Epilepsy or seizure disorder? Why stroke?

Posted by tonyde @tonyde, Sep 26, 2023

Do I have epilepsy or a seizure disorder? How do they differ? What would cause a stroke? My neurologist tells me my MRI's show many strokes and has asked "when did you have your last seizure?" or stated "let's try these meds to control your seizures". He has never referred to my having a seizure disorder or epilepsy and, for whatever reason, I'm relunctant to ask. My seizures started after a car accident 20 years ago and were referred to as frontal lobe partial complex seizures. My seizures were under control for many years, three years ago they have increased in intensity to "grand mal" type seizures, have become more frequent and sometimes multiple seizres a few minutes apart. I have had difficulty speaking and walking for as much as 12 hours after a seizure, a few caused ER visits and I have been hospitalized twice. I had one seizure while in the hospital that caused me to make very loud noises, I overheard the nurse say "I heard him all the way down to the nurses station", the neurologist replied, "I would have thought he was faking had I not saw that" and the nurse said, "we called in the stroke team". I was too out of it to ask questions. What would have caused a stroke?

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Hi @tonyde
I do also have difficulty with speech during and after my complex seizures and get very confused after them, depending on their intensity. This is something normal that happens after a seizure, according to my epileptologist.
I just had one experience of generalized seizure (tonic-clonic) and the effects on my speech and clarity were even more severe. It took me several days to recover myself.
Have a nice weekend!
Chris (Santosha)

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@santosha

Hi @tonyde
I do also have difficulty with speech during and after my complex seizures and get very confused after them, depending on their intensity. This is something normal that happens after a seizure, according to my epileptologist.
I just had one experience of generalized seizure (tonic-clonic) and the effects on my speech and clarity were even more severe. It took me several days to recover myself.
Have a nice weekend!
Chris (Santosha)

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@santosha
@tonyde
@1775house
I also have Postictal seizure confusion which includes language, speech, writing, and thought forgetfulness and also have it when not having seizures. Occasionally, the most basic words both in speech, writing and spelling elude me.
Do you guys have these symptoms of Aphasia during normal everyday conversations or when writing?
Jake

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@jakedduck1

@santosha
@tonyde
@1775house
I also have Postictal seizure confusion which includes language, speech, writing, and thought forgetfulness and also have it when not having seizures. Occasionally, the most basic words both in speech, writing and spelling elude me.
Do you guys have these symptoms of Aphasia during normal everyday conversations or when writing?
Jake

Jump to this post

I've had issues with talking and walking after a seizure, once it last for the entire next day. I also have had episodes where I suddenly fall backwards, and only backwards, with difficulty speaking, lasting less than a minute. A few were followed by an emotional breakdown, very embarrassing.

Are there triggers to your seizures? Stress and exhaustion seem to be two of mine.

Do you have any signs that a seizure is about to happen? Sometimes are feel like something is wrong a few seconds before, often it comes with no warning.

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@tonyde
I have never had a warning of any kind preceding any seizures although I did have one focal aware seizure (aura).
I still remember it. It was a déjà vu episode, all the rest of my seizures I have no memory of. Even though I was on the floor, in a crosswalk, porch, shopping center, school, police department, beach, roller coaster, stairs, elevator, aching and my tongue and cheek bit to pieces and painful someone always had to tell me I had a seizure. I bet I had one in every imaginable place. When my dad was in the hospital in Phoenix, my mom and I were living down there in a cheap duplex, and I had a seizure and fell through the wall into the next duplex. I would give anything to remember that. They sure were surprised.
I never did know of any triggers. I know it wasn’t poor quality sleep because back then I always slept at least 12 hours a night straight through. I haven’t had a seizure since one day in Aug 2019 when I had six.
Thanks for your reply,
Jake

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@jakedduck1

@santosha
@tonyde
@1775house
I also have Postictal seizure confusion which includes language, speech, writing, and thought forgetfulness and also have it when not having seizures. Occasionally, the most basic words both in speech, writing and spelling elude me.
Do you guys have these symptoms of Aphasia during normal everyday conversations or when writing?
Jake

Jump to this post

Hi Jake - @jakedduck1
I do also have those symptoms in my everyday activities, forgetting words, movies I have already watched, names of people, etc. But after a seizure, it is much worse.
I have asked my doctor why I did not have memories and naming problems before, though I had already temporal lobe epilepsy. Those problems started in 2017, when I was 46/47 years old and my seizures increased and intensified. What my doctor has told me is that my temporal lobe seizures over the years have caused changes in memory and naming structures. Those changes are microstructural lesions in those structures (not in the hippocampus). The seizures do undermine our cognitive reserve.
Have a good week!
Chris (Santosha)

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@tonyde

I've had issues with talking and walking after a seizure, once it last for the entire next day. I also have had episodes where I suddenly fall backwards, and only backwards, with difficulty speaking, lasting less than a minute. A few were followed by an emotional breakdown, very embarrassing.

Are there triggers to your seizures? Stress and exhaustion seem to be two of mine.

Do you have any signs that a seizure is about to happen? Sometimes are feel like something is wrong a few seconds before, often it comes with no warning.

Jump to this post

Hi @tonyde

I have learned some time ago a classification of triggers that I find interesting: physical, external and internal.
Physical triggers:
Examples: glúten, little or bad sleep, menstruation, low sodium, flashing lights, etc.
External Triggers:
Speaking in public is something that stresses me much and is an external trigger to my seizures
Internal Triggers:
Examples: emotions such as fear, stress, anxiety, rage, etc.

I do have signs that a seizure is going to happen, though I do not always remember them after the seizures. I believe the seizure erased that from my memory. When I have this sensibility I try to stop what I am doing and do some breathing. It helps sometimes. Give it a try.

Chris (Santosha)

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@jakedduck1

@tonyde
I have never had a warning of any kind preceding any seizures although I did have one focal aware seizure (aura).
I still remember it. It was a déjà vu episode, all the rest of my seizures I have no memory of. Even though I was on the floor, in a crosswalk, porch, shopping center, school, police department, beach, roller coaster, stairs, elevator, aching and my tongue and cheek bit to pieces and painful someone always had to tell me I had a seizure. I bet I had one in every imaginable place. When my dad was in the hospital in Phoenix, my mom and I were living down there in a cheap duplex, and I had a seizure and fell through the wall into the next duplex. I would give anything to remember that. They sure were surprised.
I never did know of any triggers. I know it wasn’t poor quality sleep because back then I always slept at least 12 hours a night straight through. I haven’t had a seizure since one day in Aug 2019 when I had six.
Thanks for your reply,
Jake

Jump to this post

Jake,
My seizures are mostly focal (simple and complex partial ones). I can just remember one tonic-clonic I had in 2019. This was such a strong seizure, that all what happened before the seizure was erased from my memory. I might have had a warning, but I can not remember. Perhaps the same happens to you?
Management of my triggers has helped me to control some of my seizures. For example, knowing that low sodium can cause a seizure, I do always take a drink with high sodium in the gym and when it is very warm over here (Gatorade and Tomato Juice). I do a daily epilepsy journal (even on days I do not have a seizure), which has helped me to identify my physical, external, and internal seizures. It has given me some work, but it has paid off.
Chris (Santosha)

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@santosha
“I might have had a warning, but I can not remember. Perhaps the same happens to you?”
I never thought of that. Since I have no memory of the seizures I suppose an Aura could be erased also.
Jake

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Hi @jakedduck1
I have had some partial complex seizures that appeared without a warning. But most of my seizures are preceded by a warning. Therefore, I believe that when I can not remember the warning of a seizure, this warning was erased from my memory by the seizure or I have not paid enough attention to the signs.
Chris

REPLY
@jakedduck1

@tonyde
I have never had a warning of any kind preceding any seizures although I did have one focal aware seizure (aura).
I still remember it. It was a déjà vu episode, all the rest of my seizures I have no memory of. Even though I was on the floor, in a crosswalk, porch, shopping center, school, police department, beach, roller coaster, stairs, elevator, aching and my tongue and cheek bit to pieces and painful someone always had to tell me I had a seizure. I bet I had one in every imaginable place. When my dad was in the hospital in Phoenix, my mom and I were living down there in a cheap duplex, and I had a seizure and fell through the wall into the next duplex. I would give anything to remember that. They sure were surprised.
I never did know of any triggers. I know it wasn’t poor quality sleep because back then I always slept at least 12 hours a night straight through. I haven’t had a seizure since one day in Aug 2019 when I had six.
Thanks for your reply,
Jake

Jump to this post

Sorry to hear about the seizures in public, I've been fortunate not to have serious seizures in public except twice in a hospital and once in an office with only a few people.

I've had a sense of something being wrong before smaller seizures, don't remember any before a major seizure just finding myself on the floor still out of it with difficulty walking and talking sometimes for hours.

Reading everything here made me realize that the seizure may have wiped out any memory of a warning sign.

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