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I'm a writer, and I need your help. :)

Hello! My name is Mary, and I'm an author of speculative fiction - fantasy, sci-fi, steampunk, etc. My current work in progress is near-future science fiction...and one of my main characters has epilepsy.
As far as I can tell, epilepsy does not get a lot of attention - I am an avid reader and I have never read a book in which a prominent character suffers from epilepsy. Quite honestly, when I first began my research for this story, I was shocked to learn how many people actually suffer from it. Because so little is ever said about it, I had naively assumed that it was a very rare condition. I had no idea how many people have to deal with it on a daily basis!
As a writer, it is very important to me that my stories serve a greater purpose than mere entertainment, and while the science fiction elements of this particular story will deal with issues of human identity and the value of life, I also want to use it as an opportunity to raise awareness about epilepsy. But in order to do that, I need the help of people like you, who are dealing with it from day to day.
In the first place, I don't want to insult you by writing my character's struggles in a way that is unrealistic or inaccurate. I need you to help me keep my facts straight.
Second, I need you to help me understand your struggle on a personal level - the things I can't learn from medical journals and statistics. This is about you, not a bunch of impersonal data.
Thirds, if there are ways in which increased public awareness would be beneficial to you, what are they?
Honestly, any and all information you can offer me will be helpful. Obviously, since I only have one character with this condition and epilepsy has so many forms, I won't be able to use everything, but you neve know what detail might be immensely helpful, and all of it will increase my personal understanding and thereby help me do a better job representing the challenges that you face as a whole.
Again, any information that will enable me to better understand and be a better representative will be helpful. I want to do the best I can to represent you and help others understand.
(Just as a frame of reference, the character in question is male, around age 30. Flashing lights will trigger his seizures consistently, but he also has seizures with no apparent trigger.)
Feel free to ask any questions you need to for clarification or more information about my project or character. Thank you in advance. :)

Comments

Most seizures start with a

Most seizures start with a strange out of body feeling like deja-vu. Mine started at 13 and I thought I was psychic or had esp until I had my first grande-mal at 17 (1972). Your brain functions become confused, the subconscious takes over. Mine were directly hormone related due to the monthly rise and fall of estrogen. This was not proven until almost 20 years later. Because it is a mind/brain matter you feel you should be able to control this yourself but you can't. I now have daily partial partials which are very frustrating but I know they will pass. These cause part of my brain to shut down-I lose bladder control and although I can hear am unable to speak (temporal lobe). Whomever sees this gets
scared if they've never seen it before. My family just waits for it to pass and tell me they know of it because my expression looks unworldly. I think most seizures make one very angry because it is their own mind. Research has helped us understand much but there is so much we don't know about the brain Some epilepsy is from a physical brain problem but others-like mine-are due to mis-fire of the electrical brain impulses from?? Recent studies have shown the brain can make its own estrogen/hormones. Emotion can be affected by this. Although it has not been "proven" I feel emotion has a direct effect on
epilepsy especially when in our formative teen years.
I once thought I was unashamed to be epileptic until my friend kept urging me to get a medic-alert bracelet and I realized hiding it was the only reason. As you said it is a very
common condition but always hush-hush because it's a brain/mind matter- who knows who had it before? One thing I know is many geniuses (Einstein) have and the higher your IQ the more it seems to happen. I have a high one also & know other epileptics
who have the same. Overactive brains??

trigger are different with

trigger are different with each person. Just like the types od seizures. Margie posted most seizures start with deja-vu however not all people get those senses. They are seizures themselves. Epihelp gave you information which can help you some.

Each persons seizures are different. They may have the same symptoms and types of epilepsy and seizures but they are all different.
Understand that with your corrector a change of light can cause a seizure. A light change can be a leaf moving letting a brighter ray of the sun hit. Or some people can't use a computer.
For me I had been written up for daydreaming in class for about 2 years. I had weird feeling in my hand. The teacher would ask a question and I would answer it only to have my answer come out after they had gone to the next student. Those seizures were petite mal (absence seizures) or focal motor seizures. It was after having a grand mal seizure that I went thru testing and finding medications to help control the seizures.
A little information. A seizure is an electrical impulse hitting wrong in the brain. That is the start. The seizure itself is a chain reaction cause by they electrical impulse hitting wrong.
Tests are done and in some cases they find out the cause. I went thru 20-25 different EEG's and they all came back normal. I went thru a weeks testing in which I had all kinds of tests done. Blood tests, spinal tap along with a test which was the MRI of the 60's. It took x-rays from all angles after pumping air into my head. Believe me todays MRI is easier on the patient. All of the tests came back normal. The last test that week was another EEG. In that EEG I fell asleep while it was going. Hey at 13 and going thru a battery of tests you get tired. The found abnormalities (spikes or waves) and they knew where they came from. By knowing that they looked closer in that area of my brain in the MRI. In that closer look they found scared brain tissue. Back in the 60's they said it was before or after birth. Doc and I were trying to find other procedures that might help control my seizures better. In his tests he found the same things. But with the technology his time was between 6-8 YAO.
For me I have been living and dealing with epilepsy and seizures for 50+ years. Since 1970 I have been fortunate to have been with the same neurologists so they know what has been done and all the medications I have used.
Control is a word that means different things. For some it means no seizures period. Some get there. Doc and I know that I will probably never completely seizure free. Doc also knows I want to be seizure free if at all possible. When I was a teen I had several types of seizures. Most were focal seizures. Focal seizures start in one area of the brain. Starting in that area it affects the other side of my body. My seizures always started with my right hand feeling weird or no feeling at all. The scar tissue is on the left lobes of my brain so we have that covered. If the focal seizure generalizes (covers more than that area of the brain) My hand would start rising up. It stopped at times. I was glad they stopped since if it got shoulder high I would go into a convulsion. It would look like a grans mal seizure. Scary for people to see. Want fun in them. The difference was in that seizure I could see, hear and understand everything going on around me. I saw the fear in friends faces/ I hear them telling someone to get the nurse. I heard some saying OHHH I don't want to be around him anymore. So yes it wasn't easy on me or my friends.
Today technology has advanced a lot and in doing that there are newer medications and procedures that help control seizures.
Each persons seizures are different. Each persons medications affects them differently. A medication that works for one person may not work for the next and the same goes for dosages. Think about food. Can all people eat the same thing? Some people can't drink milk. One person loves Italian food and others can't eat it.

As epihelp posted you might get a medical expert to go over things with you. We can give you some information and what we have been thru. But if you write something with just what we say it can do more harm than good. You might call the 24/7 help line and they may be able to answer some of your questions.

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