The Pain of Having Epilepsy

I am so thankful for experience project so no one can see my tears while I tell my story. I experienced my first seizure when I was about 7 years old. My step dad had picked me up by my throat, threw me across the room and my head hit my hard wood toy box. I woke up disoriented to my mother asking me if I was okay but she did nothing except told him he might have hurt me and he just looked at me and told me to get up. After a while of abuse my mother finally divorced him about a year and a half after. Over 2 years went by I had been having small black outs, staring into space and my speech would be gone for those few seconds. My mother did nothing and my older sister by 8 years kept telling her that she needs to take me to a doctor. My mother kept ignoring her. My sister stood up for me again telling my mom that if she did not take me she would call child services. So finally she took me. After all the tests done on me, I was diagnosed with absence seizures. They put me on depakote which made me tired so I would not take it. 11 years later I started having more and more (about 20-30 in a day) so I had to go to the doctor to get meds. They had me try all kinds of medicines. Some did nothing, others gave me bad side effects and an other made me psychotic while I was on it. Now they have me on lamictal and keppra because just one won't work. They control about 95 percent of the seizures but not all the. If they change my meds again, there is only a ten percent chance that they will work. Living with it is no fun. Even though I might not have such sever ones, it still interferes with allot of my life and makes it hard. One of the worse things is that I can't drive. I have to walk my daughter to school in the freezing cold and rain, same with appointments etc. I have to ask for a ride to get groceries or other errands I can't walk and do, rather it would be my husband who gets irritated or someone else. I can't just go for a drive to calm down after an arguement, can't take my girls for special trips, you get the point. I am deathly afraid when I get the flu. A sudden drop in any seizure medications can cause you to go into a seizure you can't come out of. My doctor never told me that before giving me any meds. I've been hospitalized twice for that. The first one almost killed me, showed a few signs of a stroke and I lost some of my memory from it. And the other thing is I am not supposed to work although I still do but few hours. If I don't I feel useless. My medications and seizures make me tired, I loose focus when concentrating too hard and have anxiety attacks. I have so many goals I want to achieve and won't give up on and I have to set an example for my girls. I try to show them to do the best they can regardless of what gets in their way. Success can not happen with out at least trying. I can say, that with all of the bad things that have happened to me throughout my childhood (which has been allot) and life, that this is the worse because of the limitations it puts upon me and my family. 

freebird79 freebird79
26-30, F
8 Responses Mar 25, 2009

I began having black outs and losing huge chunks of memory when I was 11. At 13 I began having partial seizure and severe nose bleeds and was misdiagnosed with meningitis. At 15 I had an episode of seven seizures that put me in ICU for three weeks and almost killed me. At 25 my biological father informed me that my grandmother passed away at 32 from a seizure she never woke up from. Now at 29 I am taking a combo of Dilantin and Tegretol daily 1000 mg to control my seizures. It controls about 70% of the time and you already know the rest. It is hard on anyone who has gone through the diagnosis. Being misdiagnosed and now having to take meds that still dont work for my gran mal seizures sucks. But I press on because I know that they would be a lot worse without the meds. And even though there are a lot of things we can't do, you are already doing so much more than you think. Those little girls are so lucky to have a mommy who wakes up I the morning and walks them to school knowing that her body is essentially ready to turn on her at any moment. It is so awesome that you are such a great mom. Keep fighting girl. I am always here if need some encouragement.

Having epilepsy can be hard to live with and feels like your stuck in life but there are ways to Turn all that around and live your life to the fullest if you have the right support to be there for you.

My old stepfather claimed I was faking having seizures when they first began at 11. I have also had a hard childhood too.

i am 21 now, but i was first diagnosed with epilepsy when i was 5. i have the absence seizures, stare into space seizures, but i also have the grand mal seizures. so i know exactly how you feel, with having seizures you can only do so much, but trust me, not having kids, or having abuse cause you to have epilepsy, i know exactly where your coming from. and right now i am taking lamictal and depakot, which doesnt work, but i feel your pain

I'm in the same boat now...

i relate to this completely i too have 2 daughters but am on my own its tough out there and i feel all the same things you do .Love this post at least we can share x

Thank you for sharing this with us. Your positive attitude and need to set a good example for your children despite all you've been through is inspirational.

wow i wish i could meet your dad thats to bad some day we will find away to stop epilepsy we have to.