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May 5
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A MyEpilepsyTeam Member

Yes, but I don't obsess over it. That subtle thought process isn't all bad though. It influences me to quietly examine the risks in activities I choose to do. For example, I went fifteen months after my last seizure before reinstating my driver's license, even though by law in my state I could have re-applied after being 6 months seizure-free. It's not just the possibility of a breakthrough seizure I consider; it's also the degree of impairment caused by the meds.

Even so, if there's the option, I let someone else drive. It also makes me reconsider water recreation, power tool usage, heights, or anything else that could potentially expose myself or others to harm. Necessity is the mother of invention. Safety first. Realistically, it's necessary for me to invent ways to compensate and to manage these risks for everyone's benefit.

I was diagnosed at 62 y/o, so there was a before and after. Realization of the loss of my independence was immediate. I continue to try and claw back as much of it as possible, but only to a degree, since my "carefree" days are over. I know I have to accept it and adapt.

May 6
A MyEpilepsyTeam Member

Yes, I still worry about that but not obsess over it. Last seizure was in 2018.

May 6
A MyEpilepsyTeam Member

Yes. There are people with epilepsy , who were seizure free for many yrs. Then from out of the blue the have what is call a BreakThrough Seizure.
Some may get their seizure back under controlled and some may struggle getting them 100% controlled.

May 5
A MyEpilepsyTeam Member

Not personally but I have heard of it being a thing. Personally I find the less you think about it as a whole the better it is to manage.

May 5
MyEpilepsyTeam

Do persistent thoughts about having a seizure linger, even after being seizure-free for years?

Absolutely — and you are far from alone in feeling this way. Many people with epilepsy carry a quiet background worry about seizures, even during long seizure-free stretches. It's a very human response to something that can feel Show Full Answer

Do persistent thoughts about having a seizure linger, even after being seizure-free for years?

Absolutely — and you are far from alone in feeling this way. Many people with epilepsy carry a quiet background worry about seizures, even during long seizure-free stretches. It's a very human response to something that can feel unpredictable. Members of MyEpilepsyTeam have shared similar feelings, including fear of sleeping in case a seizure happens, and anxiety about returning to normal life after a seizure-free period. One MyEpilepsyTeam member shared that even in their best stretch since their first seizure, they found themselves asking "are you afraid of happiness?" — showing how deeply this fear can settle in.

Some things that may help manage these persistent thoughts include:

- Mindfulness or meditation to help quiet anxious thinking
- Talking to others who truly understand the experience
- Challenging intrusive thoughts when they arise
- Focusing on what you can control, like managing known triggers such as stress, sleep, and alcohol

It's worth mentioning these feelings to a doctor or mental health professional too, as ongoing anxiety can itself be a stress trigger worth addressing.

May 5

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A MyEpilepsyTeam Member asked a question 💭
Brampton, ON. Canada