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Just Diagnosed at 18
Mon, 05/27/2019 - 02:36Topic: Teens Speak Up!
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 - 10:45
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
Hi Emma,Thanks so much for
Submitted by Anonymous on Tue, 2019-05-28 - 09:23
Hi Emma,Thanks so much for posting. It’s important that you continue to express your concerns to your neurologist and discuss any changes in side effects, behaviors, symptoms, or seizure types. For more information regarding seizure medications please visit, https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/importance-taking-medication & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/drug-interactions You may want to consider with your doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers.It is 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 It is common for those living with epilepsy to experience feelings of depression https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression , anxiety, https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-advanced/anxiety-disorders & cognitive problems that may affect attention & memory, https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd . Learn more about challenges with epilepsy, https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior , https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/medications-and-mood and additional information on managing your epilepsy, https://www.epilepsy.com/learn/managing-your-epilepsy For additional questions, or help navigating local, or national resources please contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, epilepsy.com/helpline ,where a trained information specialist can assist in connecting you to resources, provide referrals and additional support.
Hello EmmaMaybe talk to
Submitted by Allisonrunnergirl_5a3c6155d8ea8 on Tue, 2020-04-21 - 23:31
Hello EmmaMaybe talk to someone who may know a thing or two (your parents maybe) I had my first tonic clonic at 10 and stated meds. Then my parents told me I had a brain injury at birth causing me to have epilepsy for my entire life. I had small seziures but they stooped when I was about 1.5-2 years old. Your parents or someone else may have some infromation that could help. My case is rare nobody gets epilepsy the same way as I do anymore the doctors implanted a law to make sure of that, but you are older than me. It came out of the blue and many years later I am still on medication. Talking to someone is the best thing you can do right now. Scans may say you are okay but the doctors can not get inside your head and tell you what or how to feel phisically. If you say you are not ok and something is wrong then you are not ok and something is wrong. Dont beat yourself up about it things will change with time and they will get better. I do not know anything of ADHD but the seziures will get better Best of Luck to you
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.