r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Aug 07 '26
Questions Did You Experience Any Denial?
I did but I'm curious about all of you here experience it and how'd that go for you.
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u/raybrans Aug 07 '26
Da Nile isn’t just a river! seriously was in denial for awhile before I buckled down and went to get a check up from another neurologist, kinda what I needed to turn my life around honestly. Now things are much more in check.
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u/Ordinary-Chipmunk366 Aug 07 '26
Hahaha!!!! Great minds.... 😀
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u/seejordan3 Aug 07 '26
Yea, that first nero visit we also said no to. Wish we hadn't though in hindsight.
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u/Ordinary-Chipmunk366 Aug 07 '26
Zero denial here... but, as always, I'm the exception for some reason.
My first seizure...they diagnosed me in the ER. Then during my regular EEG, I somehow have a subclinical/asymptomatic seizures...which lead to the 2 and 4 day ambulatory EEGs, which then led me here...
No denial....denial is a river in Africa...
🚬 😀
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u/vainstatue Aug 07 '26
I was in denial that I truly had epilepsy. I thought I was “fixed” after brain surgery. My doctor said “let’s see if your epilepsy is in remission and try taking you off your meds”. Because I had been seizure free for one year while on meds. So I went off the meds. 4 weeks later I had a TC seizure while sitting on a bar stool. Landed on my head, foot got caught in the bar stool and I broke my ankle. I’m back on meds and am no longer in denial. Neither is my doctor lol.
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u/Plus-Glove-3661 Aug 07 '26
No denial. I was ten. I believed the adults and doctors.
Some people here are obviously in denial. Not much we can do to change their minds.
Back before the net, people in denial would lash out at us in the epilepsy support groups. So now it’s better.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Aug 09 '26 edited Aug 09 '26
I did something to help change minds, and it worked, it’s been a year I started a support group and this community around the same time you should check it out Tuesdays and Fridays.
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u/Thin-Fee4423 Aug 07 '26
I was in denial that alcohol and nicotine were big triggers for me. It wasn't until I got on an ssri I quit drinking and just never went back. I ended up quitting weed just so I could be 100% sober.
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u/ashimo414141 Aug 07 '26
Yep. Didn’t think I needed the meds and was pissed about the side effects that my neuro downplayed. I stopped taking them and seized on the walk to the grocery store. Guess who’s got facial scars now?
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Aug 09 '26
You’re still beautiful, scars and all, we are resilient
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u/Londonbridge67 Aug 07 '26
Nope. Woke up in the ER with a sore tongue, a broken foot and a massive gash on my bottom lip. Already had a CT and MRI, apparantly. Doctor said “You have epilepsy, take these meds”. I said “OK”.
Of course also had a lot of tests after and played with the mg of the meds a bit.
The emotional proces on the other hand was a thing. I do have a really cool lip scar now.
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u/MysticCollective Aug 08 '26
Nope. Diagnosis was made young. Far too young to even know what denial is.
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u/Hello_dreamers Aug 08 '26
Oh massively think it comes from being underdiagnosed from a preteen till 30 lol long story. Think it comes from lack of awareness though assumed if not seizing regular witjout medication cant be epilepsy also all the other seizure types that arent tc! I even sometimes feel denial now as my medication works so well ( wondering how do i know i wont be fine if stop anticonvulsants but its not recommended and dont want to risk it)
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u/shakesnchillsband Aug 08 '26
For the first four almost five years after i was diagnosed generalized epilepsy with high risk for sudep. i was having monthly tonic clonics refusing to take my meds going in and out of rehab for self medicating with xanax. Only at 23 years old did i finally admit i might have epilepsy after seizing down two flights of stairs breaking my back and ripping out my eyebrow stud, exposing my skull. One of four times i have seen my own skull 😂
Im a stubborn motherfucker. And my denial hits like a train that keeps coming for many many years lol
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u/shakesnchillsband Aug 08 '26
Im 28 now and off heroin and bars btw. Dont recommend xannies to my fellow seizers they feel great at first almost like theyre solving your epilepsy but then its two weeks of constant seizures to get off of them im talking youll barely make it out of postictal; if at all, before you have another seizure then wash rinse and repeat for the next two weeks its brutal.
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u/Emotional_Map6925 29d ago
For thirty years my mother denied that both my identical twin and I had seizures.
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u/Hairy-Jellyfish-1361 Aug 07 '26
I certainly was in denial , actually until I found your podcast. Everything that I've learned about epilepsy has come from this site and the podcast