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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
What Is Epilepsy?
A MyEpilepsyTeam Member asked a question 💭

Isn't epilepsy a seizure disorder, or only seizures originating in the brain. I been told I don't have epilepsy as my brain does not show any abnormal activity. But I do have seizures or some seizure like nerulogic event. Can EEG see all brain activities? I do suffer from PTSD, anxiety, and chronic pain, but I also have peripheral neuropathy, carpal tunnel in both wrist, along with daily seizures. So am I Epiletic or not......seems to me that medical science is just scratching the surface… read more

posted December 2, 2021
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A MyEpilepsyTeam Member

Seizures or grand mall eplisisy, I knew, my doctor told my parents something had to be done before brain, damage and there was no turning back 4 my future plans! Today I live with it,I just got a call,? Have set appointment up? Overdue!yes everyone thought I would just set back and be another disable person I'm strong, I may be in pain that's ok ,I'm have a back brace the doctor's at home in comfortable home they will someday be me I will pray there pain will not be like mine! I put all my feelings in art try it I sold my tiger a year ago that made my day ,do something ! Relax! Live

posted December 6, 2021
A MyEpilepsyTeam Member

There are different forms that can be defined as seizures but in short its your brain i wanna say goes koo-koo and depending on where your brain goes koo-koo different seizures can happen. (Also i heard epilepsy wasnt an illness but a disorder hate to nit-pic sorry)

posted December 6, 2021 (edited)
A MyEpilepsyTeam Member

I've had quite a few EEGs during the last 43 years All were 'normal' I tried to explain that I was having events for 24-36 hours ( including post ictal confusion ) In the end the consultant arranged for me to have an EEG on a day when I felt very spaced out. When he got the results he then believed me So much seizure activity He then told me I was having ' non ,-convulsive status epilepticus' So many partials over a 24 hour period

posted December 5, 2021
A MyEpilepsyTeam Member

There are what is called non epileptic or psychogenic seizures. Where theres a seizure, that is very real but the electrical activity in the brain is different than an epileptic seizure. Epilepsy is having 2 or more seizures with a certain type of abnormality activity in the brain. Now it could be they havent caught your seizures on testing, if you dont have a seizure while doing an EEG the activity most of the time will appear normal. Some of my eegs, appeared normal cause nothing went on, and some of them ny seizures were caught. If you dont feel like your getting the propper treatment you can always go for another opinion, i wpuld recommend trying to get in with an eptoligist. Someone who focuses on epilepsy and who knows it more than other neurologists perhaps and can hopefully give you betger treatment.

As far as labels go i totally get it, it sucks to be labelled but from a medical standpoint labels do help get the propper treatment. If the seizures are non epileptic seizures the treatment would be different than treatment for epilepsy.

posted December 3, 2021
A MyEpilepsyTeam Member

I was originally diagnosed with a seizure and tremors disorder in 2015. My doctor did not believe i had epilepsy and may eventually get off meds. I only recently been officially diagnosed with epilepsy due to my constant seizures when i got off my meds. Also they got worse than before and doesnt look like this would go away.
I did have a different doctor when i got diagnosed the second time. So a neurologist opinion does play a role in what you get diagnosed as. The more information they get and more tests will help them get an understanding of what you have and how to help you.
If you feel like you dont agree with what your doctor is saying, go get a second opinion. At first i saw 3 different doctors before i choose the one that worked for me.

posted December 3, 2021

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