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My story so far

Hello, I'm 25 and my first seizure was when I was 14 years old. It was at a friends house after staying up all night trying to get a perfect score on "Through the Fire and Flames" on medium difficulty on Guitar Hero III. My parents prayed for me and it really freaked me out (the experience not the prayers ;) Time went by and we thought it was just from the lack of sleep and the all night visuals (like what those warnings tell you before you play actually coming to fruit.)

I can't remember all my seizures, but I believe the next one was two years later when I was 16. It was at another friends house, in the morning again and also after playing video games, but not all night, I got probably 5 hours of sleep.

The next seizure I believe was on a raft trip with my school about a year later when I was 17. I fell into the water and someone had to fish me out. I forgot to mention that I throw up a lot, to the point that my throat is hoarse dry and I experienced the first headache's in my life after these sezures. It was after this seizure that my parents realized this was something more than video games. They took me to a neurologist and I had a few scans done to make sure I didn't have a tumor in my brain. All clear there. I can't remember what advise he gave me then, but I remember he wanted to get another scan done, that was just to expensive for my parents. I can't ever remember if medication was recommended, if it was my parents and I both declined.

I had seizures about once a year, until I turned 21 (yes and started drinking more regularly.) This is when my seizures spiked up to once every one or two months. I had many hospital rides which was annoying because I didn't realize the bills these rides were racking up just to get me to the emergency room to throw up into their bags and get blood work each time, in the end to find out I just needed to go home and rest my body. I'm athletic, and I've never felt more sore from my workouts, than from after a seizure.

It was about this time I accepted I was an epileptic and needed help. I really wanted to know why as well. So I got a family care doctor because at this time I was on health insurance through my work. My family care doctor prescribed Keppra, thats the short name for some long one I don't remember. I was to take one in the evening and one in the morning. This worked, I went a whole year before having another seizure, but I hated that if I forgot to take my meds I risked having a seizure hours later after missing my prescription. I don't normally get stressed out, but this really did and I hate taking meds now because of it. I was on meds for about two years before I lost my job and havent had health insurance to cover the meds, which I didn't mind I kind of wanted to see how my body reacted without any meds, I've heard you can grow out of epilepsy, I don't know if that is true, but I figured I wouldn't know unless I was off my meds, and the time was as good as time as any with no money for meds anyways.

So that's were I am currently and I have seizures once every one to two months. I don't like it but I like not being on the meds, life is a bit more normal without that stress. I do however want to get help, I also went through a very depressing time while I was on my meds and am not sure if that had anything to do with that. But that's my story and I'd love to hear any help at all. I basically feel stuck as far as jobs go because I can't drive. I'm open to anything at this point, even drugs again if I have to, but I'd rather try something else first.

The seizures themselves last about 10-15 minutes, my brother has witnessed most of them and tells me I get very tense, but not very violent. I've stopped throwing up after them and sometimes my body isn't as exhausted as most times. There's about 10-30 minutes of coming back to consciousness where I don't know much about who I am or where I live.

Thanks for your time, I really appreciate it.

-Seth

Comments

Couldn't find a way to edit

Couldn't find a way to edit my post, but my seizure's only last 2-3 minutes, not 10-15, with about 15 minutes of coming back to earth and 10-15 more minutes before I am back to normal besides a headache and feeling like I got hit by a train in every muscle on my body. Not much sounds good to eat or drink after, basically only fries, pizza and soda/Gatorade.

Hi sederqu,  Thanks so much

Hi sederqu,  Thanks so much for sharing your story. It’s important that you discuss any changes in seizure types, frequency, behaviors,side effects and symptoms to your healthcare team, who can help determine what individual treatment is best for you. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy For assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/se... https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist & https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000,contactus@efa.org , where a trained information specialist can connect you to resources,  provide referrals and additional support. epilepsy.com/helplineFor information regarding our patient assistance programs please visit: https://www.epilepsy.com/living-epilepsy/247-helpline/patient-assistanceFor resources on employment please visit:https://www.epilepsy.com/living-epilepsy/independent-living/employment-h... https://www.epilepsy.com/living-epilepsy/independent-living/employment/f... It's also important to recognize that epilepsy is more than just seizures,overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health  It is common for those living with epilepsy to experience feelings of depression: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health... The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyCreate a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects ,moods, or other personal experiences, using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Ale...

Hey, so for me, I’ve been

Hey, so for me, I’ve been through a ton of different medications and even Keppra.  ( I don’t remember the full name either lol ) let me tell you, I’m already sorry they put you on keppra for your first meds. That medication I swear I felt great but my mom for real was like “ elisabeth you’re giving attitude “ and then one moment I’m happy the next I’m crying. Literally I was a mess. On top of that, when I was getting off keppra it for real mentally destroyed me lmao. And keppra didn’t even keep my partial  seizures really at bay, ( I don’t have full blown seizure just partials unless I’m off medication completely, then I have full seizures. ) but yeah I was on like 8 pills of keppra and it didn’t even work smh. But if you want to try any medications that don’t have many side effects I recommend Topamax ( topiramate ( or whatever the generic is called you can look it up lol  ) ( but ask a doctor!! ) 

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