juvenile myoclonic epilepsy

Join the Conversation on
juvenile myoclonic epilepsy
78 people
0 stories
6 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in juvenile myoclonic epilepsy
    Community Voices

    Epilepsy Warrior Poem

    <p><a href="https://themighty.com/topic/epilepsy/?label=Epilepsy" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7c00553f33fe992254" data-name="Epilepsy" title="Epilepsy" target="_blank">Epilepsy</a> Warrior Poem</p>
    2 people are talking about this
    Community Voices

    First time posting

    Epilepsy you are so cruel, you keep me away from many things, but I gave you a fight.. when I thought my life were worthless my destiny showed me that I was able to keep going.. I became a nurse to help others but how I help myself? For the world I am one of a kind, people wonder how I made it through English school, then college and nursing school... but for me it wasn’t the heaven, I was fighting everyday, and my only purpose were to showed that I was able to do anything.,, now that school is done and I finally got a job, I don’t feel happy.. seizures are coming back, just little ones, but I’m afraid that I am going to be punished for being greedy.
    I don’t know the first nurse or doctor with epilepsy, my job is hard and stressful.,, how I will deal with it ? How I will deal with my kids and husband? And how I will deal with graduate school ? I don’t know,.... the only thing I’m sure is that I’m becoming a zombie lifelessness, without emotions and temperamental... #Epilepsy #JuvenileMyoclonicEpilepsy #EpilepsyFoundation #Nurses

    1 person is talking about this
    Community Voices

    I have what not a lot of people have. It’s called Juvenile Absent Epilepsy. Common in children; sort of like day dreaming or zoning out. In adults, it’s less common or rare. I’m a twin, my twin sister has #JuvenileMyoclonicEpilepsy and when she knows she has her, everyone else can. She has convulsions (grand mal) and I have what are called “absent” seizures. They happen in the brain but not the body. So I don’t get convulsions. But I never know when I have my seizures. I’m never going to be able to drive. I’m 22, been behind the wheel once. It sucks, honestly. I’ve been suicidal on some medicines, on some medicines I’ve lost my memory. It’s the worst. Somedays I wish I never would have found out. But I did and now I have to live with it. My partner has gotten me through it, she’s absolutely amazing but we had a really rough patch when I first found out. I was so ANGRY. Livid. I hated myself and the world. I hated my life. I wanted it to end. But now I’m on an antidepressant, new medication. Hoping this will work for me.

    3 people are talking about this
    Community Voices

    Myoclonic seizures #Epilepsy

    Hello... I just started to have myoclonic seizures in my torso, arms, hands and stomach. They are quite like jerks like I have read about. They are more like twitches short and repetitive (120/hour or 50 an hour). It feels like when you first fall asleep and your leg twitches. So question is ... has anyone experienced something like this? #ChronicIllness #Epilepsy #JuvenileMyoclonicEpilepsy #InvisibleIllnesses #InvisibleDisability

    8 people are talking about this
    Community Voices

    My story part 1

    I have suffered with #Epilepsy since I was 5 years old, but was constantly told I just need more sleep till my sister did her first aid course and had me go see my gp asking for a referral - turned out she was right. I was 13. No medicines worked. We tried countless drugs from the age of 13 onwards but it only carried on getting worse. #JuvenileMyoclonicEpilepsy also #Photosensitive -epilepsy. Then while in college I started getting a crazy #Migraine and eventually regardless of whatever I took nothing would make it go away. So I slept at home for nearly a month. Once it became better and I tried getting out of bed... BAM! Paralysed. I was rushed to hospital and after doing three wrong #LumbarPunctures they found nothing. The worlds best nerve specialist also told me I was lying. -that day, those words... that lady, I will never forget. Going back alittle - I was in hospital for over three months with this now... at the time for some reason I didn’t think anything of it and just got oncwith whatever. Towards the end, with no help from the doctors there, my dad helped me learn to walk again using their frames and crutches when he would come visit. They sent me home with the diagnosis of #Paraparesis and #Parasesis

    6 people are talking about this

    Advice to My Teen Self With Juvenile Myoclonic Epilepsy

    You are probably pretty overwhelmed right now. Not only are you 15, trying to figure out who you are and what you want to be, but epilepsy just got thrown in the mix too. For a few years life is going to be about doctor’s visits, medications and the rules you have to follow. It’s going to be pretty scary for a while; I’m not going to lie. There will be mornings you just lay in the bathroom and cry because you’re so afraid, and honestly you couldn’t move anyways because your arms and torso are jerking so hard you’d fall over. You will only have two seizures, but you will have jerks every day until they finally get your medication figured out. Your life has become so focused on your epilepsy that you’ve forgotten who you are without it. So you continue living as though fear rules. You don’t get your license, even though you were cleared because you’re scared you’ll hurt someone. You don’t go to college because you’re scared you won’t be able to pay attention. You don’t talk to boys because you’re afraid they won’t talk to you after they find out you have epilepsy. At 22 you finally decide epilepsy isn’t going to make all the decisions for you anymore. You get your license. You talk to boys. You still don’t go to college, but not because you’re afraid, because you have a great job and you don’t need to. You have wonderful friends, you have travelled quite a bit and you bought your own car (freedom). The medication that controls your jerks, however, has a lot of side effects: exhaustion, difficulty with concentration/finding words and memory problems. And every year those side effects seem to affect you more. You go through times where you are doing better and you get up early for work and go out late with friends and have no problems. The next month something changes and you take a three- hour nap every day after work and then go to bed at 9. You can’t remember names, you forget what your boss just told you and you can’t remember your childhood at all. You struggle with this, but you’ve learned how to deal with it. You’re learning that memories aren’t the important thing, the day you’re living is. You’ve learned the importance of to-do lists and Post-It notes. You’ve come to appreciate a nap like you never did as a child. You see, you have to take the bad and figure out ways to make it work. You’re going to have epilepsy for the rest of your life, so don’t give up; keep figuring out ways to make it work. Keep taking naps, appreciate today, make lists, do what you need to do, but don’t give up. You’ve got this. The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.