[Info] My Epilepsy Awareness group

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Hey all you Epileptics. I've made an Epilepsy Awareness group on Facebook where people can join to love, share their updates, and to support each other. I'm dedicating it to my dearest friend of mine " Michelle Morris " who's an Epileptic who've had her own Youtube account about epilepsy few years ago, but was later been delayed due to personal reasons, so I'm helping her to fulfill her duties from where she had left off.

To introduce myself, my name is Andrew Tom, 21 years old, born in Canada, and I was diagnosed with Epilepsy, since the age of 16. About 8 years ago, something happened to me where I began to questioned myself about what was going on. Every morning when I wake up from bed my arms would always twitch for no apparent reason, and at given times I would lose consciousness for a few seconds. I didn't know what was happening to me so I didn't tell my parents, as I wanted to keep it a secret, because I didn't thought it would be a big deal, however it did became a huge deal as it has gotten worse until one day I slept over at my friends house, and he began to notice I was losing consciousness dropping things.

His parents contacted my dad about this situation then he brought me to the hospital to check it out. At the time, the doctors never thought it was epilepsy, they thought it has something to do with my arms, and that I have to feed the nerves to remain it healthy, so they gave me some medical liquid prescription for me to drink daily to treat them, but few years until now, that wasn't the case.

2 years later, when I visited Toronto for the summer break, the twitching finally developed where I finally had a seizure for the very first time on the couch, as my grandma stood and witnessed. She was very frighten while she rushed to wake my auntie up who was still asleep to call 911. The next moment, I was on the stretcher with the ambulance people around me, thus, I blanked out.

My parents took me to the hospital to check out my brain, and that's when they finally found out that I have epilepsy. Not a very serious one though, but thankfully it's only minor. I think it's called Myocolonus, but I'm not too sure what's it called. Anyways, Since that time I have to visit my epilepsy doctor every 6 months for a checkup of my blood test sample few week prior to see my updated condition, and an EEG test every once in a while.

Epilepsy took everything from me. It took away all of my entertainment and the fun that I have had from my childhood. Now, my parents confiscated my video games, due to the motions, and I was livid about it, since gaming is what always kept me from boredom. My parents confiscated all my consoles and electronic gadgets except my computer, which is only used for homework purposes :( I'm not even allowed to ride my bicycle, nor allowed to swim, and not allowed to get my driver's license until the doctor confirms that I'm medically cleared.

I'm just really upset about what epilepsy took from me, but it was my fault in the first place for playing video games constantly non stop. Even if I hadn't play video games, I probably still would've gotten a seizure, because my parents informed me that ever since during birth, they told me I was shaking violently which may have give in.

It was not until I met Michelle on Youtube years later, which her is more severe than mine. New's article of her published in 2008, BBC News says that she had 15 blackouts in one day... I love her, and I wanted to share something to all of you, regarding to what " Michelle " has taught me.

" Never let any disability or condition ever take control of your life, but instead allow it to be a part of your life ". It's what defines your inner characteristics. She was an inspirational to me and helped held my head up high, and I wanted to return that favor to her :) So if any of you are interested hit me up :)
 
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... I've made an Epilepsy Awareness group on Facebook where people can join to love, share their updates, and to support each other. ...

Sounds good, but CWE members can already do these things right here in this forum. ;)
 
Mr B is

completely right, forum members can do those things here.

However, I DID want to point one thing out to you.

YOU did not necessarily cause your E by playing video games, and to think so is wrong.

E can be inherited, genetically caused by mutations, caused by accidents, or simply appear out of nowhere because that particular person's brain has decided that that is what's gonna happen.

Whoever told you that you caused your E is chock full o' beans.

BUT. Video games CAN be a trigger for people who are photosensitive, and are triggered by the games. If you ARE one of those people, perhaps that is what they were trying to say....
 
Oh, Haven't notice that, thanks for clearing that up.

What about birth problems? because my father once told me that ever since I was born, he mentioned that my body was moving violently in an abnormal matter, which gave in as I progressed throughout life. Could that likely be the case?
 
Well, babies

are quite interesting when they're born. Some are quite as little mice (NOT mine), others are quite vocal and physical (meet mine). This does NOT necessarily mean that you're immediately seizing or seizure-prone at that time. Only a doctor can really determine that. The fact that your dad noticed it is interesting, but the doctors must not have really been too concerned about it or they would have done something then and there. I would wonder what your dad's definition of an abnormal manner is, in comparison to the doctor's.

Mind you, I am NOT saying that doctors are Gods. I adamantly tell people (did so yesterday in fact) to go doctor-shopping because doctors are NOT perfect.

If those abnormal violent body movements were noticed by your dad then, and he's taken notice over the years of their progression, why didn't he take you into the doctor before?

And yes, birth problems CAN be a cause for seizures--damage done by forceps is one reason. But it is only one of many, many reasons.
 
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Oh, Haven't notice that, thanks for clearing that up.

What about birth problems? because my father once told me that ever since I was born, he mentioned that my body was moving violently in an abnormal matter, which gave in as I progressed throughout life. Could that likely be the case?

Febrile seizures?

Benign Neonatal Sleep Myoclonus (ie. jerking while sleeping or falling asleep)?

or wide awake myoclonic seizures (jerks)?
 
Hi Andrew Tom, welcome!

Good for you for supporting your friend, and advocating for epilepsy awareness. I hope you take advantage of all the great resources here at CWE.

Best,
Nakamova
 
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