United States, Female, Age 20. University student in Mathematics and Physics.
I have an inquiry regarding information about or the experience of people who have complex partial seizures with secondary generalization.
I was diagnosed with absence, partial, and complex partial seizures of the temporal lobe with secondary generalization when I was about 6 years old but had been experiencing seizures to where I can recall them at age 4. My seizures were termed as "burning out at night" (whatever exactly that may mean) by neurologists when I was in 4th grade. Eventually, the seizures stopped once I left elementary school.
At the end of my 9th grade year, I randomly began having the same seizures again, only with more intensity when it comes to what I physically and mentally experience.
Here is what happens during the c-p seizure w/ secondary generalization:
-I am fully conscious throughout the seizure, and entirely aware of my surroundings. I have no visual or sound distortions. I have no automatisms (no lip smacking, picking, arbitrary movement or stiffening of limbs, doing random tasks or senseless talking, etc.)
-Despite the immense level of electrical activity in my brain that several neurologists at the George Washington medical institute and D.C. Children's Hospital concluded to be activity that puts patients into a tonic clonic seizure/unconscious, I do not display any of the physical symptoms of a secondarily generalized seizure. In other words, I have the electrical abnomarlity of a violent secondarily generalized seizure (as shown on EEGs and nMRIs) but do not display any of the physical events that others experience.
-I dislike noise, movement, and being touched or interacted with in general. I often hold my breath or inhale a very miniscule amount during the seizure because, if I inhale as I usually would, the seizure discomforst becomes more intense, and it almost feels like I have water up my nose. I'll often find a soruce of comfort by pulling a blanket or pillow over (if near by) or have my cat to sit with me. I experience deja vu, old memories I am certain are real but forget as soon as the seizure is over, and what feels like "an impending sense of doom." The seizures last for about 30 seconds-2 minutes, as my boyfriend has timed.
-However, as stated above, my perception of my environment is not altered, I am fully conscious, and can perform just about any task requested of me, albeit with much discomfort and resistance to do so in that moment. (Tasks such as turning off a piece of machinery, getting up to set something on a table [a test I did to myself], or anything else asked of me. Evidently, I am able to fully wire pieces of electronics equipment on a bread board during my seizures).
At the original time of my diagnosis at age 6, neurologists told my parents that they had heard of no other case of epileptic seizures like mine in the United States, at least. It is difficult for me to believe this, especially as medical records, awareness, and care have continued to improve over the last two decades.
So, I would like to know:
Does anyone on this board have or know someone who has secondarily generalized seizures without the physical symptoms, AND/OR has complex partial seizures of the same nature as mine?
As a potentially important side note, I have an asymmetrical brain with a significant amout of scar tissue between hemispheres caused in utero.