Candi, I understand what you're saying about "epileptic" vs "having epilepsy". Coming from the black community, I had to fight for my identity of being "angie" vs being an "epileptic". I had a personal battle within my race so that I was recognized for myself, not an overactive brain. Though I did have support within the Black community, I also had my biggest battles there too.
Cuiling, do you live near an EFA(Epilepsy Foundation of America)? If so, think about asking them if they have a support group. Posssibly check a local hospital.
I live in the Vegas valley and participate in a monthly group that is managed by my doc. It does a world a good to be able to share stories with people who fully understand the seizures, meds, etc. But for right now, we are your support group.
Thanks Candi for your supportive words about my posts.
Hang in there Cuilling. Many answers seldom come when we're looking for them.
I too wish I had had this support back in the 70s when my ep began. My mom certainly needed some support.
Whenever you do get an official diagnosis of epilepsy, you will never be an "epileptic." You will ge someone who has epilepsy. The term "epileptic" is a descriptive word that unfairly puts limitations on those of us who have epilepsy. We are expected to be able to only do so much. Much else is supposedly out of our abilities. That assuption is totally wrong and prejudicial.
Kids. Wow, kids!!!!! I started doing volunteer work with kindergardeners back in the mid 80s. I was taking a break from college. They were wonderful and very supportive. When a student asked me why I wore my medic alert bracelet, I simply gathered the class together. I explained to the kids, using words that they understood, what ep was. Yes, they had questions to ask me. "Can I catch a seizure like I caught my brother's cold?" "Are you contagious, Miss Angie?" "Are you taking your meds like the doc said?"
I remember explaining seizures like a power failure/shortage in the brain. The kids understood and stayed on the alert since that day.
Teach them early so that you can possibly eliminate some of the myths that are centuries old about ep. You just might be surprised about their reactions. If you show fear, then the kids have a reason to be afraid too.
I never learned to drive since my seizures started about a week before I turned 14. Without a car at my disposal, I learned to get around on the bus, commuter trains, by foot. Not driving didn't stop me from getting to where I had to go. Soon people were asking me where places were and how to get to them.
Yes, ep might take some things away from us. But we must make those adjustments so that we don't become the "epileptic" that society thinks we should be. This is also a time to test your inner strengths. Big adjustments but it can be conquered with a strong heart and will.
You know your kids better than we do. How do you feel they will respond to you talking to them about ep? Check Amazon for books about ep and kids. There are several.
BTW, after my brain surgery, a 5-yr old wanted to redo it for me. He planned to put a computer chip in and have me programmed as he wanted. His twin would often greet me with "I took your brain out last nite, Miss Angie, and made a brain sundae. I gave you my dog's extra brain!!" They kept me laughing.
Happy to be able to spread some support or lend my ears(this case eyes) to you.
What makes one seizure differ from another? I would say it has to due with origin of the seizure. Where in the brain did the seizure begin. Since we have regions in the brain that are for specific functions, I would suppose that wheneve that area is disrupted that the outcome is going to be somewhat different than when another area is disturbed.
My initial seizures were recognized to be simple seizures, aka petit mal. Initially, I was simply daydreaming. But when the actions changed, the docs had to take another look. According to my mom, and others who saw them, I was smacking my lips, pulling at my clothes, turning my head to one side, tapping my toes, etc. Those physical actions told the docs that I had something other than simple seizures. Since I was having no convulsions, it was concluded that I had complex partial(now called complex partial). It was about that time that something showed on the EEG. The area of the brain that showed seizure activity didn't generate simple seizures. That seemed to fit my personality better since I was never a simple person nor was I an extremist. Unless it came to how my room was kept or how my clothes matched.
As time passed, I was changing clothes, taking phone messages, or changing bus lines during my seizures. I have no recall of such actions. My brain shifted to automatic drive.
Worried about losing your skills? This could be dure to the seizure location or some of the meds. I had trouble with short term memory. Test time was frustrating. Some meds slowed down my reflexes thus making it difficult to learn sign language. Don't think my difficulties are sure to happen to you cause we all react differently to the same meds.
What meds are you taking? Discuss these concerns with your doc as well as the pharmacy.
I hope I'm making sense to you, cuilling. Use my email to chat whenever you wish.
Welcome to the family. You are still the "normal" girl you were prior to your 1st seizure. Having a medical condition does not take us out of the "normal" society. Most people have something that they feel takes them out of the "norm". Your's simply happens to be ep.
I feel that how you handle/live with ep is a personal choice. I've handled mine since '75 by being a stubborn girl who refused to be controlled by an over-active brain. I learned what I was able to do w/o setting off "additional" seizures. There is nothing wrong with limitations. I say "additional" cause there have been circumstances that may have contributed to seizures(carrying a full load at college, high sugar intake, stress factors, etc).
I have had one, maybe two, seizures that frightened me. I have also had a few that took me away from college a few semesters. Though I have never experienced the Nocturnal seizures, I do feel your frustrations. My initial doctors didn't believe them to be true seizures cause nothing showed on my tests for about 1.5 yrs.
My story, like Candi's is available to read. The young lady beside me is a dear friend who walked me through the preparation/expections for brain surgery. We had the same docs who thought we would be a good match.
Don't quit on yourself. "Normal" is a state of individuality. Do what you are able and continue to find what is needed for yourself to continue to a progressive path.
Candi, as always, is on top of things. She shares many of our thoughts.View Thread
I do feel that personal expierence has a lot to do with that "knowledge" you credit me for. I have learned very much about ep because I have always been open and comfortablet talking about it. It has also been helpful to have the support of my friends, teachers, docs, and the kids I have worked with.
Also, with age does come knowledge. For most of us anyway...lol!!!!
Stress is definitely one of the most popular triggers for seizure activity. During my college days, my seizure activity increased when it was time for mid-terms and finals. I also had "extra" seizures week prior to and during my menses. Yahoo menapause!!!!!
We will have similar triggers as well as ones that seem to be distinctly ours. You seem to be on the alert about what your's our already. Keep working on that journal. No notes, info, or questions should be considered unimportant. All shared info is definitely pertinent to your case.
I didn't do any shaking but I certainly smacked my lips. Changed to my pjs if the seizure occurred when I was at home. I didn't remember changing my clothes. I did so many things during a seizure. I was simply on automatic.
Seizures wiill occur at times that don't always fit with what we condsider our "triggers". Having a seizure can wear us out. Sorry to hear that you're not feeling well. But that often is part of having a seizure. I know it can be rough. But as dw says, here will come a day when it no longer phases you.
Think about calling the efa that is 100 miles away. They might be able to send you some reading material.. Possibly help you with finding a doctor.
So sorry about the long wait til you're able to see a nuero. Do your best not to let it frustrate you out. Frustration, like stress, an be a seizure trigger.
Please follow Candi's suggestions about calendar, notebooks, observations of others, etc. You might be able to pick up on what might be triggering some of them. I've been keeping notes/calendars for 39 yrs. The doctors are always grateful for any info that we can share with them.
Is there an epilepsy foundation in your area. If so, the efa often has support groups. Besides us, you might find a new source of support as well as information.
Hang in there. It can be tough but I feel that we are only dealt the hands that we can handle. We simply have to want to, as we as learn, know how to play it.