The Sudden and Life-Altering Impact of Adult-Onset Epilepsy
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- čas přidán 4. 06. 2024
- This month on Seizing Life® Jon Tuteur shares his journey with adult onset epilepsy. From his first seizure at age thirty, through his epilepsy diagnosis, treatment, and eventual brain surgery, Jon discuses the physical and emotional impacts of seizures, medications, diagnostic tests, and medical procedures in pursuit of controlling his epilepsy. He also tells us about his forthcoming book Seizing Today: Discovering Purpose and Authenticity in a Life Changing Diagnosis.
Jon Tuteur was a busy professional and self-professed “workaholic” in the prime of his life when he suddenly began experiencing seizures. Following several tonic clonic seizures, including two in front of work colleagues, Jon was diagnosed with epilepsy. The initial medication prescribed controlled his tonic clonic seizures, but Jon continued to have focal aware seizures for many years, experiencing over 500 seizures during this time. Jon provides a vivid description of his experience of focal seizures, detailing how they feel from the inside and appear to the outside world. When Jon’s medication began to lose efficacy, his tonic clonic seizures returned, and he started on a path of increasingly invasive tests to determine the origin of his epilepsy. This journey led him to stereo EEG testing and a prolonged hospital stay at Johns Hopkins, ultimately resulting in a decision to undergo laser ablation surgery. Jon details the surgery, the initially alarming results in its immediate aftermath, and the ultimately positive impacts of the procedure.
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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 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.
Epilepsy is not an easy neurological disorder to live with. We appreciate you sharing your experience with us.
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!
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 !
Woooow that sounds like a whirlwind of ups and downs...i'm going through it for over 25 years..same thing with eegs up until.a few months ago. They saw spikes 2 nights in a row during sleep. But, neurologists can't figure out , they write me off after a cpl years, increase,/decrease meds..now, I'm having daily ticks, speech impediments, trembles and i was also thinking about John Hopkins or another great hospital outside of New York.
God bless you and much love, light and wellness to everyone going through this..its a repetitive cycle of the same testing and meditation dosage experiment..i am also thunking about CBD oil..if anyone has any experience with it please share? Thank you
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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...
Thank you for sharing your story with us. Epilepsy is not easy to live with and we continue working hard to find a cure.