My seizure journey

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Hey guys, I’m a 17 year old girl and I’ve been suffering from epilepsy since 6th grade. So I was around 11 years old . I had my first seizure take place at school during lunch when I was outside with my friends. I fainted and hit my head on a rock then had a seizure. For 7th grade I transferred to a different school and had my second seizure there. Both times they were outside and I was sweating a lot but I still never found out the cause. My 3rd seizure took place at home and I was home alone I knew I had one. For some reason I always turn out to be on my left side during a seizure . Since then I was seizure free for 4 years then recently I had another one. I was home and my dad was there. I still don’t know the causes of my seizures and I’m going off to college next year which scares me. I’m currently taking Keppra . This medication takes a huge toll on my memory. It’s hard for me to study and memorize information for tests. It’s hard not knowing what causes them and it’s hard not finding out what I feel before having a seizure . I’ve recently realized that for the past 6 years I’ve been blanking out a lot at very random times and my doctor now diagnosed me with partial complex seizures on top of the tonic clonic seizures I’ve had. I hate not being able to drive and the constant worry of having a seizure. People have seen me have it unfortunately when I experienced them st school which made going to school a lot harder for me . I found this page a little bit ago and I’m happy I’m not the only one out there. We all are amazing people with amazing capabilities and intelligent and I hope nobody ever brings you guys down for your medical condition. We all hate it but there’s nothing we can do about it . I hope you all have a blessed day.

Comments

Hi 123abc157,Thanks so much

Submitted by Anonymous on Mon, 2019-08-19 - 13:43

Hi 123abc157,Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd For more information regarding Keppra and side effects,visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects It is great that you’re taking the time to plan in advance. Planning ahead can help to lessen your risks, improve safety, and increase the chance of a successful college experience, both in and out of the classroom. For strategies, tips and resources for transitioning to college, visit: https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college Epilepsy affects each person differently. As you plan for college, develop a personalized plan for managing your seizures and your learning needs. Learn more about managing your epilepsy here: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: 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:Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor and family, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/ One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is 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 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, you may 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/helpline

Hi 123abc157,Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd For more information regarding Keppra and side effects,visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects It is great that you’re taking the time to plan in advance. Planning ahead can help to lessen your risks, improve safety, and increase the chance of a successful college experience, both in and out of the classroom. For strategies, tips and resources for transitioning to college, visit:  https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college Epilepsy affects each person differently. As you plan for college, develop a personalized plan for managing your seizures and your learning needs. Learn more about managing your epilepsy here: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:  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:Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor and family, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/  One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns  It is 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   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, you may 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/helpline   

Hi 123abc157,Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd For more information regarding Keppra and side effects,visit: https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects It is great that you’re taking the time to plan in advance. Planning ahead can help to lessen your risks, improve safety, and increase the chance of a successful college experience, both in and out of the classroom. For strategies, tips and resources for transitioning to college, visit: https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college Epilepsy affects each person differently. As you plan for college, develop a personalized plan for managing your seizures and your learning needs. Learn more about managing your epilepsy here: https://www.epilepsy.com/learn/managing-your-epilepsy Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: 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:Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Review our seizure alert device fact sheet with your doctor and family, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/ One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is 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 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, you may 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/helpline

Hi Camille i am from M'sia

Submitted by Rick Chuah on Sat, 2019-08-31 - 01:27

Hi Camille i am from M'sia and my full sympathy to you too as my son age 20 also share similar feelings of depression & frustration on why this shud happen to him and not having a normal life like others.