Psychogenic Non-epileptic Seizures

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Back in Hospital Again 🏥 🤕

Today, I just went to the doctor 👩‍⚕️ for GI issues, and all of a sudden started having a seizure. I have non-epileptic seizures triggered by anxiety and had a ptsd flashback in the doctor’s office which set of this whole shit 💩 storm. You see - I was abused in the medical setting - physically, verbally, and emotionally. I was gaslit and told I was faking and needed to snap out of it. FYI it’s pretty hard to fake a seizure. Now I’m losing all my body functions again - can’t walk, can’t talk, can’t even pee on my own. I feel so incredibly hopeless and depressed that I’m going through this all over again. Just when I start seeing a glimmer of hope that I’m improving and getting better this happens. I just want to get better more than ever!!! I’m only 23 - young with lots of hopes and dreams and my whole life ahead of me. I don’t want to be stuck in a wheelchair with a catheter needing help doing everything, when I was just started to gain more independence and get my life back. I’m trying to stay strong, but I just really need some words of encouragement and hope from anyone whose experienced something similar. If any of you are out there I could reach out I’d really appreciate it 💞 #FunctionalNeurologicalDisorder #InterstitialCystitis #Gastroparesis #PsychogenicNonepilepticSeizures #PTSD #medicalabuse

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Seizures

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

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Flare up

The past couple weeks I’ve been recalling my mom’s passing. Starting on April 20th of this year up to today I have been processing the traumatic circumstances.
She was in the hospital and I couldn’t go see her because of COVID-19 , her treatment in the hospital is what caused her death, seeing her slowly pass away when providing the hospice care at home, and her not being around any longer has been a lot .
I started having panic attacks as the anniversaries approached and on the anniversary day(not date) of when all hell broke loose in the hospital I had a psychogenic seizure. I have been off work since then per my doctor’s instructions.
Has anyone else had a psychogenic seizure?
#PanicAttacks #PsychogenicNonepilepticSeizures

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Grieving my old self 😢

Today I got yet another IV infusion - one of many. I have had to use a wheelchair 🦽 and walker to get around, and it’s been so hard!!! I’m only 22. I’ve just been feeling really depressed and grieving my older self (before I got sick) 😷 I used to be a very active person. I used to have a job, went to school, and ran cross country and track 🏃‍♀️. Did I still struggle - yes, but I recently had to quit my job, and my parents told me today that I have to move out of my apartment and come back home :( I’m just in so much pain and don’t know what to do that I’m feeling suicidal again 😭 I need some hope and a light at the end of the tunnel! I just want to be better more than anything! #LymeDisease #Wheelchair #Disability #Depression #SuicidalThoughts #PsychogenicNonepilepticSeizures #PsychogenicMovementDisorder #IfYouFeelHopeless

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Having FND is horrible.

Everyday is pain and even worse than that is that the people around me seem to not even notice or get mad at me for “messing up their plans”. However, no one ever considers how I feel, as the person going through it. For the last 5 years I have felt like a shell of a person and a burden. It hurts when you can’t remember your own name or anything, but the person you remember yells at you and makes you feel worse. You know, as of it wasn’t hard enough to not know who you are or where you are. I want to be a survivor and not a victim, but everytime I get better, I just start experiencing new symptoms. I have dealt with, leg weakness, ataxia, hand locking, tics, seizures, and now amnesia….yet there’s nothing my neurologist can do for me. I feel so powerless…I feel like no one cares about me and all I do is suffer. I don’t usually just rant like this, so I apologize I just need to get this off my chest, so I can cope in a healthy way. Thanks for listening! #FunctionalNeurologicalDisorder #Depression #PsychogenicNonepilepticSeizures #tics #Anxiety #RareDisease #MightyTogether

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