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Recently diagnosed and scared

Mon, 02/04/2013 - 02:55
Hi, my name is Helen. About a year ago, I began collapsing randomly. After several tests and multiple diagnoses, my EEG tested positive for epilepsy. My seizures are specifically triggered by stress, and I also have physical triggers such as strobe lights and rapid/irregular heartbeat. Over the past year, my episodes have significantly affected my life. I can strongly say I'm worried about what the future may hold. I'm only 17 years old, and I'm scared. I do not know anyone personally that has my diagnosis, hence my reaching out to this website. I've recently been having memory loss and severe headaches. I am on 200 MG of Lamotrigine a day. Any advice/support is welcomed and appreciated. Best wishes xx

Comments

Re: Recently diagnosed and scared

Submitted by ashleyelaine415 on Mon, 2013-02-04 - 10:56
Hi! I just want to say your not alone. I was diagnosed this past Monday, and I'm only 19 so I can greatly relate to how you feel about your life. I don't know much at this time, but I'm just letting you know I'm here to talk :) I try to talk to people about epilepsy who don't have it and they just don't understand...but I do :) so feel free to email me or whatever! Oh and the memory loss, I'm having the same thing, my time judgement is off too. Hugs!! XoXo Ashley.

Re: Recently diagnosed and scared

Submitted by helenrachelb on Mon, 2013-02-04 - 19:37
Ah! You have no idea how refreshing it is to hear from someone around my age who has epilepsy. My friends are wonderful, but no one fully understands epilepsy and how it affects you. It really is scary, but I'm glad I've found a place where I can connect with people who are going through the same thing. If you ever need to talk as well, I'm always open ears! Best wishes xxx

Re: Recently diagnosed and scared

Submitted by Chloelouise98 on Sun, 2013-04-07 - 19:47
Im 15 and also have JME. I have been suffering from myoclonic jerks from a very young age ( as long as i and my family can remember). We never thought anything of this until i had my first grand mal seizure after drinking at a house party and getting hardly any sleep. I mistaken what i now know as an aura, for a hangover. My seizure resulted in multiple injuries including severe concussion leaving me in hospital for a week. I was referred to a specialist due to my "twitch" which i now know is a myoclonic jerk, the EEG results showed that i was epileptic. I found it very hard to deal with this and got into a deep state of depression. This caused my "friends" to all abandon me and start to laugh at me for my myoclonic jerk, absence seizures and often leave me out. As my seizure triggers are alcohol and a lack of sleep i am unable to socialize with them generally anymore without being called boring. This made my depression worse. Im finding it really hard at the minute but it has cheered me up reading all of your comments. Im glad that my situation isnt applicable to everybody our age and that other people are able to get on with their lives as normal and have such supportive friends and families. You are all such inspirational people and i hope that your health continues to improve. Best of luck. Chloe x x x

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