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Epilepsy destroyed my life

Tue, 04/21/2020 - 18:50
When i was 10 years old in 1990 i started getting a feeling like twitchy tingly electricity was shooting through my mouth. It was a seizure aura. The third time it happened i had a tonic clonic seizure, then another one a week later, then a third in school. Then on the same night i had the worst seizure of my life. They called the ambulance in Secaucus NJ and i stopped seizing only minutes before we hit the hospital in Hackensack NJ, twenty minutes away. I came to semi conciousness as we were pulling up and all my brain functions came back, my eyesight being last. I was blind for 10 minutes. They didnt believe a kid could survive a 20 minute seizure, but my stepmom was an RN and she was furious. She swore to the nurses what she saw. Thank God that woman possibly saved my life cause i know the next one wouldve got me. I was only 10 and i didnt know what, or how dangerous a seizure could be. They sent me to Newark Beth Israel childrens hospital diagnosed me with Seizure Disorder and put me on Tegretol and sent me home. I took it almost 25 years. Ive taken a few of the other AEDs, but now im mainly on two. Trileptal for tonic clonic seizures, and i have gone back and forth between the second medication i take for the partial seizures. Either Depakote or Vimpat. Never truly seizure free ever on anything. I, and every person ive been in a relationship with suffered a lifetime of my rage attacks and personality disorders. Lately though im having more seizures and losing my memory, and ive gotten seizures in clusters with a state of some kind of psychosis in between, where i become suicidal, but have no memory of any of it. Only my wife has beared witness to it and im so lucky to have her to take care of me. What if i was alone that night? Interesting though because im not usually that depressed, and i love life. Epilepsy by nature causes depression and anxiety, and these AEDs by nature alter your brain chemistry, and have side effects including suicidal ideation and mood disorders. Epilepsy is scary and complicated and Id hate to believe that my fate is my family either mourning my untimely death, or visiting me in a mental institution. Ive carried this since i was a kid and its taken its toll on me. In 2018 after going in the hospital to go on an EEG to get them seizures. I found out I have right side frontal lobe. So they can and want to do surgery on me, but i dont even know how i feel about that. Im just scared. If i did it, id do it for science, so they could be one step closer to telling a kid in 2050. Dont worry about it, we can do a simple surgery that can stop seizures easily, forever on no medication. I just want the new generation of Epileptics to be informed and taken care of and not suffer as bad as we did.

Comments

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Submitted by keomacau on Wed, 2020-04-22 - 00:30
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Hi, Thank you for posting, it

Submitted by Anonymous on Wed, 2020-04-22 - 08:17
Hi, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are NOT alone, and we do have resources available that can help. If you ever need to speak with someone immediately,  please contact our 24/7 Helpline: 1-800-332-1000, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources, epilepsy.com/helpline , or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/ . We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health. One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find your support network. Contact your local Epilepsy Foundation Epilepsy Foundation, here: https://www.epilepsy.com/affiliates, or contact our 24/7 Helpline, to learn more. Additionally, you may want to consider participating in treatment, seizure and lifestyle management programs, that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. As you stated, it is common for some people living with epilepsy to report experiencing feelings of depression and anxiety. It’s important that you're continuing to address these challenges with your healthcare team who can work with you to help determine what individual treatment plan is best for you. It's also important that you're addressing any changes in seizure types/frequency, side effects, moods, symptoms or behaviors, with your doctors. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. To learn more about the challenges related to moods and behavior for people with epilepsy, visit : https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior . You may also want to consider keeping a journal or a diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, track seizures, manage medications, other therapies, or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 

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