Hi everyone! Long time reader, first time poster. I am at my wits end with my epi journey at the moment and wanted to vent to see if anyone else has had a similar experience.
For context, I’m 26F, diagnosed with epilepsy back in August ‘25. I’ve had TCs once or twice a year since I was 14, was briefly assumed to have PNES after a TC in ‘24, and after a TC cluster in ‘25 I began the full neuro journey with meds (good old Keppra). I began the diagnostic process in a rural city with not many neuro resources around. I recently transferred to the only level 4 epilepsy center in the state, and I had high hopes but have been disappointed thus far.
After waiting 4 months, I had an initial consultation in January, where we spent an hour going over my health history, details of seizures, witness statements, medication progress, etc. It was a positive experience, and I finally felt like someone knowledgeable was taking the reins. Before that appointment, it had mostly been me “lawyering up” for appointments, bringing copious notes and questions in the hope of gaining some answers. At this consultation, I was relieved to know that someone was close to being on the same page as me.
Being a teaching hospital, I knew that I’d likely become a specimen since my case is confusing, so I wasn’t surprised by the amount of testing and referrals that were made for me. I didn’t complete every single referral or test, as I live over an hour away from the hospital and hate asking family for rides, but I did follow through with a full cardiology work up (to rule out convulsive syncope or cardiac involvement) and pursued an EMU stay.
It’s been several months of testing and I haven’t learned anything new about my diagnosis or current health status. I’ve read through MyChart documents on my own, but I haven’t had a single real conversation with any provider about any of the tests I’ve done. I’m almost $10,000 in medical debt and have zero clue what any of these specialists think apart from what I can gather from their uploaded documents. I’ve been told I’d receive calls with results, but never hear back. I send MyChart messages and never receive replies. I’ve only had one follow up since my consultation, and it was a 30-minute meeting with an assistant who hadn’t bothered to read through my health history. She didn’t even know I’ve been having TCs for over a decade. I’ve also been having (what I believe are) focal aware seizures more frequently since returning home from the EMU, and instead of helping me understand if I should be intervening before these potentially generalize, she spent half the appointment lecturing me on how benzodiazepines are bad for….everything, including anxiety (? weird take, but okay). I still don’t know what I’m supposed to be doing for focal awares. Mine are very minor, but I know they’re damaging to a degree and bring a lot of risk if they generalize.
I’ve seen a lot of stories on this sub about having bad doctors and that it takes time to find someone to believe your story, but I seem to be having a different struggle. They believe my history despite EEGs always coming back clean, but I can’t seem to get a decent conversation out of anyone. I’ve been a good sport and done the testing they wanted, I’ve supplied all of the clinical notes and MRIs I possess, and I don’t hear a peep back about any of it. Should I have to be fighting this hard for basic communication?
I’m just curious if this is a common experience. My insurance provider is potentially going to be out of network with this hospital system in 2 months if they can’t strike a deal, so I’m grappling with the decision of starting early elsewhere or keeping faith and sticking around to see what happens. I was hoping this place would be my long-term care facility, but now I just don’t know. I also worry that I’d go through the trouble of transferring to another hospital in another state and encountering more of the same disjointed care.
There’s more red flags that I didn’t include because this is lengthy, but if you stuck around to read this and have any experience with something similar, I’d love to chat with you one-on-one.
Hope everyone has a great day! 💜