Prolonged confusional state after series of seizures

Hi @earlylonghauler
I also have temporal lobe epilepsy and the neuroevaluation has shown that not only my cognitive function, but also my executive one was affected. My seizures start at the left temporal lobe and through this evaluation it was observed that they might also expand to the frontal lobe, main area of executive function.
Did you also experience executive function decline with your epilepsy? Are your seizures just partial ones or do you also have tonic-clonic/generalized seizures? You might have mentioned it on other post, but I can not remember. Sorry for that.
Here an extract explaining the executive function in a simplified way that I found on internet:
"The phrase “executive function” refers to a set of skills. These skills underlie the capacity to plan ahead and meet goals, display self-control, follow multiple-step directions even when interrupted, and stay focused despite distractions, among others."
And here a link with more information on executive functions, in case you are interested: https://my.clevelandclinic.org/health/symptoms/23224-executive-dysfunction
Chris (@santosha)

Hi Chris, now that you mention it - yes, my executive function was affected, particularly in the weeks prior to the tonic clonic that led to my diagnosis. My doctors have not mentioned “executive function” as an issue to me but your description sounds like something I have experienced on some level. In the weeks before my first (and only so far) tonic clonic seizure, I noted that I had trouble remembering things. I feel like the memories are there, but the index to them is broken, damaged, or missing. Another way to describe it is as if you have a notebook that you use to keep track of things to do. Except the notebook becomes increasingly smaller, then just scattered pieces of paper, smaller and smaller in size, until all you have is a jumble of papers with no order, and no ability to find any one piece of information. I’m currently on Vimpat which does not fully control my seizures - I have had a number of focal seizures since - but it has prevented the seizures from going global. I will be switching to Briviact soon in hopes it controls all seizure activity better. I’m starting my second year with Epilepsy. I keep track of all seizure activity on a spreadsheet, so far just over a dozen, most since starting Vimpat. Hopefully Briviact works better for me. All the best to all!

Hi Jake, All my seizures involve some level of confusion. I think there is a bit of denial as well. The confusion is real because sometimes after a seizure I forget I’m supposed to take an emergency med to prevent another seizure. I have thought about putting security cameras throughout the house to capture any seizure activity, possibly learn more about what happens during a seizure, or document any injuries. Have not done the cameras yet. I did get an Apple Watch as a health and safety device. I can make calls with it hands-free (“Siri, call 911”) or to call any of my emergency contacts - just have to remember to use it, which is not easy when seizures leave us confused. The watch also monitors heart rate and other vitals so after an event you can see what happens to your vitals during a seizure. All the best, - Miguel

@santosha
My seizures are primarily Generalized, including rare Absence and mostly Tonic-Clonic seizures. I also have Focal-aware and Focal- Impaired seizures but they are seldom. I have Frontal lobe Epilepsy which isn’t good for executive functions.
My executive and cognitive functions have definitely declined.
take care,
Jake

Hi @earlylonghauler
Thank you so much for sharing your experience with me and all here in our group!
Now that you have given me example of a notebook, I just remember that one doctor said once to me that memories are not lost, they are stored in the brain. It is the hippocampus that retrieves those memories and with a sclerosis on my hippocampus left side, this retrieval system is not working well anymore as before. The doctor also said that hippocampus is the organ responsible for storing new events on our memory and this storage of new memories was also affected by my sclerosis.
I just do not understand, why I did not have such cognitive problems before? I have epilepsy since I am a teenager, though I did not know it, and my mind did work well. According to some doctors I have seen, my cognitive problems started at my late forties because of lack of diagnosis and treatment until 2019, when my epilepsy was diagnosed. Those 30 years without treatment have affected my cognitive capacity. According to my current epileptologist, I have always had this sclerosis and its size has not changed throughout those 30 years. So, I am still puzzled why I had such cognitive decline, if my sclerosis who makes the whole retrieval and storage system is unchanged.
I hope Briviact works well for you, crossing my fingers for it. Vimpat also did not work for me: it did not control all my seizures and I had terrible side-effects. But everyone reacts differently. Hope all works well with Briviact !!!!
Reading your answer to Jake, great that you are using a watch as a secutity device!!! As to watches, nowadays I have learned that when one has a tonic-clonic seizure (convulsion), watches are able to detect it well and send an alert to people registered on the watch. Unfortunately, there are not yet watches that do the same for complex partial seizures or impaired focal seizures (with no body movements).
Have you perhaps considered having a seizure dog? According to my researches, a seizure dog if trained well can preview a seizure before it happens. At home I thankfully get the support when I have a seizure. As you mentioned, I do also get very confused and can not take action by myself, not being able to make use of a rescue spray and or call anyone by phone. But there are some moments, that I am alone, especially outside home. Such a dog would give me more security to leave my home alone to do daily stuff (supermarket, pharmacy, walking in a park, etc.). Today we live in an apartment and a Golden Retriever which was recommended to us would not have much space. But we have plans to move into a house so that I can have my seizure dog :-).
Wishing you a lovely day!
Chris (@santosha)

Thank you @jakedduck1 for sharing that with me :-).
I hope you have been feeling better!!!
Have a very nice day 🙂
Chris (@santosha)

Your journey sounds like mine. Two years, on Vimpat but does not fully control, definite problems with executive function, memory and concentration issues, your description is very good.

And all my seizures are nocturnal tonic- clonic