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The Big "E"
Sun, 07/28/2019 - 18:50Topic: Share Your Story
I had my first seizure before the age of one. I had 2 more grand mal seizures by the age of 5 and no one knew why. I don't know if any of you have ever heard of LeBonheur Children's hospital, in Memphis, TN, but I was there quite a bit as a child. My memories of childhood seizures are having chewable Tegratol that tasted horrible, and having double vision all the time. As I grew older, there was no visible evidence of seizure activity and eventually I was taken off the meds. But, as long as I can remember, I've had these sensations of what I now know is described as "impending doom." I never could put the feeling into words, and so my parents thought they were anxiety attacks. These episodes continued through grade school, high school and into college. Around the year 2000, I had my first grand mal seizure since childhood. And, come to find out, what we thought were anxiety attacks, were actually petit mal seizures. So, fast forward to 2005. I was fortunate enough to have the opportunity to be a patient at the Mayo Clinic in Jacksonville, FL. I had a right temporal lobectomy that was not successful. I am 40 y/o now. It seems that as I've gotten older, the more intense the seizures have become. Mine are definitely brought on by stress. Over the last year or so, I've started having terrible flashbacks following clusters of seizures. The memory only lasts seconds, never long enough for me to tell you where I was or what I was doing. Sometimes, I can sit in my own house and logically know it's mine but nothing appears the same.
I get so angry and frustrated, because I feel like nobody around me understands. In an attempt to stay in denial about my epilepsy, I push myself and eventually crash. My body definitely lets me know when enough is enough. I would appreciate any feedback you may have. Some days I let my epilepsy rule me and other times I overcome.
Hi beth_teacher, Thanks so
Submitted by Anonymous on Mon, 2019-07-29 - 09:20
Hi beth_teacher, Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures 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, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsYou 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.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, 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, triggers, moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Have a seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf 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