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I Have Had 2 Grand Meals In My Lifetime And Am On Seizure Meds. Does It Make Sense To Come Off Medications?

A MyEpilepsyTeam Member asked a question 💭
Portland, ME
July 15, 2023
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A MyEpilepsyTeam Member

I wouldn’t unless your doctor said it was safe enough with evidence to support it. I learned the hard way about what happens when you go completely off your med.

One of my former doctor’s said my eeg came out clean and I could stop. Ended up having a grand mal once I got off the meds.

I found out later from my current doctor that my seizures are deep in my brain and that is probably the reason why the MRI keeps coming out clean.

July 15, 2023
A MyEpilepsyTeam Member

No it doesn’t make sense. Maybe reducing your medication doses but not be taken totally off.

July 15, 2023
A MyEpilepsyTeam Member

TDS, I’m the wrong person to ask. I was seizure free for 10 years, and just diluting their concentration in my blood was enough to cause a ‘grand mal’! Do you know what caused the original 2 seizures, and have you experienced any other symptoms at any time in your life? I don’t have any suggestions, that’s a question for your doctor, and doc only.

(I’ve been told to call it a complex temporal lobe or generalized seizure, depending on its characteristics, but grand mal is language we still understand).

July 15, 2023
A MyEpilepsyTeam Member

I had a three-year and four-year span of no seizures but didn't go off medications. I never felt comfortable enough to try until I had surgery and was 5 1/2 years seizure-free.

July 15, 2023
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