Hi, my name is Laura. That's all I'm going to say because of course I know absolutely none of you. I wanted to write this book because I wanted to share my story with someone. Maybe no one will read it, but at least I'll have gotten my story, my fears, and everything that goes along with it out into the open. A therapy of sorts if you will. Don't pity me, I've been living with this since I've been 4. It sucks absolutely very very much. But your pity will make me feel worse.
Well. First let's share some fun facts with you guys and why you should care about Epilepsy - or aka - seizures. One in six people will at least have one seizure in their lifetime. That means if you know more than 6 people - odds are someone is going to have one, and if you're nearby when that happens you could be a life saver if you know what to do. So, the seizures you are all thinking of are called Grand Mal's, which in French translates to 'big bad'. These are the ones people usually think of, falling to the floor, shaking and jerking, sometimes foaming at the mouth. Should you see one, let me give you some things to know.
1. DO NOT put something in their mouth - they probably will choke on it
2. You cannot stop it - just ride it out with them
3. Turn them on their side to prevent asphyxiation
4. DO NOT hold them down or try to un bend any muscles, it won't work
5. If you can slide something soft under their head
6. Time it - if it's longer than 5 minutes 911 needs to be called. (Ambulances are very expensive and usually we know what to do after. If you know if it's that person's first seizure or they hit their head hard and there's blood, call then too.)
7. It is a myth that we can swallow our tounges
8. We may vomit (why turning on the side is needed)
9. We may wet ourselves (Yeah yeah. It's gross. We're embarrassed too)
10. We may stop breathing - it's usually okay - our bodies will make us pass out
11. When we come to, most don't know what happened, there's this black spot in our memory, everything hurts. Some people will scream or cry or ect.Okay! Now that we have that covered. What really is a seizure? Essentially it's your neurons in your brain aren't working right, and they get overloaded. Sometimes we're fine, but other times our neurons miss fire and it's like a lightning bolt goes through your brain and screws everything up.
Triggers for seizures, are well... They can be anything. They can be caffeine, hormones, nicotine, lack of sleep, fever, flashing lights - even something as simple as the sunlight flashing through trees, it doesn't need to be strobe lights, things where your head gets jerked around such as: water slides and roller coasters, pot, alcohol, dehydration, medication. And here's a really really big kicker - anti-convulsant medication can also cause seizures. So basically everything. There are ones that I left out, but seizures and their triggers are very broad categories.
Other types of seizures can be a lot trickier to see. There are peti-mals or "little bads", which is basically you're fine and give one big jerk then it's done. There are absence seizures, some can last all day, and some can last a second. Those ones are really hard to see. They look like someone just got distracted, like you're there physically but not mentally. And with the longer ones - the person having it can still be doing things, going to school, talking, going to work, driving... it's just the person isn't there mentally. If you're unsure - ask a question that's hard to think about. Ask them to say something in another language - not something easy like hello. Or ask them to multiply or add numbers. There are ones where a person is doing something repetitive, chewing, lip smacking, clapping, ect. There are seizures where your body goes limp, and one where your muscles all tense. Some people may be aware they are having seizures, some are not.
Seizures vary in the brain as to location - these are focal seizures. Sometimes seizures start in one area of the brain - in that case there are a lot of treatment options. Even brain surgery where the damaged part of the brain is removed. There is generalized epilepsy which is where it happens in the entire brain.
Sometimes people get what is called a 'aura'. This is basically their brain saying STOP, YOU'RE IN THE DANGER ZONE. Auras can be smelling something funny, migraines, dizziness, feeling sick, among other things. Sometimes this aura is of zero help and there's nothing you can do to stop it. If you have enough time, sometimes you can stop or delay them. High doses of caffeine, sleep, drinking water, and Emergency medications. These medications are usually in the 'pam' family. Midazolam, alprazolam, lorazepam, ect. They usually come in a liquid and are sprayed up the nose which is horribly unpleasant. Some do come in nose sprays - others you draw up in a syringe and swap the needle for a nasal device.
There are many things that can come with Epilepsy. There is depression, anxiety, lupus, Chrons disease. Epilepsy makes you much more vulnerable to other things. There is even something called SUDEP - or Sudden Unexpected Death in Epilepsy. This is similar to what some babies have happen. For no reason at all, you can die. No drowning, banging head on something, just. A random death.
I want to say I left out a lot. This would be huge if I took the time to explain it. There are over 80 types of seizures. Seizures can vary based on every person - sometimes they have unusual triggers, looks, and ways to stop them. Medication does not always work, if we aren't allergic to it - sometimes it just won't work. Drug resistant seizures can be very obnoxious, since theres not ways to solve them.
Side note: Epilepsy is NOT cure-able. You will always have it, but it is possible to out grow the epilepsy, and not need to take medication anymore. In that case it is possible for it to come back.
Another note: Seizures may be awful to go through, but they are equally as awful to watch. For people who are out there and watch loved ones have a seizure it is horrible.
To readers: You can send me a message any time about any questions. I'm not a doctor, or a expert. But I may be able to help answer some of your questions.
To anyone who has epilepsy, stay strong. And hold in there, I know it's tough.
YOU ARE READING
Rising from Ashes
Non-FictionThis is my story. Not a fantasy. I don't want pity, I want you to be aware. This books is going to be about Epilepsy, and my struggles with it, how I discovered it, and the horrible things that go along with it.