My Story

[chris]

I have only had about 8 seizures since I was 13 I am now 28 my own doctor did an EEG and MRI but it came back clear so he just said these things happen to me it is bad luck as I have warning he told me I could still drive as long as I pull over as soon as the waring starts. My partner and I were away for a weekend when I had a seizure in a night club we ended up in the ER and the doctors told him as soon as we got home to go to my GP. We did and again he wasnt too worried but Adiran was so we went to see his GP within minutes I was being told I couldnt drive for six months and I had to take medication for the rest of my life. What a shock it was for me I was a mess my family didnt want me to take the medication me having Epilepsy was scary for them ( they have never seen a seizure). Adrian and I got a second opinion from a Nuro and she was great very understanding, she explained that looking for epilepsy in an EEG is a little like fishing sometimes times you catch it other times you dont. Adrian and I broke up a few weeks ago and I now realize when I comes to coping with having epilepsy I am on my own. That is why I am here now a least people understand. I believe in telling people I spend time with about my epilepsy as if I did have a seizure they know what is happening but I family think I am making to much of a big deal out of nothing. What do other people do? (sorry if I bored you)

[Birdbomb]

Welcome Chris.

I can totally understand your situation. Loss of independance and lack of understanding from family and friends is more devistating than having epilepsy IMO. You are right to try and educate others around you but if they choose to deny the situation, that is their problem and not yours.

It's hard to deal with a chronic illness on your own, but you do it one step at a time. Find your own support system, like you are doing now, Talking to others who share the same situations. You may even want to seek a local support group in your area.

You are not alone. Did you know there are over 2.5 MILLION people in the USA who have epilepsy? Most don't talk about it, but you'd be surprised but the number of casual aquaintances who's lives are touched by epilepsy.

I printed up a flyer to take to work with me. It had a description of seizures, what to do and what NOT to do, and when to call for EMT's. I printed another one and hung it on my kitchen wall where everyone who came into my house would see it. The hardest people to educate are those who love you. They don't want you to be "ill" so they choose to ignore it, or they are afraid.

But you know what, John Lennon said it best, "Life is what happens while you're busy making plans" So be flexable, and deal with your life one day at a time. Surround yourself with positive, caring individuals, if you can find them. Your own attitude will be THEIR guide.

[Bernard]

Stacy (my wife) told me all about her epilepsy when we first started dating. I didn't quite understand just what that all entailed at first, but I'm glad she was open and honest with me.

[hannah]

Hi Chris,

I am new here too and going through the same thing.

I am trying to come up with a wallet card to carry with me in my purse.
I have a friend who has a plastic id card printer and I am going to have her make up my wallet card. It would have essentially all my information printed on it, but I don't know what all to include. Any suggestions?

Birdbomb, can you share with me the details of your flyer that you made up?

Best Wishes,

- Hannah

[Bernard]

I would think listing the meds you are taking might be helpful (and perhaps instructions on what to do if you have a seizure on the back).

[Birdbomb]

It was a combination I had made using stuff off the internet.
I really wish I had another copy but it was basicly only things that would pretain to MY situation. And it worked out quite well. I handed copies to the supervisors and posted one at the time clock. (I'd seek peeks to see who was reading it, then I'd approch them later and ask if they had any questions.

It's amazing how well this type of information was recieved. Only 1 supervisor had a problem, she was phillipino and very superstitious.

I also printed the Recovery guide but I can't upload the documents. Besides almost everything I have is printed up on WordPerfect (not compatable with MS) I can send as an attachment but unless you have WP9 you won't be able to open this.

HOWEVER>>>

http://www.epilepsy.com/epilepsy/firstaid_download.html

http://www.epilepsyfoundation.org/about/

both have excellent charts you can print.

Simple Partial Seizures

People who have simple partial seizures do not lose consciousness during the seizure. However, some people, although fully aware of what's going on, find they can't speak or move until the seizure is over.

They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure. And they can usually remember exactly what happened to them while it was going on.

However, simple partial seizures can affect movement, emotion, sensations, and feelings in unusual and sometimes even frightening ways.
Movement: Uncontrolled movements can occur in just about any part of the body. Eyes may move from side to side; there may be blinking, unusual movements of the tongue, or twitching of the face.

Some simple partial seizures start out with shaking of a hand or foot which then spreads to involve an arm or a leg or even one whole side of the body.

Emotions: A sudden feeling of fear or a sense that something terrible is about to happen may be caused by a simple partial seizure in the part of the brain which controls those emotions.

In rare cases, partial seizures can produce feelings of anger and rage, or even sudden joy and happiness.

Sensations: All five senses -- touch, hearing, taste, smell, and sight -- are controlled by various areas of the brain.

Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.

For example, a room may suddenly seem narrower, or wider, than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.

If the area of the brain involved with memory is affected, there may be disturbing visions of people and places from the past.

Sudden nausea or an odd, rising feeling in the stomach is quite common. Stomach pain also may, in some cases, be caused by simple partial seizures.

Episodes of sudden sweating, flushing, becoming pale, or having the sensation of gooseflesh are also possible.

Some people even report having out of body experiences during this type of seizure. Time may seem distorted as well.

In many ways, our usual, comfortable sense of familiar things and places may be disrupted by a simple partial seizure.

Well-known places may suddenly look unfamiliar. On the other hand, new places and events may seem familiar or as if they've happened before, a feeling called deja vu.

Simple partial seizures can also produce sudden, uncontrolled bursts of laughter or crying.