help.. #Depression #Stress #Seizures #Seizure #GrandMalSeizures
What an adorable photo. Two exchange students and their little host brother and sister at a Quinceañera. No one knew that the the next day, that little girl in front would spend her day in the emergency room.
I just wanted to play a computer game; apparently that was too much to ask for an 11 year old. Looking back now it was a seizure triggered by the lights and graphics in the game. But October 28, 2007 was an agonizing day for my mother. I imagine nurses have hard days like anyone would. But a nurse watching their child convulse, make choking sounds, and roll their eyes back into their skull. That would frighten anyone to tears. If you've ever seen someone have a convulsive seizure, it can be pretty terrifying; even if you've seen them before. I'm not talking about the ones on TV where they dramatically fall off of something and someone pins them down so they "don't hurt themself". I'm talking about a friend, family member, or peer has collapsed and you are right there with them. My seizures have frightened off potential friends, my dancing partner at senior prom, my dorm mates, and just the thought of them scares people from hanging out with me. But after 12 years, I know those people were never supposed to stay in my life.
I only have a handful of friends. Not friends like we get along and occasionally hang out, friends like we remember each others birthdays and mi casa es su casa. Those friends are the ones I can count on to know what to do. They know their basic seizure first aid and that's all I can ask of them. I work in an environment where my peers are eager to learn. I live with my sister and she drives me to my epileptologist. The key to this stage of my life is being surrounded by a good support network. People who are willing to accept me, not be scared, and people who will let me practically preach epilepsy 101.
I know my triggers, my body, my seizures, and my pills. Epilepsy has been my constant companion for half of my life and we still haven't found just the right concoction of things to stop the seizures for even 20 hours. Now that Jeavon's Syndrome and Depression/Anxiety have officially joined the crew, I'm ready to be the biggest advocate ever and bring people on my journey! #TonicClonicSeizures #GrandMalSeizures #Depression #Anxiety #JeavonsSyndrome
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