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Happy or Safe
Mon, 11/18/2019 - 20:52Topic: Share Your Story
I was diagnosed with Tonic Clonic epilepsy at 10 and at 18 had my first status epilepticus episode, it lasted 4 days. I take 200mg's of lamictal-XR 2xDaily. Given my life so far and disability I value quality of life above all things, not material possessions per say, freedom to live how I choose. At 18 I moved in with extended family to escape an abusive parental situation. My epilepsy has no diagnosed triggers, the best correlation the Neurologists could come up with was that it is brought on by family stress. I continued to have what I thought was Tonic Clonic seizures every few months for 7 years. 3 years ago I learned that by drinking alcohol medicinally during extremely stressful events like holidays or encounters with my parents I could avoid seizures. At age 25 I moved away from my extended family after things got too stressful and now live alone despite the risk. They think I'm going to die within a couple months. After hearing a detailed description of the episodes I determined I was actually having Status Epilepticus episodes for the past 7 years, not Tonic Clonic. My family didn't know the difference in severity. As a male adult with Epilepsy I have always struggled with confidence, to be independent and accepted as little help or medication I could live with. Ever since I was 18 when I woke up I wondered if I would have a seizure that day, when I went to bed I wondered if I would ever wake up. That fear will never go away, I really am living life on the edge, however I refuse to let it destroy my life any longer. Living alone has released so much stress, but it has definitely added financial stress. I'm lonely without a support system or family to rely on, but if people pull away when they think you might die I don't think I should have truly relied on them in the first place. I'm working on building a new support system but my new lifestyle doesn't leave a lot of time for this kind of thing. It's frustrating but so far I'm content with what I've wrought. I'd appreciate an outside view?
Hi,Thank so much for sharing
Submitted by Anonymous on Tue, 2019-11-19 - 10:01
Hi,Thank so much for sharing your story, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsOr contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates ,to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other. It’s also important that you’re continuing to follow-up with your healthcare team to express your concerns and if you experience any changes in seizure types/frequency, side effects symptoms, behaviors and moods to determine what individual treatment plan is best for you. If you have not already, you may want to consider seeing an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit:https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist We are glad to hear that you are living in a less stressful environment, but we understand your concerns. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. We know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and help manage your epilepsy. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording your medical history, setting reminders, managing medications, side effects, moods, behaviors & triggers,which can be shared with your healthcare team. 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 Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline