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

[@marcelleschlebusch1670]

I turned 50 on the day of my 1st seizure. Broke my right shoulder in 3 places etc. 2nd seizure December 2023. 2 years apart. Still no cause was identified. Had ct scan, MRI, EEG blood work. I have lost the ability to urinate now. Has neuromodulator now. Treasure your health. It can change forever in seconds.

[@CUREepilepsy]

Hearing stories like yours strengthens our resolve to fund breakthrough research to find a cure. Thank you for taking the time to share your experience with us.

[@noelburland7169]

I'm 40 years old, from New Zealand and grew up with my father (still alive) who developed post-traumatic epilepsy after falling while running down a sand dune hill and hitting his head on a small rock on the left side just in front of the ear. This injury occured in 1980, four years before I was born, and caused him to have to re-learn all the basic things we take for granted. Despite being on medication he has had some bad seizures post head injury, one of which in 2005 led to him banging his head on the toilet bowl and suffering a second major head injury, which ended his ability to work. Despite this he maintains a great outlook on life even though he lives with a lot of pain, particularly on the right side of his body. Then two days ago, my wife who's nearing turning 39, suffered a major seizure 15 minutes after returning to bed from using the toilet. She never has had a seizure before and according to her family did fall over and bang her head face first as a three year old. Despite living with an epileptic father I had never actually witnessed a full on seizure so it was very traumatic seeing it happen to my wife. She violently shook and her eyes went up in her head in slightly different directions. She clamped down on the right side of her tongue, causing it to bleed. After she regained consciousness I took her to the Emergency ward of our local Hospital (she got herself dressed and even did her makeup) and they ran bloods, did a CT Scan and checked her urine, not finding anything initially. While discussing whether to keep her there or send her home, she had a second seizure and fractured and dislocated her right shoulder in the process. Her mother was with me at the time and we both witnessed the second seizure. My wife had to have surgery to relocate the shoulder and she will now be classed as an epileptic and be on medication for the rest of her life.

[@CUREepilepsy]

Thank you so much for sharing your father and wife's stories. With 1 in every 26 Americans developing epilepsy at some point in their lived, it's absolutely critical that we continue researching to understand the causes and find cures. We are keeping you and your family in our thoughts as your wife heals and embarks on her journey with epilepsy.

[@noelburland7169]

@CUREepilepsy thank you for your reply, very much appreciated. Luckily I have experience growing up with a father who has epilepsy so I won't be a fish out of water dealing with my wife's unexpected new journey, but it will still be a challenge for both of us and our families, especially with the shoulder injury. At this stage they have no clue what triggered her seizures and which part of the brain was responsible. Unfortunately it seems that in a high percentage of seizures, the root cause remains unknown.

[@Greeneyesengage]

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….

[@portersmith1876]

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.

[@richardcyc9069]

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.

[@CUREepilepsy]

Epilepsy is not an easy neurological disorder to live with. We appreciate you sharing your experience with us.

[@openmindedwonderer]

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.

[@CUREepilepsy]

Thank you for sharing your story, and congratulations on seizure freedom. Epilepsy is not easy to live with and we are working to transform the lives of people living with epilepsy as we lead the search for a cure.

[@MaryMacElveen]

I just came across your channel. My first Epileptic seizure was when I was 15; I am now 66. My seizures are and have always been tonic clonic. While Epilepsy is not the worst disease to have, the aftermath of a seizure is quite daunting in nature. I keep taking my meds to keep the Seizures at bay. I just wish they could find a cure. Thank you.

[@CUREepilepsy]

Thank you for sharing that with us. Your experience reinforces our commitment to fund breakthrough research to find a cure. We'd be honored for you to share this story with the rest of the CURE Epilepsy community on our website: www.cureepilepsy.org/about-epilepsy/personal-stories

[@ElDuderino502]

I first had a seizure when I was twelve, thanks to undiagnosed hydrocephalus, and didn't have another until I was twenty, at which point I was diagnosed with epilepsy. It's such an individualized and diverse condition. I'm always interested in other people's experiences with it. I just ordered your book. 👍

[@patrickconnolly2654]

A seizure during a conversation? Wow. For me, the most insane confusing part of the seizure is during the aura/leading moments is the inability to find words to explain, understand, or even feel fear.

[@miro9440]

What I just heard was the most accurate description of what I experience to date.

[@springskyllark]

I just had my first tonic clonic seizure a week before my 26th birthday after over a year of suspected focal aware seizures. I guess now the journey begins 🦋 Thank you for sharing your story!

[@CookingwithGrandmas]

Stress is most definitely a trigger for seizures!

[@rutendokadzere7563]

Thank you for the explanation. Epilepsy is complicated for sure..

[@Steelers205]

I will hear music but can't figure out the song

[@anwaranwar-je3wr]

Hi I am new here and recently was diagnosed with having seizures. I dont have the Grandmal seizures, but I have the partial seizures. This is an embarrassing question to ask, but does anyone here think that certain sounds can trigger a seizure? Sometimes the feeling of de javu comes on after I hear a certain word, or maybe sound. I cant ever remember what it is after words. Also I might be watching tv, or doing nothing and suddenly a word, not even a word sometimes ( more like a made up word ) will pop into my head and it gives me the feeling that a siezure is going to happen. I know this sounds crazy, but if anyone can relate I would appreciate it greatly.

[@donball8289]

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...

[@CUREepilepsy]

Thank you for sharing your story with us. Epilepsy is not easy to live with and we continue working hard to find a cure.

[@Daniel-fb8rm]

Im in New Zealand and have recently changed from sodium valporate to lamotrigine.They started me off at a pretty low dose of 75mg and a month into it i had a tonic clonic seizure in my bedroom.Tge ambulance was called ,they eere going to leave me home but i had a second one and ended up in hospital overnight.They put my dose up to 100mg.I was so depressed it messes with my whole life.I was diagnosed when i was 16 im 44 now and apparently its just over electrical spikes in my brain.

[@CUREepilepsy]

Thank you for taking the time to share your story with us. Your situation shows just how important it is that we fund breakthrough epilepsy research as we work towards a cure while supporting those living with epilepsy.

[@linguisticsdrums9215]

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!

[@ProjectAzorian]

That was incredible!

[@SuperWilbur77]

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 !

[@crysp8203]

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

[@johnmacleod2923]

Had first seizure as a baby then had them thru childhood. I stopped having them around 30 but had one in October 2022 at 61 first one in about 30 years then another one in April of 2023. Im back on meds after many years on nothing I take keppra for them.

[@ProjectAzorian]

Thank you so much 😢

[@chinookvalley]

A muscle biopsy diagnosed my epilepsy, which was a shocker finding out it was genetic. I was 45.

[@jasonkahoud614]

How frequent do you get your hair cuts and shave your beard. I find that when I have longer hair and find excess friction, especially in cold dry air when static electricity generates faster I’m more prone to focal awareness. The other controls are having massive carbohydrate intake higher than usual which leads to higher stim. Have you tried committing to a strict keto diet.

[@heatherstratta3266]

I tryed the vns didn't even work, dr said that he couldn't remove the scar on my left temple lobe

[@heatherstratta3266]

With my first one as a baby, an inner ear infection, pediatric put me on phenobarbital. I didn't have any more . But no testing was done. We i was 18 i had a grandmal seizure , went to a neurologist ask me i ,wanted to wait until I have another one before being on medications. Oh when i got to hospital with the seizure your pregnant?what 😊, they didn't know i was having focal too, 17 year not knowing

[@heatherstratta3266]

I started keppra and zonagan , but now I'm not depakote vimpat abivact and xcopri

[@Njeri3344]

mine started 15. i have been taking lamotrigine since 16. i’m now 22. seizures have stopped however i am recognising the personality change. it sucks. tried therapy. my friends and family don’t know how to act around me. i try to be normal but it feels impossible. people have asked if im autistic and it’s kind of humiliating tbh

[@CUREepilepsy]

Please know that you are not alone. We suggest reaching out to the Epilepsy Helpline through the Epilepsy Foundation at 1800-332-1000 or here: www.epilepsy.com/247-helpline They can give you tools including connecting you with an epilepsy support group. That can be a great way to connect with other people with epilepsy or caregivers to people with epilepsy. You may also want to contact your healthcare provider who can recommend a therapist or counselor. Again, you are not alone. You can find stories of others within the epilepsy community on our website here: www.cureepilepsy.org/personal-stories/

[@seucroch]

Same!!!! Every 25 days

[@seucroch]

And my seizures started at 45

[@seucroch]

I have a 5 and a 2 year old my heart goes to you

[@ProjectAzorian]

❤