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Just Diagnosed at 18

Mon, 05/27/2019 - 02:36
Heya My name's Emma and I had my first ever seizure (tonic-clonic) last September at TAFE (a type of practical college in Australia). Since then i've had two more tonic clonic seizures and i'm pretty sure i've had quite a few of either the focal onset ones or the absence ones. I have absolutely no prior history of seizures/fainting or anything like that. Although, I have been diagnosed with ADHD since I was 16 and Depression + Anxiety since I was 14. It's all been pretty random and out of the blue and i've found that most young people with epilepsy have been experiencing it since childhood but I'd like to know if there's anyone else that's in the same boat as me. I've had a bunch of MRI's, CT Scans, EEG's and Telemetric Studies but everything keeps coming back totally normal (even though it's clearly not) so it's getting pretty frustrating. I've been on Keppra since last November and i'm pretty sure that's been preventing the Tonic-clonic Seizures cause the only times i've had them has been when the neurologist tried bringing down my dosage in March + last week when I ran out of meds and didn't take them for two days. It's annoying though cause they've lowered the dosage for my ADHD meds cause they don't want it to interfere with my seizure meds but that's made it really hard for me in my everyday life in terms of focus and mood. Hope to hear from some of you x

Comments

Hi Emma! I'm 18 as well, and

Submitted by A.T.Schmitt on Mon, 2019-05-27 - 10:43
Hi Emma! I'm 18 as well, and have been living with it since I was 12/13. And I know what it's like to have no known cause of my seizures. I have tonic clonic seizures as well, but they're relatively under control by Lamictal and Vimpat. It's scary and frustrating, I know, and with no known cause or triggers it can be (at least it was for me) devastating. But the best thing that I found to do, and my advice to you, is to talk about it! Learn everything there is to know about your seizures and shout it from the rooftops. Even if it's just making jokes about your seizures, or bringing it up in passing conversation, taking all those thoughts and voicing them to others can be almost therapeutic. I also advise you to never dwell on it longer than you have to. Be aware, but never dwell. Don't let yourself be Emma who has Epilepsy. Be Emma who is a Lovely Person, Emma who Loves to Live, and who just so happens to have epilepsy. Your seizures are not who you are, please always remember that.

Hi Emma! I'm 18 as well, and

Submitted by A.T.Schmitt on Mon, 2019-05-27 - 10:45
Hi Emma! I'm 18 as well, and have been living with it since I was 12/13. And I know what it's like to have no known cause of my seizures. I have tonic clonic seizures as well, but they're relatively under control by Lamictal and Vimpat. It's scary and frustrating, I know, and with no known cause or triggers it can be (at least it was for me) devastating. But the best thing that I found to do, and my advice to you, is to talk about it! Learn everything there is to know about your seizures and shout it from the rooftops. Even if it's just making jokes about your seizures, or bringing it up in passing conversation, taking all those thoughts and voicing them to others can be almost therapeutic. I also advise you to never dwell on it longer than you have to. Be aware, but never dwell. Don't let yourself be Emma who has Epilepsy. Be Emma who is a Lovely Person, Emma who Loves to Live, and who just so happens to have epilepsy. Your seizures are not who you are, please always remember that.

I can't give you advice on

Submitted by A.T.Schmitt on Mon, 2019-05-27 - 10:45
I can't give you advice on your ADHD, as I have never experienced it, but those are two ways that I've found to manage the stress of having epilepsy itself 

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