Brian submitted his personal epilepsy story to Living Well With Epilepsy to share his epilepsy experience.
Brian’s Epilepsy Story
About 4 years ago I had to accept and learn how to live with a seizure disorder. I’m 29 years old and I experience a headache/migraine and a sense of déjà vu that will at times progress into a seizure.
These seizures began randomly several years ago. Because I lacked medical insurance, I was unable to get proper testing until January 2014.
I have finally confirmed that the episodes I’ve been experiencing for 4 years are actually partial seizures, and are not progressing into convulsive seizures.
Sharing Acceptance
I am looking forward to starting an awareness group to help people cope with life with epilepsy and these new restrictions. I also hope to support the families who now have to grow accustom to this disorder and limitations.
Karen
Yes I agree please start an awareness on here. I’m supporting my seventeen year old son who just recently got diagnosed with Primary Generalized Epilepsy. I’m nervous and not sure what to think and what things can I let him participate in. All he loves is consistent technology. I know that’s not healthy regarding seizures. It’s his strength and he loves it. He is on Depakote and Trileptal for his seizures. So far he is doing very well. Sometimes I lose sleep at night because I get paranoid that he will have a seizure and I won’t hear him so I could help him. The doctor doesn’t know what’s causing his seizures but he said the two severe ones he had were due to lack of sleep. So i’m wondering even if he takes his medication and he loses sleep could he still get a seizure? I also suffer with Bi Polar and my meds are helping me but I still get occasional bouts of anxiety. I’m trying my best and doing research about Epilepsy but I still need to hear from real people and their coping skills. I don’t have any groups that I can attend to help me. So any information on here I would greatly value. Thank you and may God bless you everyday.
charon
one can live a perfectly normal life having epilepsy. consult your doctor and ask about the triggers and just try avoiding them.your child is quite lucky to have your so kind attention to his epilepsy. I am growing with epilepsy since 24 years.i had to face social neglection and felt inferior. but now am great..I even forget at times that I am suffering from seizures. its just normal.
Karen
Thanks for the info. I appreciate you sharing your experiences.
Lori Steffy
Thank you for your story!! I agree also, starting an awareness group would be great! I wish I could start something in the area where I live for people that have epilepsy. I have had epilepsy since I was 2 years old, and I am 46 now and still have seizures. There are many people who don’t understand what epilepsy is, and I am sure there are people who have it and think they are the only person in the area that have it. Thank you for sharing your story!