What Burdens Do You Carry?

female. My late 30s.
The difficulty of some doctors in ER defending their egos and playing with a patient as if it’s a dog’s chewing toy.



Inaccurate assumptions can get you killed or further damaged. It’s also difficult when you have a rare condition that is the most likely cause of your epilepsy.

Born with optic nerve hypoplasia. It can affect anything from motor skills, hormones, and end up with neurological issues most common epilepsy.

The epilepsy diagnosis was done in 2007 by a neuro ophthalmologist. It was comforting to hear her talk about how many patients with ONH she’s encountered. Even mentioning the situations I should expect. I never forgot those.


They happened in ER last year. Cerebral hypoxia, breakthrough seizures mini stroke. Nerves needed to be re-stimulated in the limbs. New hormonal implant and then finally went to the Epilepsy Center end of August.

Have a very supportive husband. He explained the scariest ER situation. June 2024. Those epileptologists were incredibly competent. Knew what they were talking about.

Need to go back within a year to do an operation. Three times in ER was too much for me. So I figured after a hormonal shift. Let’s see if I’m not as medically resistant or worse. That’s another issue with people who have ONH. The body knows how to argue against medication.

Most people I encountered in Neurology were god-awful. But these two individuals, the person who did my diagnosis in 2007. My current general neurologist. These are gems that are rarely found in medicine. At least that’s been my experience.

Sorry for the book. You all take care.

Epilepsy seizures

My burden has been major side effects from meds, surgery that per my surgeon “was not a cure”, inability to remember many words- simple words- including simple medical field words and I’ve been a nurse for 27 years (could not come up with the word ‘syringe’ several times), short term memory issues, being able to process information being said to me too fast or too detailed. I know these are common in many of the other commenters. One other issue for me is that I was only diagnosed with epilepsy 2 years ago. It’s been an absolute roller coaster journey, and I’m still on it, with an incredible medical/surgical team and thankfully in the 21st century.

Feel awkward about unable to remember peoples names and family memories, I read a lot to stimulate my brain and help it grow so hopefully I can remember better both the past memories and future ones to come...