Prolonged confusional state after series of seizures

Posted by Leonard @jakedduck1, Jun 10 10:19am

Good morning everyone,
Apparently last month I had a series of seizures. I still don't know how many I had. My friend said she had been trying to contact me for a couple days and decided to come over. Fortunately my front door was unlocked and I was found in my recliner seizing. I knew I was in the hospital once but I'm being told I was an inpatient there twice. I know amnesia is common in seizure patients but I'm still so confused. I get up to go into the kitchen and I ended up standing in the shower which is in the opposite end of the house. I still knew I wanted to go to the kitchen but I couldn't find it. It's like when I come out of the post ictal phase and even though I'm on the floor & my body aches from the contractions and my tongue and cheeks are all chewed to pieces I have no idea I had a seizure until I'm told. It's as though the post ictal confusion in coming and going. In my 58 years of seizures this has never happened before. And I have not known anyone that has experienced this prolonged confsional state.
Has anyone here experienced anything like what I'm trying to explain?
Thanks,
Jake

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Hi Jake - @jakedduck1
I am so sorry to hear you had such experience, recently.
I, in 2022 had a series of seizures because of the J&J Covid vaccine and this lasted 10 days in total. During those days, especially at the beginning, I was quite confused with the 13 complex partial seizures a day I had. I understand you had tonic-clonic seizures which are even stronger and leaves us more confused.
Did you have any changes in your medication recently and/or any changes in your life style?
Praying for you to get better and over all that soon!
Hugs,
Chris (@santosha)

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@santosha

Hi Jake - @jakedduck1
I am so sorry to hear you had such experience, recently.
I, in 2022 had a series of seizures because of the J&J Covid vaccine and this lasted 10 days in total. During those days, especially at the beginning, I was quite confused with the 13 complex partial seizures a day I had. I understand you had tonic-clonic seizures which are even stronger and leaves us more confused.
Did you have any changes in your medication recently and/or any changes in your life style?
Praying for you to get better and over all that soon!
Hugs,
Chris (@santosha)

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@santosha
Yes, I ran out of one of my meds. The pharmacy didn't have the brand name in stock.
I wasn't functioning on all cylinders at that time either. For whatever reason I never thought to go to another pharmacy or get some meds from my brother. I know I'm not the brightest bulb in the chandelier, but even so I'm not normally this irresponsible. I know how important my medicine is. I have chanced going without my medicine for a day before, but even that is risky. I would increase my Phenobarbital but this time no luck. Last night I found out these started in the middle of May.
I'm curious if I was in Status Epilepticus. Maybe they put me in an induced coma. I only remember a few days in the hospital but apparently it was much longer and more than once. I have no memory of the other hospitalization.
I’m hoping to get some medical records today and talk to some friends more in the know so I can somewhat reconstruct what happened.
Thanks for your message Chris.
Take care,
Jake

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@jakedduck1

@santosha
Yes, I ran out of one of my meds. The pharmacy didn't have the brand name in stock.
I wasn't functioning on all cylinders at that time either. For whatever reason I never thought to go to another pharmacy or get some meds from my brother. I know I'm not the brightest bulb in the chandelier, but even so I'm not normally this irresponsible. I know how important my medicine is. I have chanced going without my medicine for a day before, but even that is risky. I would increase my Phenobarbital but this time no luck. Last night I found out these started in the middle of May.
I'm curious if I was in Status Epilepticus. Maybe they put me in an induced coma. I only remember a few days in the hospital but apparently it was much longer and more than once. I have no memory of the other hospitalization.
I’m hoping to get some medical records today and talk to some friends more in the know so I can somewhat reconstruct what happened.
Thanks for your message Chris.
Take care,
Jake

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@jakedduck1
Hi Jake,
I am so sorry to hear all that. I hope very soon you will have a better picture of what happened to you exactly. If I can be of any help, please do not hesitate to reach me.
Crossing my fingers for you!!!
Chris (@santosha)

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Hi @jakedduck1
How have you been? Did you already have a better picture of what has happened?
Looking forward to hearing from you!
Chris (@santosha)

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@santosha
No, it’s still a blur. My medical records weren't much help at all.
Chris, after you have a seizure do you ever have any amnesia issues?
Take care,
Jake

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@jakedduck1
Hi Jake, a very Good Morning to You!
I am so sorry to hear that the medical records were not of much help to explain what has happened to you :-(.
Yes, for sure after a seizure (my seizures are complex partial ones) my memory is affected, depending on its intensity. But slowly, some hours after the seizure, my memory comes back and I can remember some facts before I had the seizure. Not all facts, sometimes.
My epilepsy has affected my memory and this was clearly shown in a neuropsychological evaluation. For example, there are movies I have seen in the past that I can no longer remember, even while watching them again.
Did I answer well your question?
Yesterday, I landed back in São Paulo city and it feels good to be back home. But being more than 1 month away from this city that never sleeps and spending time in a small and calm city, I have noticed clearly how the stress of this huge city affects me and my husband. Both of us were sleeping much better. I had more energy than I have here in São Paulo city and my memory was also better. And I did not have seizures for almost one month, only when I arrived due to a cold that I caught and some fever. It is all interconnected.
Wishing you a good weekend!
Chris

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@santosha123
Thanks Cris. You answered my question.
I have another question, what do they do during a neuropsychological evaluation?
Take care,
Jake

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Hi Chris and Jake, I was just reading your dialogue and Jake, hope things are settling for you and much better. You also, Chris. Just got out of hospital ER this weekend myself but nothing like you experienced. My daughter recognized some signs and spent the night. Sure enough I had a nocturnal tonic clonic and couldn’t wake up. I always have some memory problems afterwards - some clear up, some don’t. Praying you both are better🌺

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My first seizure was a day of Amnesia, confusion and migraine. I’ve had Amnesia / confusion just about every time. I have temporal lobe epilepsy, which affects memory.

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@jakedduck1

@santosha123
Thanks Cris. You answered my question.
I have another question, what do they do during a neuropsychological evaluation?
Take care,
Jake

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Hi Jake,
In a neuropsychological evaluation, there is an interview and then tests are given to evaluate brain functions. My neuropsychologist was very carefull and my evaluation was done in 4 different days. After that, she made analysis comparing my performance to the average of people of my age and education level, writing a report which she has discussed with me and my husband. My temporal lobe epilepsy has affected both my cognitive and executive functions.
Here an extract of what I have found on internet and is consonant with the experience I had.
"Tests of intellectual functioning, attention, learning and memory, reasoning and problem-solving, visuospatial skills, and language, as well as mood and personality. An interview with the patient and a family member or friend, if possible. Medical record review"
Here is a link with more information on it:
https://my.clevelandclinic.org/health/diagnostics/4893-neuropsychological-testing-and-assessment
Hope that every day it gets better for you!
Chris (@santosha)

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