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Having Epilepsy How Does It Feel If You Are Told Not To Worry About Your Seizures Because You Know You Will Be Okay Afterwards?

A MyEpilepsyTeam Member asked a question 💭
Hesperia, CA
November 27, 2023
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A MyEpilepsyTeam Member

I agree Philly & Marguerite stress is not good.

November 27, 2023
A MyEpilepsyTeam Member

People Can't or will not learn about what this disease does.
Those types of people simply don't care.
We suffer from a disease that is lifelong. I went 27yrs without having one and then they came back like a vengeance. Thru those years my mind ran slower than normal.
My cognitive abilities would become worse after each seizure. Thou I was able to keep a full-time job on medication taken.
Associates would take advantage of these issues and steal your work for their own personal gain.

November 29, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I would think that person didn’t know much about seizures. I myself have had a seizure and
1. Ridden a bike into a barbed wire fence
2. Fallen into a pond, more than once, where I could have drown but someone rescued me
3. Been found laying on the side of a street where a car could have run over me
4. Cut my arm and finger on an electric saw and had to get stitches and a cast
5. Been found laying on the ground in a parking lot where a car could have run over me
So Sonya, we won’t always be fine after a seizure.

November 27, 2023
A MyEpilepsyTeam Member

It was advice to a group on another site regarding how to handle epilepsy and I just found the advice left a bad taste in my mouth. From trusting the doctors to know what’s best for you, and knowing that my seizures will never be out of control, to epilepsy not being fatal. Now I trust doctors but I also trust myself to know when somethings not working for me and the medical advice is not working. I hope my seizures never leave me debilitated but they can be unpredictable in its timing and effect. As far as epilepsy being fatal unfortunately it can be due to sudep. So those were some of the things I addressed with the person. I believe the person was trying to help others to not be depressed about epilepsy and I get that but the statements seemed off target which was the reason for my question.

November 27, 2023
A MyEpilepsyTeam Member

No one has told me that. I don't worry because I don't know when the next one will happen. For me worrying is stress and stress a trigger for me which could cause the next seizure.

November 27, 2023

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