Welcome to the group. As Candi says, feel free to share your concerns and don't be shy about asking us questions. I try to be here as much as possible but sometimes family can be a bigger burden than my ep, docs, meds, etc. My story is posted too.
Good to hear from you. Yahoo on that seizue-free period !!!
It's great that your teachers are working with you. That certainly must relieve some stress that school brings. They belive in you...as we do too.
Lamotrigine had me sleepy and dopey when I first taking it but that passed. Before my lamictal days, I had heavy acne due to one of meds. The doc suggestesd that I find a good acne facial cleanser as well as a moisturizer. That helped me a good deal. Lamic was one of the meds eliminated after my lobectomy in '02.
Wish you continued days of seizure-free activity. Keep up the good school work.
PS. Candi, I'm a frap freak, carmel iced coffee, etc. Starbucks is getting out of my price range so they might be losing me soon...but not totally.
We all need to ramble from time-to-time for whatever reason.
In short, do you recognize any repeating feelings(auras) prior to a seizure? Something like butterflies in the stomach or a tingling sensation. Or even a smell? I had those warning signs during my first 17-20 yrs of ep. Then they simply disappeared. Lke you, for some reason I knew a seizure had passed.
How heavy a load are you considering carrying? Initially, I carried a full load but seemed to have an increase of seizures during mid-term tests and finals. Seizures can piggy-back stressful situations. Once I cut my load in half( doc's suggestion), I had fewer problems. I had to learn that everything doesn't have to be done at once. My health was more important than finishing college with my friends.
You will find the pace that is right for you. It may be slower than you first anicipated, but do your best. I know it is hard, a big adjustment. YOU CAN DO IT.
Glad to hear from you and know that I didn't unnerve you. If you're like my mom, you'll relax some but jumping at any movement that seems unusual. Following surgery, it seemed to have started again. I know, "I'm not a mother."
Be as calm as you can be cuz Audra will sense your fidgetiness. Is that a word?
I don't recall if Candi mentioned anything about a baby monitor. That might help you relax.
Have you checked with the doc for any info about support groups that you and Audra might join. That is a wonderful way to meet others with ep and their loved ones. If you're in the Vegas area, you're welcome to join the one I participate in.
I've read alll the posts that you and Candi have submitted.
There is no reason why you can't have a "normal" life. Society has brainwashed many people to believe that others with med problems are inferior or incapable of having a full/productive/happy life. Especially those with ep. Yes we can!!!!
I have met the guys from Pawn Stars. Wonderful group of people who are very supportive of the epilepsy community. Btw, they will be hosting a Poker Run for epilepsy this coming Oct. 4.
In addition to the Pawn Star family, there are some professional sports felllows who live daily with ep. Samari Rolle of the NFL comes to mind.
I have been on Keppra since its research days in Mpls. I had none of the mood swings problems that others have dealt with. I did experience the typical unpleasantries of feeling dopey and tired.
Be patient with the doctors but do ask all questions that you can think of. Have that notebook ready. There are no dumb questions. Not asking is the big problem.
Back to being "normal". I went to college. I didn't like when my docs asked me to carry fewer credits but I understood why. Stress of carrying a full load was increasing my seizure activity. I worked full time with the Mpls Public School District until stress of 40 hrs/week seemed to be aggravating the seizures. Another adjustment that I understood. I am now doing volunteer work at an elementary school. Though it is now summer break, I will return.
Find out your limits, triggers, stress points, etc and go from there. It is not always easy but it can be done. Your life hasn't ended because of an over-active brain.
My initial seizures looked like the petit mal, aka simple seizures, when all this started in '75. The EEGS showed no seizure activity.
An EEG I had a few years later showed some activity. To the docs surprise, the activity came from an area that generally didn't produce the simple ones. I was then diagnosed with complex partial seizures, then known as psychomotor. Too much activity for the staring spells but not enough to be grouped with the gran mal. My mom freaked out!! "What?!!. How could a mistake like that be made?" I, as usual, remained cool. "Okay, what now?" is what I simply asked the docs.
I laugh about it now. Not this one. Not that one. Somewhere in the middle. Fit me perfectly since I am a middle child.
You overreact? My mom's words to me are always "You're not a mother. You don't understand." UGH!!!!
Let Audra know that there is nothing wrong with being different. Just imagine if we all looked the same. Boring world. Before I began living with ep, I was different. Too organized, great with kids, loved to read, etc. Wore a tuxedo instead of a gown to my Senior Ball. Different is cool.
I learned who I could trust as far as friends go. Most scattered after witnessing a seizure. It confused me more than it hurt me. Why are they running away? As time moved one, I simply let the runners go. Their loss.
True friends will be there regardless. Two girls have always been by my side since the day we met. Met G in '66 and V in '68. Two beautiful people. I have made many lifetime friends along the way. I know it is difficult for a young person to understand but as time heals the hurts/disappointments, the abandonments will feel like a relief/blessing that could possibly strengthened her character. It certainly did mine.
Ronda, my mother told me after the changed diagnosis that she was glad it was me and not one of my other siblings. She went on to say that she felt that I was the only one of her kids who had the strength/stubbornnes to handle the seizures. I wasn't mad at her cause I knew what she meant. I have never told her that I had been thinking the same thing.
I shared that with you because I feel that many times we are handed situations that we can handle but we have to learn how to and want to be stronger than what has been put on our plate. Hard-headed, stubborn, individual. Make sense?
Canid, thanks for info about the age limit. Dana and I have been forgetting to ask you about it.
Yes, that is me in the turban. Dana is standing beside me.
My mom is still terrified about my ep. She jumps when I tap my foot or fingers to the beat. "Don't do that!! "Why?" "That's what you do when you have a seizure!!" "Chill out mom, how am I to know?!!!"
I lost consciousness during my seizures. It was like my brain went on pause cause I had/have no recall of what happened. I knew I had one cause of the loss of time. The 1st years I would need to nap for a short while. As time passed, the seizures changed and a nap was no longer necessary. Eventually I took them like a sneeze. Had one and simply continued doing what I had been doing. I often kept doing what I was doing prior to the seizure. Washing dishes, changing clothes, changing bus lines. I moved on automatic. Though there were a few where I needed to take a break.
The way I was rejected, the meds, and breaks from school bothered me more than the seizures did.
Since Audra isn't interested in reading up about ep, why don't you? It would be a big help to both of you if you were able to ahave some understanding of what she might be going through. It would probably be beneficial to her medical team cause you could gain a better understanding of how they are attempting to approach Audra's care. You'll find many questions to ask the docs once you begin reading.
You've read my story. Yeah, I have been through alot but not as much as others that I have met. Meeting others with ep(when I lived in Mpls) helped me to see how mild my case is. It was just hard to control. That actually fit my personality since my mom has often told me that I was her hardest one to raise. Stubborn, simply stubborn.
If Audra would like to share with me(if it's okay with you), she is welcome to do so via my email since she might be hesistant to put it out on these boards.
Like Candi I'm not a doctor but have much experience with living with epilepsy. I had my 1st one 40 yrs ago shortly before I turned 14. I'm the only one in my family with ep. Meningitis.
Candi has shared with you, and more, what I would have if I had been quicker to reply.
The side effects can be scary...and very frustrating. I experienced those feelings too. They passed until it was time for an increase, new addition, or elimination.
I have found many books about epilepsy on Amazon. I too feel that knowledge is invaluable.
I understand your daughter's frustrations. In my early years, my mother tried to keep me at arm's length distance from her. What teen wants their mother watching her bathe. Showers were out!!! Drove me batty. Forty years later and she still tries.
I feel that once the fears and uncertainties have settled/disappeared your daughter will learn to adapt to what is safe/wise for her to do. She will move forward and so will you.
Ronda, read my story also. The young lady standing next to me is a dear friend who too has ep. Dana had brain surgery months before mine.
I'll contact her to let her know that her input too would be appreciated.
Candi, I'm still here cause you know I'm not into Facebook and that other social media. NO technology whenever possible!!
Keep asking questions, Ronda. This includes any questions your daughter(or family), might have.
I too would like to welcome you to the Community. Like Candi, I'm no doctor but do have years(40) of living. with ep.
Despite the eyewitnesses, including the docs, my initial eegs showed no seizure activity. My pediatrician threw the "psuedo" card at me claiming puberty or personal issues. I was frustrated whereas my mom was P.O'd.
We didn't have phone cams then so it was our word against the tests.
Candi has offered you a lot of helpful info. Please take her words for what they are...someone who knows, someone who cares. I wish I had her wisdom/concern when all this started. I sure would have helped my mom.
Keep in touch with us. Please feel free to ask me any questions. Epilepsy can be a lonely illness but you don't have to be alone when living with it.
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