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Has Your Type Of Epilepsy Changed Over The Years?

A MyEpilepsyTeam Member asked a question 💭
New York, NY

I at one time was told I had grand mal, then went to petite mal now I'm told I have generalized primary seizures. I tend to not understand how this is possible and wonder could doctors misinformed me or is it actually possible for the diagnosis to continuously changed and why/how does this happen. what causes this?

February 24, 2017
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A MyEpilepsyTeam Member

Yes the seizure types can change depending on the drugs, diet and growth of the person. When exposed to a drug it often only works on one aspect. so many times the drugs can give a better seizure type that is less damaging or dangerous. The diet can also change things in a similar way but from nature. We eat different foods and our needs change from winter to summer in many places. The growth of person through puberty changes our brains needs and introduces new hormones. Like for women many times the hormone swings can cause changes and new types in around the hormone cycles. All these things and more can change seizure types.
In terms of diagnoses .....yes the doctors have changed the definitions and terms of what a seizure is many times in my life time. Lots of new ways of labeling for precise record keeping happening all the times as they lean more. Example... as a kid they said grand mal.....now they refer to status and post disctal times and so forth. The definitions change to be more accurate but it can confuse us. The new EEGS are much better than the old and though other imaging they can see different types. This helps them select the right drugs in the ideal cases. If you seizures are trending towards less harsh ones the definitions are not to be worried about so much. In other words if the post dictal times are less and the headaches and dizzyiness is less that is the more important thing.....how is the seizure affecting you.....the name is just a name in some ways.....its more important to see how you feel or secondarily what is going on in the EEG or in the brain as a result. hope this helps. Keep on keeping on.

March 12, 2017
A MyEpilepsyTeam Member

Obviously, with all the answers from people with Epilepsy, yes changes occur. Medical experts, I presume, would confirm this. Personally, my seizures changed (from petit mal to grand mal) a few months after an operation on my left temporal lobe. The hope is that this is a temporary development.

February 26, 2017
A MyEpilepsyTeam Member

Fantastic news to share Danny! Inspirational to many - I hope. My seizure freedom after surgery has reach 7 yrs, 5 mos.

February 28
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A MyEpilepsyTeam Member

Your seizures can vary on a lot of things. Does Epilepsy run in your family? It runs in mine and I've been told I inherited it from my maternal great grandma. The very first one I had I was 16 months old. It was a petite-mal for 45 minutes and went into a grand-mal for 45 minutes. Then I went into a coma(I have no clue how long I was in a coma for.) Doctors aren't always right but if you have had MRIs, EEGs and CT scans, I'm sure they could see the information they needed. Yes, diagnosis can change. Mine has. I never knew seizures could spread. Mine started in my left temporal lobe(which I surgergicly had most of it removed in January of 2000.) A few years after that, my neurologist at the time found new seizure activity in my brain, in my right temporal lobe.

February 28, 2017
A MyEpilepsyTeam Member

Yes mine have changed, i think it have to do with the change of hormones as we get older.

February 26, 2017

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