A Post-Traumatic Epilepsy Journey: Diagnosis Acceptance Leads to Career Helping Others
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- Опубліковано 17 жов 2024
- This week on Seizing Life ® Mark DeFee shares his 26-year journey with post-traumatic epilepsy. Mark tells his personal PTE story from his diagnosis as a high school Senior following multiple concussions sustained playing high school football, through his years of denial and living recklessly in college, to his acceptance and efforts to manage his seizures, ultimately leading to a successful career counseling others.
Mark speaks about the social, psychological, and physical impacts of both his epilepsy and the anti-seizure medications prescribed to control his seizures. He talks openly about his desire to keep his diagnosis a secret in college and the risky choices he made during his early years in school including joining a fraternity, drinking, and hiding his nocturnal seizures. Mark also shares the epiphany he experienced during a study abroad program his Junior year, and how it initiated a change in his outlook and behavior that led him to consciously create a lifestyle that would allow him to manage his epilepsy and live a fun, productive, fulfilling life during his last two years in school. This change ultimately opened the door for Mark to pursue a career in mental health as a counselor, and he provides advice for others going through the stages of accepting their own epilepsy diagnosis. Mark’s story, experiences, and insights will provide guidance and hope for both people navigating epilepsy and those who love them.
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Thanks for the video.
I used to keep my seizure history to myself, but now I wear a wristband, and tell people I'm around about my epilepsy so they know what's going on if I have any kind of seizure.
I had my first grand mal seizure back in 1962 when I was 11. I was briefly put on phenobarbital, but my father lost his job and we moved and we never discussed it again in my family. And I got no more treatment for it. Even though with the knowledge I have now, I believe I had several absence seizure incidents between then and the end of my high school years.
5 years ago I had a seizure while driving and totaled out my car. I was unconscious during the impact. I woke up in my car, crawled out and saw I had read ended another car. I tried to speak to the ladies in that car and couldn't get words out so they moved away from me. It turned out they thought I was drunk. My sister tells me a police officer came into the hospital to find out how much alcohol was in my blood. When they told him there was none, he was surprised and wrote it up as a medical cause for the wreck.
I don't remember the next 2 days in the hospital, but I have read their notes since then. I was going through status epilepticus which they measured on an eeg. Since I couldn't communicate with them, their personnel got my cell phone out and tried to call people on my contact list. My local friends and relatives knew nothing about my previous seizure history so they started treatment for both seizures and a possible stroke. Finally they were able to contact my sister who knew about my 1962 seizure. In the mean time they got a cat scan and MRI and finally ruled out a stroke.
They put me on 750 mg of levetiracetam twice a day, and a week later they had to make an adjustment to increase my dose from 750 mg twice a day to 1000. And it's now considered "not intractable". I only see a neurologist once a year to check on how I'm doing and renew my prescription.
And now I meet other people who are living with epilepsy. In fact one couple in church thought they were having some kind of discipline problem with a young teenage daughter who would sometimes just stare and blink her eyes when they were trying to talk to her. After hearing me discuss epilepsy they took her to a neurologist and got an epilepsy diagnosis.
Thank you both for sharing the reality of Epilepsy. 😢
I am in tears right now.
Thank you Mark for telling your PTE story. I also suffer from PTE which began from an auto accident 26 years ago. The fact ours started so close together makes me feel connected with you. I feel fortunate mine began after my school years finished (I had just completed my BA 4 months previously) I deeply admire you for how you completed your 12th year with epilepsy. That’s a tough time.
You have also achieved so much since your seizures began. Your story is very educational for anyone needing to understand what it takes to get through those years and I love your advice on life! Best to you and yours.
Mark, thank you for sharing your journey. Kelly, thanks for this great podcast.
I had my first seizure at 17 in 2008 and another in October 2008 they both were grand mal seizure and then they told us that I had epilepsy.
👍🏻👍🏻👍🏻
I was diagnosed with Photosensitive Epilepsy when I was 2 and had my Seizure Tumor surgically removed when I was 8.
Is it possible for laser eye surgery to fix my sensitivity?
We are unaware of any studies on LASIK helping with photosensitive epilepsy. We suggest speaking with your doctor to get their opinion.
I was nevered told why I have epilepsy
I hate when hospitals and doctors offices are so matter of fact with you and don't give you information in a way that you can understand because we patients aren't medically knowledge in the terns they use. Also not as forth coming with everything. I want to be told everything good bad and ugly in detail and not made to feel like your being rush and can't have someone to really spend time with you to talk to you and explain things and you get any questions asked and answered.
I'm severely epileptic too, and have grand mal seizures. I go status epilepticus almost every time. Have been hospitalized by ambulance over 70 times...
Thank you for sharing your story with us. Epilepsy is not easy to live with and we continue working hard to find a cure.
@@CUREepilepsy I surely hope with every fiber of my being to not have to deal with these seizures anymore someday. It is truly exhausting...