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helenrachelb

Recently diagnosed and scared

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

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

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

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

Re: Recently diagnosed and scared

I know exactly how you feel. I had my 1st seizure about 3 years ago. I had a bunch of tests which turned up nothing. The neurologist said it may have just been a one time thing. Then it happened again. So then they put me on 1000mg of Keppra 2 times a day and I couldn't drive for 6 months, which is hard when you have 2 kids and a house to run. The 6 months went by...no seizures...I thought GREAT!!! I followed up with the doctor, he said it would be best to stay on the meds for life and I could start driving again so I thought I could put it all in the past. But 2 years went by and it happened again, while I was on the phone, in my kitchen. I whacked my head on the counter and woke up to a house full of people. A couple hours later, it happened again. So I went back to the neurologist. He said I probably just needed an increase in my meds. Which brings me to last week. I was hugging my 11 year old son and a smelled something funny and suddenly got dizzy and sat down and once again, this time in front of my son and my 10 year old daughter it happened again. Needless to say, it was traumatizing to my kids to watch. They had never seen it happen before. Now the doctor had added Topamox 2 times a day. I have gone thru so many emotions over the last couple of years. The best you can do is to keep your head up and hope for the best. Things have a way of working themselves out. Let everyone know how you feel. Don't keep it in. I am usually the strong one in my entire family but I found that this time I have to let everyone be there for me for once.

Re: Recently diagnosed and scared

My goodness, I feel for you and your experiences. That must have been hard to have your kids witness you at your weakest point. But now when they see you, I'm sure they look at you as the strongest woman in the world. I may be new to the whole "epilepsy community," but I've always been optimistic. To your kids, I'm sure you're a hero. I understand where you're coming from when you discuss your emotions, I have been all over the place this past year. It has affected many if not all aspects of my life. But I've learned that you can't "deal" with epilepsy, you simply have to "grow" with it.

If you ever need to talk, I'm always here. Thank you for your advice and kind words.

Re: Recently diagnosed and scared

My 15 year old daughter was diagnosed with JME in November 2012 after having only 1 tonic-clonic seizure.  We thought this was crazy, but come to find out - she had been having the myoclonic jerks and absence seizures for about 6-8 months prior to that.  We live in a very small community, and word spreads fast, but people cared about her, and were concerned.  The more people asked, the more stories we heard about others who had epilepsy, and/or had had seizures in the past.  We had never ever discussed seizures with anybody, knew anyone who had one, or was epileptic.......since that time, we haven't stopped hearing from people, and they want to hear from us.  Please, do not feel like you are alone.  Though you may have different triggers, symptoms, and medication, you are experiencing the same emotions, fears, and frustrations that others are also experiencing.  I have spent hours researching, reading, and looking for answers and "fixes", only to finally accept that WE can only take one day at a time with my daughter. 

I encourage you to reach out to someone - a school counselor, friend, family member, church, online, or even your local clinic or health department.  There are lots of resources available to us, that we don't really know about. Take it one day at a time - and remember that we're in the boat with you.  :)