Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I have had epilepsy now for about 10 years. When I was first diagnosed it was no big deal because I was so young, around 9 i think. But now as I am getting older I am realizing that this can affect my life a lot.
I found out in the 4th grade that I had epilepsy by having a seizure in front of the entire school probably one of the most embarrassing moments in my life. My parents had no idea what epilepsy really was when this happened and since I am adopted they didn't know if there was a family history or not. They got in contact with my birthparents, who luckily are 2 amazing people and are still active in my life today. My birth-mom said that her sister has epilepsy and that she has struggled with it for a very long time. We told the dr this and so she concluded that it was a genetic thing and put me on trilepital. She also put me on ADD meds and RLS meds which I didn't need. We had to move so I got a new dr who immediately took me off the ADD n RLS meds saying that they were unnecessary. He soon took me off me trilepital and said that we will see what happens with me off meds. I did good for a year or so then my freshman year of high school I had a seizure in my kitchen right before going to school and that was when I first noticed any sign of an aura. I went back to the dr and he gave me choices of meds and Keppra seemed like the best choice for the time being. I had irritation issues at first but now it is much better and I only snap occasionally. After that seizure I did not have one until my senior year that my parents and I just concluded to be sleep deprived. Recently, since being in college, I have had 2 seizures. One was in my dorm room where I ended up falling out of my lofted bed and the other was the night before my friends and I were taking a road trip to Colorado during winter break. These last 2 episodes is what has put me over the edge. I don't know how to deal with what is going on. I am a 10 hour drive away from home and I don't really have any close friends here. Everyday seems to be a struggle when I have no one around who understands or at least is trying to understand. I am trying so hard not to think about the future and what might happen. Will someone want to marry me or at least date me? Will I be able to get a job? Will I be able to have kids? I just don't know how to feel about any of it. I am scared of what may become of me... I don't want to have to be dependent on someone to take care of me for my whole life. I want to be able to live on my own without the fear of something bad happening.
I found out in the 4th grade that I had epilepsy by having a seizure in front of the entire school probably one of the most embarrassing moments in my life. My parents had no idea what epilepsy really was when this happened and since I am adopted they didn't know if there was a family history or not. They got in contact with my birthparents, who luckily are 2 amazing people and are still active in my life today. My birth-mom said that her sister has epilepsy and that she has struggled with it for a very long time. We told the dr this and so she concluded that it was a genetic thing and put me on trilepital. She also put me on ADD meds and RLS meds which I didn't need. We had to move so I got a new dr who immediately took me off the ADD n RLS meds saying that they were unnecessary. He soon took me off me trilepital and said that we will see what happens with me off meds. I did good for a year or so then my freshman year of high school I had a seizure in my kitchen right before going to school and that was when I first noticed any sign of an aura. I went back to the dr and he gave me choices of meds and Keppra seemed like the best choice for the time being. I had irritation issues at first but now it is much better and I only snap occasionally. After that seizure I did not have one until my senior year that my parents and I just concluded to be sleep deprived. Recently, since being in college, I have had 2 seizures. One was in my dorm room where I ended up falling out of my lofted bed and the other was the night before my friends and I were taking a road trip to Colorado during winter break. These last 2 episodes is what has put me over the edge. I don't know how to deal with what is going on. I am a 10 hour drive away from home and I don't really have any close friends here. Everyday seems to be a struggle when I have no one around who understands or at least is trying to understand. I am trying so hard not to think about the future and what might happen. Will someone want to marry me or at least date me? Will I be able to get a job? Will I be able to have kids? I just don't know how to feel about any of it. I am scared of what may become of me... I don't want to have to be dependent on someone to take care of me for my whole life. I want to be able to live on my own without the fear of something bad happening.
I see you are in TX. :) I lived in a Few places in TX. Been over 20 YRS since I left. :) Last & longest place was Dallas/Ft Worth area. :)
So, were you able to do any 'suggested homework' last nite? :) ??? The DR who gave you the ADD & RLS meds. Did she run a genetic test when you informed her about your Aunt? How about the 'new' Doc? Do you know or suspect Why you had the most recent seizures? Inadequate sleep, missed meds or taking meds at irregular intervals, Alcohol Consumption, Stress of Any kind? How about your Diet? A 'Healthy' Diet Does help meds work better. Do you know there are 'Diets' that can control seizures in some PPL? Were your seizures Witnessed by Anyone? What Do you know about Your Seizures? What Kind/Type and Where the Focal Point (Where they originate from in the brain) is? You mentioned you now know what 'Aura' means. Does your 'aura' give you enough advance 'Warning' to confide in someone or find a 'safe' place to lie down?
Now, answers to your questions. :) Friends: In our World of Epilepsy, it is Hard to find PPL who understand or who Want to understand. When it comes to seizures, Myths Still abound. We soon find out Who our True Friends are. :) An article I read Claimed Everyone will have at least 1 to 5 True Friends in their Lifetime. The majority of those we meet are just acquaintances. :) And the rest, those who are unwilling to Accept you as You Are, well, they aren't worth Your Time. Cuz, you are Still a 'Normal' Person. Whatever 'normal' means. :) :) I was in college at your age. I had no clue I had seizures as an Infant/toddler or Silent Seizures (unnoticed) growing up. :( I think my Mom sent me to find a husband. :) And I did w/in 6 mths. I have no recall of attending classes, buying books, associating w/ others. :( Why? Let's just say I suffered a traumatic incident. Suggestion. :) Consider finding others in Your School who have Epilepsy. You just Mite be surprised to find you aren't the only one. :) You Aren't Alone! And they Would Understand & maybe even Help w/ advice/Tips/info or just Support. :) You could post a Message in the Nurses or Counselors Office or on a Bulletin Board and have them contact you. Start a 'mini' Epilepsy Support Group. :) In the meantime, you got Us. :) I have talked w/ numerous College kids w/ Ep. The First thing they did was talk w/ Counselors &/or School Nurse. So, if they had problems, Someone knew. Plus they were given extra Time, if needed, to complete homework or tests, depending on seizure activity. Your Nurse/Counselor will talk w/ your teachers. Next: Become Your Own Advocate! Learn All about Epilepsy. From Us from the internet. Educate yourself. Overcome Your Fears. Do Not Let Epilepsy Rule! Tell others. Speak Up! Shout it Out! That is the 'motto' of Epilepsy PPL, now! But, if you aren't ready for That, At Least, Teach, those who need to know, Proper Seizure First Aid! Next is Finding a Neuro. School Nurse Should be able to recommend Someone. If you don't have Insurance, then contact the Nearest Epilepsy Foundation & ask for assistance. EpilepsyFoundation.org will have That Info. :) You Need blood Levels Drawn. You may need an increase in Dose or an Add on. It is Important. But, you Should Know That! :) But, do some Research about the GARD Diet first. coping-with-epilepsy.com has Great Info. :) Discuss it w/ a Neuro. (Take Info w/ You) Or a Nutritionist. :)
Dating. Yes! There are guys out there who do not consider Epilepsy a Problem. Same w/ Marriage. I've done both. :) Was married Twice after my Diagnosis. And Epilepsy was accepted by both. I have been married for over 20 yrs now. :) Kids: I have 2 Children. Adults Now. Course my Daughter ( who was diagnosed at age 27 w/ Ep) was born B4 My Epilepsy Diagnosis. She witnessed my First Known seizure as an adult. She was 5. :( But, didn't tell me till she was 18-19. I Think she blocked it out of her memory till then. My son was born 10 Yrs after my diagnosis. I was Finally on a medication that Controlled my Seizures. Another subject to discuss w/ your neuro, if you decide to Stay on meds: Future Pregnancy & Meds.
Jobs: Employers are Not Supposed to Discriminate against PPL W/ Disorders. But, choose Your Career Carefully. Make sure it is 'compatible' w/ Epilepsy &/or meds. Common Sense. All med labels say: No operating Heavy Equipment, climbing Ladders, No Driving (unless Seizures are controlled for over a Yr) Same holds true w/ a seizure disorder. Are you considering getting a Job soon? Or will it wait till college is complete? :)
Independence? Consider a Seizure Alert Dog! :)
Acceptance of Epilepsy comes to All of us. But, it comes Faster to those who Deal w/ it in a 'Positive' Manner. A Lot of Famous PPL, Past & Present Have had Epilepsy. Kids w/ Epilepsy Camp Logo: It Takes Brains to Have Epilepsy! You May be the next Genius, Artist, Author, etc. Just Take It One Day At A Time. :) Educate Yourself & Try to Open up to others. :)
BTW: I don't think I would want to sleep in Loft Bed again. :) Mattress on the floor makes more sense. :) No Baths. Tell Someone when you shower. At least till you know you have control again. Say 3 mths from now? :) If you meet Fellow Ep PPL, You Can 'Buddy Up' :) That ain't being Dependent on someone. Just More Common Sense. :) IF you feel it does, then consider this. How about when a person watches out for you, you do something nice for them. You watch out for them. :)
Love Candi Thank You for Reading. Hope It helps. I'll be here for you. :) HUGS!
When my husband and I first started dating, we went camping together and I had a grand mal, I told him that it was ok and that I would understand if he didn't want to see me anymore...He just looked at me and said "Do you see me going anywhere"? We have been together ever since. He also went out and got all sorts of books to learn all about epilepsy and what to do for it.
I remember as a kid all my friends would go the the dance hall every weekend. The thing about the dances is that the strobe lights can cause me to have a grand mal. Well, I didn't want to sit at home and not be able to hang out with my friends, so I took the chance and went anyway. Pretty much every weekend I would end up having a grand mal, but at least I got to hang out with my friends.
Trust me, even after 33+ yrs of epilepsy, I still get sooooo frustrated and upset and want to just scream.
The last thing I want is to have to rely on others to have to take care of me, so I will insist that I can do everything on my own and I don't need anyones help...Well, unfortunately that is not true. I can take care of myself for the most part, but every once in a while there are things that I cannot do without someones help.
Of course the most humiliating part of epilepsy is having seizures in front of others. Jerking, rolling eyes, slobbering, peeing your pants. It's all so great.
I work in a dept. store at the mall (JC Penneys) and am around people all day and everyday of work. I have had a grand mal on 2 different occasions. Customers everywhere watching...:(
What I have to do is try my hardest to put it behind me and go on with my life. Even after 2 different grand mals, I still have not lost my job. That's a good thing.
Although epilepsy is a big deal, you still have to learn to live with it and take it with a grain of salt and even have a sense of humor.
I am able to laugh about different things I have done while having a siez. and my kids and I have different names for them too. My daughter and I call it a "Drop and Drule" and my husband calls it a "Drop and Flop".
The main thing is you can't let it get to you and ruin your life. You have to take care of yourself and do your best to enjoy what's going on in your life. Try not to stress either. That's bad at causing seiz.
I hope this was a little help for you.
Take care, Tomi.
Thank you so much for all the information that you have given me! :)
Thank you again for sharing and you have actually maybe given me a little bit more hope for my future to come. :)
My name is Sam and I'm also a college student with epilepsy. This is my first year and I've felt a lot of what you just explained. Luckily I have an amazing roommate and some really cool suite mates that help me out. I do feel sometimes like I can't hang out with the people around me or really become good friends. I feel like a burden. But, I do have a few people that stay close to me despite my condition including a wonderful boyfriend. There are those willing to see past the scary moments and you'd be surprised to find out how many people really are open to learning more about epilepsy(not to mention how many people have it, I've met three people already since being in school). Also, I've had a few jobs and I have one now. My employers have always been very understanding which is wonderful. Don't worry about being dependent epileptic and non-epileptic alike need others to lean on every once in a while.That's not to say independence is impossible. Learning more about your seizures and how to control them is a big step and the seizure alert dog is a pretty good idea too =) . Oh yea, I was on Keppra for a while. I think over a year? But i absolutely hated the irritation and mood swings. Now I take Lamictal and it's such a relief as far as emotions are concerned. In fact I think it makes me calmer, but if Keppra is working well for you that's great. =) and also I lofted my bed at the beginning of the year too. Not a good idea =( . We brought it down. I'm really glad neither of us were seriously injured. Keep your head up and don't stress to much.
I wish you all the best!!
Sam
Did it seem to you like the trileptal was working? Why did they change it to Keppra if the trileptal was keeping you seizure free?
About finding a boyfriend: guys like to feel like heroes. Rewarding them with praise for their attempts at understanding helps make you a desirable catch - try reading the John Gray books - Men are from Mars, Women are from Venus.
Haha thanks for the suggestions. I might check that book out.