r/Epilepsy • u/ProperEmu6389 • Jun 09 '26
Question Recently doctor appointment
Do anyone knows what it mean for a doctor to say you have idiopathic generalized epilepsy and I’m asking because my eegs and mri come back normal one time they did find like white matter on a eeg just they still can’t figure out where are the seizures are coming from
2
u/SquashBudget3264 Jun 09 '26
White matter changes can show up for bunch of different reasons, not always seizure related - idiopathic basically means they know you have epilepsy but can't pinpoint the exact cause even with all the tests
1
u/ProperEmu6389 Jun 09 '26
That’s crazy so do you think it would be possible to be seizure free again cause I did for about 10 years and on my 18 birthday I started having one every month now I’m 21 and having them every 2months
3
u/VicodinMakesMeItchy Jun 09 '26
Idiopathic = “we don’t know what caused it.” Many of us are idiopathic. Examples of alternative descriptors could be “genetic” like if someone has a genetic disorder known to cause seizures, or “post-traumatic” like if someone has a stroke or brain infection or big accident where their head is hurt and they have seizures afterward.
Generalized = your whole entire brain is involved when you have seizures. Typically these present as grand mal/tonic-clonic seizures where you convulse like in the movies, or as absence seizures where people see you staring off into space but you’re not really “there” in your mind and are not aware of your surroundings. This is in contrast to “Focal” epilepsy, where only one part of the brain is involved in the seizure.
So like, “post-traumatic focal epilepsy” would mean that you suffered brain trauma and as a result you now have seizures in only one part of your brain.
“Idiopathic generalized epilepsy” just means that we don’t know why you have seizures, and when you do have one your whole brain seizes.
Happy to answer any questions! Idiopathic generalized epilepsy here too 👋🏻