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Does anyone know what this could be?

Hi. I am very desperate for answers and wanting to if anyone could have any ideas.

I am a young lady who has been pretty healthy her whole life. I was diagnosed with #ChiariMalformation my freshman year of high school after 2 really bad concussions. Went to neurosurgeon and was told it’s not past the point where i would need decompression surgery. Fast forward to now…3 years later…I’ve gone from healthy to just trying to stay alive. In july I was at summer camp when I had a seizure (according to the nurse on camp) i then had another 2 days later. I felt completely horrible and can’t describe it other then getting hit by a car. They chalked it up to high altitude and not being acclimated. I came home and went to another camp and had another one. They said this one was a result of heat stroke. 3 weeks later…I had another one. They didn’t have a excuse this time. I didn’t regain counciousness for 5 min after i stopped convulsing. I’ve had multiple EEGs in the past due to fainting excessively but nothing abnormal has come up. The neurologist thinks it’s #nonepilepticseizures . I still don’t feel 100% and am struggiling mentally, trying not to drop at any second and wondering when i will,and physically, feeling like i was hit by a car. Does anyone have any ideas?

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In the hospital for an Epilepsy Study...turns out they are non- epileptic. So my doctor comes in and tells me the massive convulsive Seizures- are non- seizures. It was so invalidating, to hear her tell me it's all in my head to read that because it's non epileptic they just lable everything as abnormalities with normal brainwaves... then send you to psych like you are not physically presenting with something they clearly don't have the tools to detect or measure or even analyze. No Research has gone into this- I'm just left here wondering if they are going to keep inducing seizures never knowing when this study will end, and if I'm even being taken seriously because they trulyknow nothing. Nothing except its not the thing they know about. Epilepsy. So, oh well thats it. Hook you up to wires and call it a day, clearly nothing else must be going on if a person convulsive, contorting, spasming and restless in their own skin- their own brain if its not Epilepsy. Based on how they are speaking to me- I feel not. Like is that the only brain condition that can exist- well they decided it is- because their eeg can't figure it out. #inhospital #Epilepsy #presenting #nonepilepticseizures #PsychogenicNonepilepticSeizures #BrainInjury #MedicalPtsd #PTSD #CPTSD #Trauma


The struggle is real

So I’m tryna get a service dog. I need mobility assistance, heart rate alert, seizure response and some other stuff. I can’t get an epilepsy dog because my seizures aren’t “epileptic seizures”. Just seizures. So I can’t get a dog to help with that, which is annoying. There’s also no way I’d ever be able to afford a freaking service dog because I’m disabled and can’t get a job. So yeah, fml. #nonepilepticseizures #LivingWithPOTS #ServiceDog #fml