u/Far_Wrap_7131

lmao I have been dealing with suspected focal seizures for a while now without knowing.. On my attempts to get tested and find some answers my primary doc (the one that told me about partial seizures) has been the only one to take me seriously 💀 an epileptologist also brushed me off since I wasn’t losing awareness during them & a 24hr eeg came out clean/inconclusive as I had no attacks

Had a longer study lined up but it entailed a week off of work, and coupled with how discouraged I felt after the epilepsy doc, as well as learning only 20% of simple partials may get picked up by the eeg- I saw it as a huge waste of time since it seemed like the odds were stacked against me.

I was feeling stupid and decided maybe it was nothing and maybe I’m just some hypochondriac, since that’s how that doc made me feel. After cancelling the study I had a grand mal seizure a month later witnessed by my partner.

now I gotta go for more eegs, already got prescribed keppra, can’t drive for however long, and while I feel slightly vindicated in the worst way possible- I’m hesitant about getting more eegs 🙃

I have a buddy with epilepsy that gets more tonic clonics than anything, and even for him having such a well recognized presentation, it took him over four different standard eegs 1hr/24hrs & TWO 5 day EMU stays, only the last one finally catching a seizure on the 4th day 💀

idk how to still not feel discouraged. considering how it seems to be a hit or miss with those tests. I feel like nothing will show and I will keep having to advocate while being treated like a hypochondriac liar. gr8

reddit.com
u/Far_Wrap_7131 — 23 days ago

were you taken seriously before getting a tonic clonic? for how long did you deal with simple partials before that? do you still deal with the simple partials/auras, or did it progress and only get worse?

any tips on how to be heard? pretty certain I may have been dealing with simple partials for a while now… but only recently did I get a (witnessed) tonic clonic. my first, I believe; it was nocturnal. I do wonder though; that pain and confusion I felt upon waking, I’m quite certain I’ve felt it before.. Waiting to see a neuro in a few days. feeling a little lost rn and afraid to get dismissed, seeing how often it happens here.

reddit.com
u/Far_Wrap_7131 — 24 days ago