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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Mimi3

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Wow, I wish I'd participated in message boards years ago! This is exciting.

I just had brain surgery 3 months ago and I'm really psyched. I've had seizures all my life, really, but I was diagnosed at 19. So, I've had seizures for 15+ years. I had scar tissue removed from my right temporal lobe, and thus far, no seizures. I was diagnosed with complex partial seizures, but I've had grand mal and absence, and jacksonian (I think this is tonic clonic) seizures, too. Now I'm experience visual hallucinations, but this may just be an after effect of the surgery.

I am going through a major identity crisis now. I've always accepted the fact that I'd never drive, I shouldn't work, I shouldn't have children, etc. Now I see doors opening for me, and frankly, I'm scared to death.

Of course, I may continue to have seizures, and this doesn't really concern me. I joined the forum because my last batch of seizures -actually, status epilepticus - really scared me. I've been depressed and anxious since this episode; I'm suffering a bit from post traumatic syndrome (which I'm dealing with). I'm just interested in talking with and learning from others who have epilepsy.
 
Welcome Mimi

Life changes is what it's all about here! Well, at least coping with them is. These boards have been life savers for countless people. They are rich resources full of information, a sense of belonging and an entire community at your fingertips! There is comfort in finding others who share your experiances.
 
Hi Mimi! I'm one of those who don't believe that epilepsy ought to hold you back. :) Yes, there are certain things like flying airplanes that we probably shouldn't do...but I don't think that we need to settle for second place lives and deny ourselves things like family, spouses, children, careers, etc. Each case is different...but humans are social creatures and need social and physical contact for a sense of emotional well being. There is so much that we can contribute to society. We just need to step up and do it. Myself, I have a wonderful husband, a baby on the way, a wonderful if slightly frustrating career, and have been blessed with a wonderful education and friends. It is time we step up and take our places in society.

Don't let this new chapter in your life scare you. It's a wonderful adventure. Embrace it.
 
Hi Mimi WELCOME
My daughters first seizure was at 14. We are controlling them by making nutritional changes, vitamin and mineral support for brain and body health, and neurofeedback.
Therapy has helped her move through the rough patches, and she is far more mature, and educated about lifes challenges having dealt with this disorder.
 
Welcome Mimi!

I'm new here too, although I've been having seizures since babyhood. I didn't know they were seizures until I was 18, been taking meds since 25, I'm 34 now. The last ten years have been a chicken-egg dilemma, as in is it worse to have seizures occasionally or is it worse to have these darn side effects all the time? I also have hypothyroidism - not related - which complicates matters horribly. Plus migraines have developed over the last five years.

My seizures are from scar tissue in the right temporal lobe, and they seem to be getting worse or maybe just adjusting to the meds over time. I've been thinking about surgery recently due to the chicken-egg dilemma, but it sounds so scary...you are one brave woman. Embrace those open doors! :clap:
 
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