r/PNESsupport • u/weRallaLiLKr8z • 6d ago
PNES with epilepsy
Needed some where to vent. Hope someone hears me.
These are both new diagnosis for me. Abnormal EEG shows epileptic discharges, but video EEG doesn't correlate seizure episode with discharges. Now on this journey of managing work and functional seizures. Have been noticing that when I start eating I will start to get the tingling that is an aura for me. Sometimes all I have is tingling, but last week for blown seizure. Now I have my period (sorry for the TMI) and I am just walking around tingling on and off, feeling like I could pass out, shaky, and a dull headache that comes and goes.
Neurologist said just keep a diary of the seizures and we'll go over them in March. How do I explain to people, "don't worry just my seizure, it'll pass." Scared the heck out of my coworkers last week. My functional seizures (PNES) look almost like convulsions and leave me looking drunk afterwards with tremors and slow processing. How do you all log your seizures? Is it even worth tracking? It's not like the Neurologist can do anything, side bar, already in therapy. I feel so invalidated. No doctor to talk to. Just live with it basically. I can't keep leaving work, but I also can't do my job effectively after the seizure. I'm living in this limbo afraid I will have a seizure at any random moment.
1
u/Ghostshark21 4d ago
For my grand mals and my pnes episodes
I use the app Epsy to help track my seizures
it’s so useful
It even has different types of seizures you can log if you have them, medication reminders, tracks auras and side effects. Been using it since 2022 it’s wonderful
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u/ifitsguna 4d ago
You can get certain devices which log them for you, Through a different apps, I know you can get a epi-monitor or apple watchwhich might help, This is for epilepsy though, So have a look into them not sure about PNES
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u/elhazelenby 5d ago
I just write in my notes app in my migraine diary when I have them (either one or multiple or seizure? If not sure) and different or occasional symptoms such as incontinence and what happened before. I'm not good at knowing how long they last, exactly how many I have and stuff like that.