seizure disorders

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I have lived with seizures going on 4 years now. It took me almost 6 months to get diagnosed because my parents didn't believe what was going on (even though they heard the thrashing in bed at night and saw my bruises and how tired I was and how much pain I was in)
I am now 18 almost 19 and am in foster care. The hing is, I wasn't diagnosed with epilepsy. I was diagnosed with Psychogenic non Epileptic Seizures. Not a lot is known about my condition, although new research suggests that a lack of gray matter in the brain could be the cause. Its so frusterating because medical professionals don't always see my seizures as being real. For example 911 has been called many times when I've unfortunately had a seizure in public and when told it's not epilepsy they immediately start yelling at me to stop faking it.

Let me say I've been told by 5 different neurologists that there is no way I am faking this. They also told my mom that when she asked.

Unfortunately because of the severity of my symptoms I was laid off of my last job and am struggling to find employment that will work with me.

I just wish there were people out there who understood and that would work with me.

Any suggestions?

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This is not what I wanted...

I have to laugh... I’ve spent years of my life wishing I were skinnier. It was so unhealthy how long I stood in front of the mirrors, scanned the room for girls that were smaller than me. I always had an unhealthy relationship with food; I used it as a reward and withheld it as punishment. I counted calories religiously.

Three weeks of no food can really knock that attitude right out of you. I’d rather be chunky with energy than be skinny, malnourished, cranky and tired. #ChronicFatigue #BodyDysmorphicDisorder #SeizureDisorders


It's almost midnight and I can't sleep. I'm scared because I will meet a friend tomorrow I haven't met often yet. I don't know how communication will work out, since I am experiencing hearing loss and don't feel comfortable speaking around anyone else than my boyfriend.
That friend I'm going to meet doesn't know any sign language, has difficulties writing and texting, since his hands aren't good for small movements, and I am not the best lip reader.
I am scared it might be too stressful and exhausting, I might get a seizure, and he didn't see one live before. I don't want to scare him.
I don't know if I'll be able to eat or drink outside my home.
Next week I will have appointments with my neurologist/ psychiatrist and my ENT-doc. I'm nervous, I hope I get my medication refill as needed, and I hope for a hearing-aid-prescription. As soon as I don't hear properly, I get nervous and can't voice anymore. I really hope, with a hearing aid I might be able to talk again. #HearingLoss #Anxiety #SeizureDisorders


I'm having a bad day. Finally. The kind of "I wanna curl up and cry and say I have needs!" day. And tend to them, comfort myself, tend to them, so I finished my tasks and went home, and wanted to post that I'm having a bad day. This feels good, as if triumphant, an accomplishment in my life AND this world to just say "I'm having a bad day and must tend to myself!" It has healing power:) Especially to be grown up about it, Independent about it:) No one around to bother me about it or want to manage me for it (BLEH!) because this is health that I mature and manage. I'm thankful for my real support for God and those REAL ones He placed in my life. ☝He's the protector and comfortor and more, in Christ, who YES also have bad days like everybody else:) Just good to have a voice again. Thanks Mighty. #ComplexPosttraumaticStressDisorder #TraumaticBrainInjury #Seizures #SeizureDisorders #AbuseSurvivors

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first ever seizure

yesterday I had my first seizure it lasted 15 mins but I have no recollection once awoken, I had drank a little but not enough to get most drunk tipsyat the most. next I'm surrounded by people who said they found me shaking,eyes rolling to the back of my head etc seizure sypmtoms, I woke up in confusion with breif major behavioural changes such as aggression. I don't understand as I've never had a seizure before any advice? I've had momentary convulsions before but never full blown seizure. I was extremely tired after and tonight I've been sleeping for 30 minutes and awoken then kept falling back to sleep. #SeizureDisorders #Seizure #Epilepsy #help


I don't know if I can do this. I feel like I am trying as hard as I can.... I feel like a failure. I feel like I can't do simplistic shite. Overloading myself like I used to but it's different now.... my body can't handle normal. I have a disability and while I don't let it define me, I am inhibited by it. It controls more than I can.... Influenced by things like depression and mind numbing exhaustion.... Right now I am falling apart sure I'll get up and try tomorrow.... but right now...I'm falling apart. #depressed #Epilepsy #Seizures #SeizureDisorder #fallingapart #SeizureDisorders #tired


3 Days...

Damn was 3 days seizure free, apparently I started having one almost rolled off the couch boyfriend said I was stiff as a board, can't sleep now..... Well in a few hours going to get another EEG done... Hopefully we can have a proper diagnosis *fingers crossed* wish me luck!

#SeizureDisorder #Seizure #Seizing #Epilepsy #SeizureDisorders #fighting #workinghard

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Oof hey just needed to vent....

~Thanks to seizures I am getting dropped from school again
~Nocturnals got me biting my cheeks and tongue
~Wish me luck I just scheduled my 3rd EEG today.... First 2 never caught anything
~I am constantly having this feeling all day where I think I am going to seize and it won't come forward....

I am not doing well today.... I have a great supporter who reminds me it isn't my fault....

But now I may have to call out of school again.... And I am just not okay.... End rant.
#Seizure #Epilepsy #SeizureDisorder #SeizureDisorders