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A MyEpilepsyTeam Member asked a question 💭

They stop my seizure medicine ,I started stuttering alot more and having migraines after seizures. They all want to say pnes and I don't know what to do anymore I have fits and I do not call 911 or go to hospital. Only if I had migraine for 4 or 5 days
Because of the way the medical staff treat me in Juneau,AK yet neurologist wants proof and my family refuses to call anyone for help if they see any activity because they want it to be factitious or pnes
My sister use to fake her seizures… read more

posted November 15, 2022
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View reactions
A MyEpilepsyTeam Member

Try and get a hold of the Epilepsy Foundation in your state . They maybe able to help you find an Epileptologist or someone better than who you have now. Anyone ( Doctors) who knows and understands Epilepsy, is always better at understanding you too, most of the time.

posted November 16, 2022
A MyEpilepsyTeam Member

Was your sister really faking them seizures, was she properly medically evaluated ?
I can't comprehend how a person can fake a seizure it's not easy to do .
I don't trust doctors diagnosis when it comes to figuring out the cause of seizures because ive read so many stories of people being diagnosed with Epilepsy to later being told its PNES or being told they have both or being told its PNES but it's epilepsy it's like one big guessing game.
Personally I think you being off medications is the right thing to do till you figure out what's going on because I find medications can mask alot of symptoms that are important clues to what's going on or they can create more symptoms which make you confused.
You need to trust how you feel do you agree with diagnosis or is there something telling you it's wrong.

posted November 16, 2022
A MyEpilepsyTeam Member

Like this it it why man kind makes duct tape and sells over the counter medicines mix and fix no Dr required

posted November 19, 2022
A MyEpilepsyTeam Member

I have been given many eegs since my TBI, and they told me for years I wasn’t having epileptic seizures. I believe I was having them from the beginning after the injury. But they only registered as seizures after I had one in public and fell out of my seat in a restaurant! There are so many known types of seizures now that I don’t know how the old EEG test can pick them all up. Part of it is who’s doing and reading the test, too. I find many doctors think they know more than they really do (arrogant), and and can therefore be less likely to consider alternative diagnoses to the one they have made, sometimes even when the new diagnosis is where the evidence takes them.

posted November 16, 2022
A MyEpilepsyTeam Member

In my records they have two positive eeg's with epileptic fits recorded , 1 inconclusive eeg and 2 normal eegs . They diagnosed me with left HS (atrophy) hippocampus sclerosis and massive frontal lobe lesions from early cerebral insult tbi and cluster seizures . So I'm confused that they want to say whatever they are going to say I just need the right medication my brain is on fire with migraines, small seizures and it f**king hurts all the time it is making going to university very hard 🖤

posted November 16, 2022

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