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So frustrated.. Need to talk to someone who can relate..

Mon, 03/06/2017 - 17:14
My name is Ashante, friends & fam call me Sha, I am 25 years old. I've been diagnosed with epilepsy since I was five years old, started of small with back to back petit-mals. But after my freshmen year in high school, I've had my first grand-mal tonic clonic seizure episode. That's when I started to take Lamictal, twice a day, and I would still get 2-3 seizures a month around my cycle time. For a while I've been feeling that my cycle has some kind of trigger to these seizures that have been happening to me. I've asked doctors for a higher dosage, but that didn't help me at all. I know I don't have it as bad as the others, but this has been bringing me down and I've been feeling useless to myself. I've applied for a job, which i was lucky to get, I didn't mention anything about my epilepsy cause I knew better that they wouldn't even give me the job. Because I can't drive, public transportation was my only way to get around at the time when I was living in Miami. So one day, early morning on my way to work, I was waiting on the bus and next thing I know I'm on the sidewalk with paramedics over me. Thank god someone, not knowing who because no one was at the bus stop, called 911. I fell hard on my face and knocked a tooth out, and me not having insurance, I had to tell the paramedics to not take me to the hospital, knowing the charges for an emergency room. I ended up having to leave my job because they asked me to go to a Neuro and see if I'm okay to work again, yet again not having insurance I couldn't see a Neuro. I've applied for SSI so many times in FL, now I am living in Georgia and I applied for SSI, got denied again and now waiting on a hearing for the appeal I made. I'm a young woman, who's trying so hard to become independent. It hurts me every single day that I have to depend on someone to make sure I don't fall and break my head. I stay home majority of the time because I feel like I could take my own life with just 1 fall. I am currently looking for a job that I can work at home, that way transportation won't be a problem and I won't hurt myself.. But it's not easy because of the experience that they are asking for, I don't have. Everyday I cry, not because I'm sad, but because I'm so frustrated with my epilepsy. I have tears of anger.

Comments

I know how you feel. Im 38

Submitted by Jamie_58c63c4e15b58 on Mon, 2017-03-13 - 03:49
I know how you feel. Im 38 had since i was 20 or younger. I have  a Vagel nerve stimulator, it doesn't help that well. Everyday it's seizures and there getting longer and weirder. I don't work or drive. Luckily I got ssi ,just keep all your paper work it helps. I don't know if the frustration ever goes away. I wish I could have been more incourging

I'm sorry that you are

Submitted by Ryan Rodriguez on Wed, 2017-06-28 - 20:03
I'm sorry that you are feeling that way.  Knowing that others have it worse isn't something that should make anyone feel better, so I understand.  I feel similarly sometimes when like last weekend I thought I could take a vacation to Ft. Lauderdale and woke up in the lobby of the hotel surrounded by paramedics.  Thankfully, I work for a wonderful organization here in DC that fully supports me.  They even converted an office into a nap room so that I had somewhere to go if I thought it might help prevent me from having one.  I say all this to say that there are so many good employers out there who want to support their employees and I hope you will won't give up the search.  Have you tried other medicines?  I haven't found one that rids me of mine, but different pills had different effects.  Maybe you'll have greater success with another.  Have you tried pot?  I hate the physical act of smoking, but you can get them in gummy bears or blocks of chocolate these days...  

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