TLE Word Other Than Seizure? | MyEpilepsyTeam

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TLE Word Other Than Seizure?
A MyEpilepsyTeam Member asked a question đź’­

TLE how, what do you say to people witnessing to do or wondering after or during a seizure? I get a lot of yeah right. Sure you did, I was sitting right here, you didn't have a seizure, you nut job 🤬
Thinking if I could use a different word, never The best time to get into a discussion, preconceived notions of what a seizure is and isn't

posted February 28, 2022
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A MyEpilepsyTeam Member

I have seizures at work and if i tell anyone they’re usually like “you seemed fine to me” like stfu geez…. Or sometimes i say weird things but they don’t pay attention or realize. They don’t understand epilepsy, apparently if i’m not flopping around on the floor i’m fine…

posted February 28, 2022
A MyEpilepsyTeam Member

I too am annoyed by this, I am personally tired of defending myself. I was actually fired from a job that thought I was drinking to impaired speech. I was not of course however the seizure had me to confused to argue.

posted February 28, 2022
A MyEpilepsyTeam Member

Tinkeredmythinker, its great to meat you. I also have t.l.e however my episodes are very obvious. I black out, walk around or just sit there. I go out then (if my mom witnessed it) I write them down. I have episodes about every 10-15 days. Keein touch.

posted February 28, 2022
A MyEpilepsyTeam Member

In my house we refer to my episodes as "off days" my personality shifts and the disconnect is obvious. I run into walls, the bruising is embarrassing. I hate going to doctors to have Adult Protective Services insist I am abused, which may not be untrue but certainly is with any physical abuse. I have not been beaten during my marriage. I cover almost all of my skin and find I have to explain bruises far more than the seizures. I also made everyone around me get trained in epilepsy first aid, it keeps me from unnecessary trips to ER. And personally I get violent, ripping out catheters etc. nothing worse than being restrained with no memory. I choose confusion at home surrounded by pictures that can hold on to what memories I do have. Genetic testing is a must for me.

posted March 1, 2022
A MyEpilepsyTeam Member

Genetic testing from reading I learned can tell the kits free to doctors but thousands to get them. Ridiculous!

posted March 1, 2022

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