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A MyEpilepsyTeam Member asked a question 💭
London, UK

We all talk about that little word yet it covers so many medical conditions/symptoms I often ask myself seizure or epilepsy. As the description of epilepsy is recurrent, unprovoked seizures yet we all describe "triggers" which are provocations literally speaking. Years ago, I had generalised seizures which were triggered by severe hypoglycaemia, yet there was no endocrine reason for the hypoglycaemia - it was the result of faulty neurotransmitters (there's even a term for it now - catecholamine… read more

October 16, 2025
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A MyEpilepsyTeam Member

This is my definition and meaning of Epilepsy
A condition of the brain causing abnormal brain waves. The abnormality of the brain causesthe person to convulse or have seizures.

October 17, 2025
A MyEpilepsyTeam Member

Mantle. Again. How can we say "25 years seizure free" when we know that visible physical responses to seizures make up no more than one in five seizures we have. I'm happy for you. I very much doubt I will ever be seizure free although generalised events have all but ceased. To add to that, so have the hobbies that provided me with such joy when suffering generalised seizures. I just have to suffer ten plus focal seizures a day in comfort - knowing it will never get better due to sclerosis.I'm no inspiration. I AM an example of how little most of our treatment providers know about such a complex subject however.

October 20, 2025
A MyEpilepsyTeam Member

Epilepsy differs in so many ways. A lot of people have curable cases. A lot of us will just have to live with it. It can be one part of the brain. It could be all over. Some of us like myself had trouble with seizures for a long time then found I was a candidate for surgery. Then come more questions: Is it gonna work? It doesn't work for everyone. Will I have total control? I'll be satisfied with better control.

My biggest problem now is this - I wanna be an inspiration not an irritation. November 5, 2000 is the date of my last seizure so I'm very close to 25 seizure-free years and I'd never feel better than to see a lot more of us headed that way.

Sorry, I got carried away but I just wanna encourage people to find a way to battle with epilepsy and I pray you will defeat it.

October 20, 2025
A MyEpilepsyTeam Member

I get what ur saying its like they talk about other things besides this to me epilepsy is a health condition that needs to be brought up

October 20, 2025
A MyEpilepsyTeam Member

You see no one can give an answer. Not the Emeritus Professor of Endocrinology at Oxford University. Nor his counterpart and top professors at the Oxford University global epilepsy centre. The truth is that the interaction with autonomic failure is fundamental to grasping means of finding a genuine cure for the condition. We now have a" Catecholamine Epilepsy" and progress is miles off. They need to invent a monitor that allows the recording of the CNS 24/7 on severe epileptics.

October 20, 2025

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