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My Story

Now knowing what TLE is and what it can do has put an internal spot light on my past. Growing up I felt like any other regular kid, playing, joking, etc. I never thought that a crossed wiring issue in my head could wreak so much damage. Quick episodes or seizures weren't recognized and specific trigger points where often chalked up to as typical strange kid syndrome. I was a pretty bad student, couldn't concentrate, would often forget what I've just read, the words on a page would start to mix into each other, etc. I'm not excusing or blaming TLE entirely, however I'm sure that it didn't help any. Finally, one day some 12 years later I decided to make an appointment with a neurology group, a few tests, one specialist and a phone call later I was diagnosed with TLE. Learning about the trigger points, how the different seizures can affect someone and what can be done has helped me get a grip on what has been plaguing me.

The feelings of Deja-vu, the tingling on my face and the blank stares. I usually try and explain it to individuals and my family as an internet video buffering while it loads, at least that’s what I feel like. Speech can get locked up, I sometimes have difficulty finding the words I’m trying to use. There have been difficult times, mostly just because of the medication leveling out. I hate taking them, I get tired and exhausted. Luckily I’m on the lower dose of the spectrum. which still doesn’t help the sleeping and weight loss. I’m thankful I at least found out what’s going on and at least when there is an episode I know what it is and how to deal with it. I take every day as it is, some good, some bad, I figure as long as I’m upright and breathing, all is ok. I’m sharing my story in hopes that this helps anyone else, I’m also writing this to keep myself sane, know that you are not alone, help and support is always around.

Comments

Hi Jacouti08, Thank you so

Hi Jacouti08, Thank you so much for sharing your story, it sounds like you’ve been through a lot. It's important to recognize that epilepsy is more than just seizures, your emotional health, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health  and over all well-being is just as important,  https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute... it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at epilepsy.com/localsupport &  www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. Additionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org,  epilepsy.com/helpline  , can assist in connecting you to resources, provide referrals and additional support.

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