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No but now I keep hearing I am having tonic-clonic seizures. I guess they have learned some much about episodes they needed new definitions for all different versions
My seizures were called Petit-Mal as a child. Later Partial , then Absence Seizures. I was recently told they are Partial Awareness Seizures.
I would like to know who does the naming as well.
Leslie Weinberg
We are in October 2023 now.
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?
Yes the seizures can change. Mine did from absent to complex to complex and fall.
https://www.epilepsy.com/what-is-epilepsy/seizu...
The the link above will take you to page the Epilepsy Foundation created on their site, and activated it in December 2016 to explain the new classifications of the Epilepsies and all of the epileptic seizure types by the International League Against Epilepsy (ILAE). The LIE-- which is included in every statement from the ILAE and by too many modern doctors is that these changes were made for the Epileptics and their families, as well as, the… read more
this is my devence... yes, the 'lobe' is your brain but my frontial lobe has many uses (speech, motor, talking, ect). that and when i was diegnoed, thay called it a partial seizures.
Having been epileptic all my life and seeing multiple name changes to seizure types why is it important to learn the new name changes of seizure types which will be obsolete in years to come probably?
I agree with the post here, but me having my condition, it doesn't really bother me what they name it or call it etc, I'm not gonna let it get to me,
A full moon makes my puppy kind of crazy which = a lack of sleep = which does tend to increase absent seizures (is that still the term? this stuff has changed so much over the last 2 decades. )
How do people feel about changing medication, I have been advised it would be beneficial for starting a family to come of carbamazepine tegretol, and increase my dose of levetiracetam to control my tonic clonic seizures, and take folic acid.
As I have taken carbamazepine for 15 years I am really anxious at the thought of changing medication due to my seizure been so well controlled with tegretol.
The thought of changing is making me not want to have kids, the thought of having uncontrolled… read more
@A MyEpilepsyTeam Member The other thing is If your currently on a higher-level dosage and there is still a chance of it going up then you may have to come off it further down the track anyway as the… read more
I've got complex partial seizures with identified abnormality in my temporal lobe. Seizures are focal so my neurologist said surgery is an option I should consider, but I'm pretty scared and not sure it is worth it. My seizures aren't very bad and I could still lead a mostly-normal life but I plan to become a doctor and with sleep deprivation being a major trigger for me it may prevent me from pursuing my desire to work in a hospital (which means long hours). Im not sure about the process of… read more
When I was young, I was diagnosed with petite mal based on eeg and symptoms. But in my mid teens, my diagnosis was changed to temporal lobe, again based in a different eeg and symptoms. Has this happened to anyone else? And if anyone has an answer as to why this happened, I would love to hear about it!
I wasn't told outright but for years my paperwork listed mine as "drug resistant" generalized epilepsy
I have been referred for some testing because of the ways the pattern and severity has changed… read more
My husband suddenly started having grand mal seizures about 6 years ago completely out of the blue and was diagnosed with epilepsy about 6 months after his first cluster of seizures. He was young (27) fit and healthy and strong as he is a farmer, since the epilepsy began he has changed in almost every way... can anyone else relate?
I can’t relate , since I had Epilepsy almost my whole life. But, there is a possibility , that his seizures or medication side effects, or both are causing his personality change