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ilbrop

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Hi everybody,

New here. Epileptic for 55 years. Started @ age 7 from tbi, 2 grand mals. 20+ years of phenobaribital. Have had countless events that were labelled as petit mal which i've learned recently are likely focal awareness seizures. I no longer take medication. Have learned to spot the signs, confusion, tunnel vision and interrupt the sequence with awareness.

Always remembered my first few eeg's were with pins that they pierced the scalp with, then they switched to a glue that smelled like nail polish and stuck in my hair for months then to a white glop which was the last i remember.

Typical situation going into a store looking for a product, every episode starts with confusion and progresses to tunnel vision. It's always the same situation, same triggers. Other instances would be if trying to play any sport, baseball, volleyball, etc. Heavy exertion with certain lighting conditions.

I've not seen a neurologist for 30+ years as i've learned to live with the condition and when i did the medication was of no help for this condition. any time i said something they simply increased the dosage. i learned to keep quiet. perhaps things are different these days.

I've learned mindfulness many years ago, practice diaphragm breathing and eat a whole food plant based diet.
 
Epilepsy held me back in life for sure. Back when i was diagnosed it was something to hide, maybe even shame and not discussed unless necessary, much prejudice. I still lived and had to dance to the beat of my own drum. Often not explaining to people why I wouldn't do things other people would because of the potential for seizures. But i got on with life, learned to adjust, learned to develop a tough skin and not care about people's criticism's and judgements. I haven't lived an easy or sheltered life and took many risks because i could see the risk of not engaging in life. Most of my life has been lived solo because people can't understand and I don't have the energy to try. Sounds morbid but i've lived a mostly happy life not dealing with attachments other people got themselves into. Learned to live with what i can get without struggling for the gold rings.
 
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