The Sudden and Life-Altering Impact of Adult-Onset Epilepsy

I wasn't diagnosed as a epileptic until I seized at an all night MDA fundraiser marathon where a fell 4 fleets of bleachers and made contact with the hardwood gymnasium floor. A really nice male English instituter who called the paramedics and later rode to the hospital with me where we met my parents. Since then I've been for the most part seizure free. It's now been well over 14 + years sever popup convulsive attacks.

I was 36 when my seizures started, two years to get them under control. 52 now, seizure free but still living with the affects from it.

I am 42 and I had 2 grand mal seizures last march out of nowhere… the only thing I remember was having a terrible migraine from working in the sun…. Then I woke up in the icu on life support weeks later….. surrounded by nurses and doctors I thought I knew??? I was completely confused but also irritated because they kept saying that it’s normal to have Deja vu as well…. I was never even told I had epilepsy but when I tried to get a work note they told me they weren’t going to let me go back for a year because I drive to and from work and work on the road…. I went through 5 neurologists in 1 year…. EEGs…. Heart echos….. ekgs….. MRIs…. Cat scans….. I hit my head either before or after the seizures so if it was before, it could explain the seizures but if it’s as a result of a seizure then I’m back at square one…. I bit almost mostly through my tongue and was covered from head to toe in bruises…I was prescribed Keppra and I actually haven’t had another seizure since??? It’s been over a year and still I haven’t found a good neurologist that actually gives a crap and wants to help me figure out why and if I’m having other kinds of seizures but unaware…. I’m just very confused and very scared sometimes that I’ll just wake up weeks later in the icu… almost ptsd if that makes any sense….

Thank you for sharing your story. I experienced a head trauma from an accident at age 18. My career was going well, working many late nights. At age 35 while driving home I suffered a grand mal seizure. When I awoke, I was in the hospital, no idea what had happened. I took Dilantin for about 10 years. After having another Grand Mal seizure, was switched to Lamotrigine. While continuing to work I had many of those focal point seizures. 63 now, retired at 62. I have not had any seizure since. Seems being able to relax more has helped a lot.

Thanks for your story. I’m older and they’re discovering seizures are increasing in ppl above 55+. Started with me at 69. I’m a “younger “ type personality I guess but it’s crazy ! I started with the tonic clonic , ending up like with the focal aware like you ; however with diff sx. I’ve had about 30 eeg’s in and out pt which I think are ridiculous bc they’re always normal. Neuro says I don’t need a scan or mri. Even going through focal awares I would lie down on the bathroom floor and lost control of my bladder. I’d lie there for about 30 min then get up slowly and get in the shower and cleaned everything up. I will never go see a movie though. Had a huge seizure which resulted in clusters. They were every 8 minutes. Deadly. Paramedics came. 2 boluses versed given Unconscious until I woke up in ER. So movie theater definitely trigger . I’ve no idea what triggers are other than that. They could be anything. I’ve been on so many meds. Now on Zonisomide 200 am and pm , lamictal 200 am and pm and have an VNS implant. My dx is left temporal lobe - ictal epilepsy. He said probable tbi when young. It’s terrifying. Especially the clusters. Clusters are deadly. I have the emergency spray. But my focal seizures start with my face gets flushed. My ears feel so loud. Then my head starts feeling like it’s going to blow off my head. I don’t smell anything. I just lay down. The VNS is ok I guess. Epilepsy really is awful. Thought I’d share my story. I certainly know when my meds are due every 12 hours. My head and balance let me know. 😢. Good luck. I’ll have to look into your book !

No specialist but an epileptic as well, a possible solution on the causes of epilepsy could be understanding what scenes are the one's he's reliving during his flashbacks!

That was incredible!

Thank you so much 😢

❤

I was in my late 20's when I had my first Tonic-Clonic Seizure at work. I was working hard as a CAD Drafter for an Engineering firm in Chicago. One second, I was working hard, picking up engineers' markups and the next I woke up in a hospital with a mouth full of blood and broken teeth and surrounded by a few of the engineers I was working with...