Epilepsy Talk
Confessions of 20 Years with Epilepsy… | May 7, 2024
When I was first diagnosed as a teen, no one knew what to do with me.
My parents refused to use the “E” word. People treated me like I was some kind of pariah. (Which didn’t make me feel warm and fuzzy either).
Guys never called back for a second date.
The Dilantin made me feel like a zombie…I even went into a coma once.
And my beautiful, long hair was falling out.
I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.
I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.
One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.
So I quickly had to make up some lame story. I couldn’t even have a seizure in peace!
Epilepsy was my “dirty secret.” Like it or not…
Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was amazed and said to myself: “He’s a keeper!” And he has been for 44 years.
Then, a few years ago, I almost died. My heart stopped, I had two heart attacks, was in a coma and on life support for 5 days. Then I was in the hospital itself for 5 days, until I was transferred to another hospital for rehab, followed by 4 weeks of out-patient.
But I still couldn’t button a shirt or tie my shoes, no less find the key board. Exasperation turned to tears. I was useless.
Yet there was certainly time to think. (Almost dying can certainly change your perspective.) And I realized I was one of the lucky ones. After all, I was still alive. And I was better off than a lot of other people who had Cancer, Alzheimer’s, Cerebral Palsy, and Parkinson’s, to name a few.
So I decided to turn lemons into lemonade. I ditched my day job (I had my own freelance writing business for 35+ years) and I became a full-time epilepsy advocate…helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.
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Epilepsy Talk 
In contrast to your story, I developed epilepsy after my first brain tumour, which scarred my temporal lobe. I had my first seizure, a tonic-clonic, about two months after surgery, and couldn’t reach the telephone. When it stopped, I asked my neighbor to drive me to the ER, which was so busy, I had to wait, had two more sz, ending up on the floor before another patient or family member/friend told the triage nurse. The triage nurse put me in a wheelchair by his desk until a room became available.
I also started with Dilantin, which damaged my liver, so started a long trial of different ASMs, like flinging spaghetti on the ceiling and seeing what sticks. I took Lamotragine for many years, but suddenly got a red, itchy rash, Stevens-Johnson Syndrome, and had to stop immediately. I now take 3 other drugs, which do not control my sz.
I have another brain tumor (my motto: “That which does not kill you comes back and tries again and gives you a morbid sense of humour”), and am looking for home healthcare. “I have seizures, so please stay calm and don’t freak out.”
Thanks for your column, which is my inspiration and an educational source for others not to freak out!
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Comment by qmfub — May 7, 2024 @ 11:43 AM
This is a great article that I can truly relate to. Thank you and to those of you r reading this article,please do not freak.out when you see somebody having a seizure.
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Comment by Jill Whiting — May 7, 2024 @ 2:11 PM
qfud, Dilantin gave me terrible gum disease and my beautiful long hair went sparse.
I can remember being in a room having a tonic conic and the nurse asked if I was nervous.
Like you say, that which doesn’t kill you doesn’t necessarily cure you.
But your resilience and sense of humor are amazing.
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Comment by Phylis Feiner Johnson — May 13, 2024 @ 9:54 AM
It’s seems amazing to me how many people have epilepsy and how ignorant people in the medical community are, like the nurse you mention above, about symptoms and treatment. Plus well meaning friends and family members. I’ve had to educate people about when a seizure is a regular seizure, please don’t freak out and insist I go to the ER, and when it IS a real emergency, and I DO need to contact my physician. Having epilepsy means becoming a teacher, as well, hopefully before post-ictal aphasia!
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Comment by qmfub — May 13, 2024 @ 11:54 AM
You’ve certainly been through the mill and then some. The most unforgiving thing is the medical care you did not get.
That is reprehensible.
As for the drugs, they’re always a pot shot. But it’s quite clear you need others.
Your spirit is strong and the thing that will get you through.
I pray for a resolution.
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Comment by Phylis Feiner Johnson — May 7, 2024 @ 12:31 PM
I have appreciated every post. Thanks for sharing that lemonade Phylis.
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Comment by Flower Roberts — May 7, 2024 @ 2:13 PM
For me, it just doesn’t matter. It’s all about the side effects. The very best I’ve felt in the past 35 years was 2 weeks after brain surgery – because I had gone 4 straight weeks without taking medication. The first 100mg Tegretol pill hit me as a 4th grader. And the side effects from any amount of any medication I’ve tried simply never will go away. Memory is a big disadvantage. Half the reason I went through with the surgery was because I would have believed it if I was told that I had already done so – if it had occurred after I started taking medication. I can remember the ‘80s like they were yesterday.
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Comment by Stephan Escabar — May 13, 2024 @ 1:24 AM
Steven, how has the surgery affected you? Are you still on mountains of meds?
Are you disappointed for promises unfulfilled?
This might sound ridiculous, but science has proven that these strategies really work:
Memory games to boost your brain… https://epilepsytalk.com/2022/02/07/memory-games-to-boost-your-brain-3/
Memory Tips You (Hopefully) Won’t Forget! https://epilepsytalk.com/2022/02/05/memory-tips-you-hopefully-wont-forget/
I’ve seen a friend rise from the ashes with consistent rounds of Sudoku. For her, it worked miracles.
Hey, I know it’s a pot shot. But maybe you would be as lucky.
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Comment by Phylis Feiner Johnson — May 13, 2024 @ 9:43 AM
I appreciate this honest comment so much. My Rose has lost memories due to medications, the stroke and seizures. My heart breaks for her.
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Comment by Flower Roberts — May 13, 2024 @ 6:22 PM
My daughter has temporal lobe epilepsy since having febrile seizures as a baby. No meds worked. Two years ago her new neurologist advocated for her to get Epidiolex, the CBD oil. It has been a miracle. It may not work for you, but often it is never tried. She still takes lamictal and Sympazan but the oil has been life changing. Also, after 15 years, I finally insisted she be see at a level 4 epilepsy center for testing. That is where she got prescribed the oil. The neurologist she had previously just accepted her seizures as normal.
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Comment by Anita D — May 8, 2024 @ 6:40 AM
I’m so sorry your daughter reached a stage when she accepted her seizures as “normal.” No child should have to accept this. Kudos to you for keep pushing for 15 years. Our medical system needs fighting moms like you.
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Comment by qmfub — May 13, 2024 @ 11:59 AM
Anita, I know from a friend that Epidiolex can be a real game changer. Glad you were able to go to a Level 4 Epilepsy Center. I imagine you wish it was sooner, without your passive neurologist.
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Comment by Phylis Feiner Johnson — May 8, 2024 @ 10:08 AM