juvenile myoclonic epilepsy

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Epilepsy Warrior Poem

You come in my life at anytime like a thief committing a crime

You never seem to say a word yet ur actions are always there to disturb

You are invisible but the things you do to me are unforgettable

You make me forget who I am. "Am I Santina or am I Sam?"

You make me ache and make my whole entire world shake

I sit in my hospital bed wondering if there were any tears shed

But I wake up feeling fine finally realizing that my body is now mine

If I pass let there be no sorrow for I am an epilepsy warrior today and tomorrow!💜✝️
#Epilepsy #JuvenileMyoclonicEpilepsy


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

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#Epilepsy #JuvenileAbsentEpilepsy

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.


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


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