Epilepsy Awareness
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23 / F
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Posted 11/19/13 , edited 11/19/13
I've been living with epilepsy since I was about 12. I'm almost 21 now so that's almost 10 years. According to the Epilepsy Foundation, more than 2 million people in the US have epilepsy, and 65 million worldwide have it.

My diagnosis come out of nowhere, and we still don't know what the cause is. Our only conclusion is that perhaps it came from when I hit my head two years prior. Sometimes it can take a few years for symptoms to show after traumatic head injury. I have tonic-clonic seizures (or grand-mal). This is the most common and well known type of seizure. http://www.epilepsyfoundation.org/aboutepilepsy/seizures/genconvulsive/tonicseizures.cfm
Despite so many people living with epilepsy, not much is truly known about it. Not as much funding and research is devoted to it the same way it is with cancer or diabetes research. And the rumors and stigma surrounding epilepsy is astounding. Or rather, I should say the ignorance. Epilepsy is a disability and it is different for everybody. For me, I have medications that keep me from having seizures (with exceptions, like getting so sick my body can't handle it). However, some people can't find treatments that work, so they can't get their seizures under control. This could prevent them driving or working. I am lucky enough that I am still allowed to drive and work. However, it is nerve wracking informing employers that I have epilepsy because even if they're not supposed to discriminate because of it, that doesn't mean they won't. They'll just find a different excuse to get rid of you, because your disability or "illness" is inconvenient. Yes, I did have an employer do this to me recently. I can't prove it so I can't do anything, but it's discouraging and frustration. And even if I can work, I am limited in what I can do. As you imagine, operating heavy machinery or anything similar is out of the question. I'm also not allowed to join the military, which wasn't my life goal, but if someone was later diagnosed with epilepsy but they wanted to join the military beforehand, they can't now.

It's difficult for the family and friends of someone with epilepsy as well. My dad has witnessed almost all of my seizures, and even if he knows what to do, he hates when that moment happens. My ten year old sister saw one, which is scary for someone so young. My mom has seen a few of my seizures as well (I always manage to have them before she gets home from work apparently). I'm so grateful that after my boyfriend had to witness one that he didn't get scared and run. But it scares everybody that cares about me every time.

This isn't a "please pity me" post. This is for anyone that has epilepsy, knows someone that has epilepsy, or anyone looking to learn more about epilepsy. Share your experiences and knowledge. Obviously what I know about epilepsy from my experiences is going to be very different from someone else. I'm also not a neurologist or epilepsy specialist so please check out: http://www.epilepsyfoundation.org/
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26 / M / Pandemonium
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Posted 11/19/13
I have epilepsy. Not very strong epilepsy, though. I don't fall down and shake when i have a seizure, I just zone out completely.
Still annoying, though.
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23 / F
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Posted 11/19/13 , edited 11/19/13
Sounds like Absence seizures. http://www.epilepsyfoundation.org/aboutepilepsy/seizures/genconvulsive/absenceseizures/index.cfm
I haven't had any of these, but my aunt babysits a girl a has these all the time. She was diagnosed so young that she's behind developmentally and academically. She's still in kindergarten at 7 years old. She's also on some crazy diet to try to control her seizures, because apparently sugar is one of her triggers. Her food has to be sugar free. I don't know the full details of her epilepsy or treatment, but I know that because it started so young and they can't completely get it under control it's had a such a big effect on her.
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26 / M / Pandemonium
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Posted 11/19/13
That sucks. I did have some learning problems growing up. There's a lot of things from school I don't remember. Particularly from history and biology class, and I did rather poorly in most subjects. Things that's expected of most people to know, and I find it really embarrassing.

I still aced math in high school, though. I'm not stupid, I promise.
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23 / F
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Posted 11/19/13
I guess you could say memory loss is associated with epilepsy. Every time I have a seizure I don't remember what happened, and not just the episode itself. I can't remember a lot of the things that happened before or after the seizure. I have to rely on others to tell me what happened. All I know is I'm sore and tired and confused.

I can remember bits and pieces of before a seizure, but then people tell me that's not how it happened.... I was watching Castle with my boyfriend before a seizure and the last episode I remembered before the seizure was one we watched way before the actual seizure happened. While lapses in memory aren't funny, I still find it amusing that I forgot all those episodes in between.
Posted 11/19/13
What do you do when someone has one?
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23 / F
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Posted 11/20/13
It depends on the type of seizure the person is having. Each type of seizure requires different first aid. I'm assuming you're talking about tonic-clonic (or grand-mal) seizures, which are the ones where the person is on the floor seizing (and the ones I have).

You don't necessarily have to call an ambulance unless the seizure lasts for more than 5 minutes or a second one occurs not too long after the first or the person is seriously injured. During the seizure, place something soft, like a pillow, rolled up jacket or blanket, or whatever else is at hand under their head. DO NOT put anything in the person's mouth! You could end up hurting them more than helping them. Don't restrain them either- you could hurt them or yourself. Turn the person on their side to open the airways. Don't leave the person. It's also useful to time the seizure. You don't need a stopwatch or anything. Just look at the clock as the seizure starts, note the time, and at the end of the seizure make note of the time again. Did it last a minute or less or longer? This is useful for family members or their neurologist (if they have one). Most importantly, stay calm! Panicking will make the situation worse and won't help the person having a seizure. More often than not they last 30 seconds to a minute, though it can seem longer. I would also suggest getting a hold of a family member or spouse if you can.

I hope this helps! If you have any questions, just ask!
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21 / F / United States
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Posted 12/5/13
My cousin has epilepsy and I remember as a child when we would play should would just begin to stare into space without moving at all and it would scare the shit out of me but a couple of minutes later she would go back to normal and say, "What happened?" and act as she was before. She can't drive because she may have a seizure and she also has a baby and she can't be alone on fears that she may drop the baby or something while she blacks out. I bet it's really scary and I feel really sorry for her.
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Posted 12/27/13
My brother has had seizure and hallucination problems his whole life.The biggest challenge he's faced is self medication that has led to addiction.Thankfully he's been a recovering addict for 10 years and finally seems to have a medication regimen that regulates his symptoms.
Posted 12/27/13
I Have epilepsy, when i have mt fits i black out for a couple of minutes then wake up with my mussels aching and being incredibility tired , i always seem to be with my brother or farther they tell me that i start to scream and spasm for varying time but its usually around a minute or 2. some of the time i fall asleep as soon as wake up. Due to my medication though i can not drive and am really tired because of it but i control this by regulating my sleeping. although i have it under control now .
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23 / M / In the clouds
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Posted 12/29/13
I was first diagnosed in 2006 after having my first seizure. My seizures are pretty much under control, even though I twitch or tick sometimes when sitting or laying and then. Mine are of the tonic clonic variety, (I think)
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25 / M / Canada
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Posted 12/29/13 , edited 12/29/13
I don't have seizures anymore but I had two episodes when I was a toddler and then that one last episode was when I was around 9 or 10ish.. it was actually induced by an N64 game called Killer Instinct, the last thing I remember before the blackout was playing Killer Instinct and when I finally came around my first memory after waking up was that there was an Indian man above me and he was placing an oxygen mask on my face (I guess I was in the ambulance at this point), after that I blacked out again and I woke up in a hospital
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27 / M / Oklahoma City, OK
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Posted 1/10/14
I have epilepsy. I haven't had a seizure since I was around 10, though. However I vividly remember several of the seizures I had as a child. Especially because most of them occurred while I was sleeping and the seizure would force me out of bed and onto the floor where it would wake me up. I don't take any medications for it and I don't really remember what was the cause of it. I just fear the hell out of having another seizure again.....
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Posted 1/12/14
As far as I know epilepsy can also be caused by parasites such as tapeworms hidden in the brain. But also cysts of other nature can be the cause for it.
Generally, parasites are being underestimated in the medical world, as they are the cause for many diseases, even Crohn's, allergies and some cancerous illnesses. People should get at least once a year medication against parasites. Because not just your dog can get worms, but you too. Even if it's a specific type that has as main host dogs or cats, it still can infect you and build cysts in your organs.

SCN1A mutations can also cause seizures, just like food allergies can. For some the solution can be a change in diet. For example, with epilepsy where medication does not improve or alleviate the condition a ketogenic diet could make them go away completely or improve the condition to a manageable level.
Technically, I'd always recommend to make a full allergy test on as much food as possible just to make sure. Food is the source of energy for our bodies, and thus it's very important that that what we eat is not distressing our body.
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Posted 12/26/15
Year-end cleaning. Closing threads with no new posts since 2014.
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