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My life story

Tue, 07/09/2019 - 22:59
My name is Ariel. I am 29 years old. I have had epilepsy since I was about 2. I had a 3 and a half hour grand mal when I was 2 and it caused permanent damage on my left temporal lobe. I then got put on medication and it helped then went off and spent most of my childhood not having or at least not knowing that I was having seizures and then began drinking as a teenager. When I was fifteen I had my first grand mal since I was a baby followed by having 30 and more auras (simple partial seizures) a day. I then began trying every seizure medication there was and then eventually after years of trying every one I had brain surgery. I had the surgery when I was 18 right after I graduated high school. The surgery helped a lot but it still didn’t completely get rid of them. I stopped having the auras everyday and have only had one grand mal since. I take medication still and will get auras a few times a week. Overall I’d say my health is much better I don’t get seizures as often and I used to get migraines consistently and now they are much better. The only issue I have is the memory loss. I have forgotten a lot of my life. I remember bits and pieces but for the most part I can’t remember much of my childhood and teenage years. I have a really hard time working. I want to do something I love doing but every time I try something new it’s just so hard for me to retain the information. I’m trying to start a new job after working at the same boring warehouse one for the last five years and it’s been really hard for me to work for new people. No many have the patience for me and I don’t have much patience with myself. Does anyone else have this issue? What do you do to help it?

Comments

Hi Acjohnson. Thanks for

Submitted by Anonymous on Tue, 2019-07-16 - 13:47
Hi Acjohnson. Thanks for posting. It is common for those living with epilepsy to have experience issues with their thinking and memory. Learn more about those issues here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryWe understand this can feel overwhelming. However, 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-formsTracking 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-diarySeizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf For information and resources regarding employment visit: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowhttps://www.epilepsy.com/living-epilepsy/independent-living/employment/reasonable-accommodationshttps://www.ssa.gov/work/ https://askjan.org/ Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options and career resources, here:https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsThe 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. Learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools, for practical & effective strategies to enhance your well-being.Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline, where a trained information specialist can connect you to resources,  provide referrals and additional support. 

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