From your description, you have two seizure types, both probably coming from the same place.
My guess would be it's your left temporal lobe, especially if you are right-handed, but that would need to be confirmed with imaging studies and EEG. At any rate, the seizures are starting near your language centres.
In the first seizure type, you probably have very rapid spread ("secondary generalization") to the rest of the brain. Most of the brain getting caught up in the seizure is not epileptic, but it is being over-stimulated by the seizing part, and starts to fire excessively. You rapidly lose consciousness because there is not enough intact cortical function to sustain your model of your self and the environment. You seem to bounce back out of these seizures with minimal confusion, with your language centres working quite well, so the overall duration must be short. Inhibitory mechanisms of some sort must be kicking in and terminating the seizure before the language centres have taken too much of a beating. Those mechanisms are not understood, but even low oxygen might be helping to terminate the seizure.
In the second seizure type, the parts of the brain that are not themselves prone to spontaneous seizures - the parts that were innocent bystanders in the first seizure type - don't get caught up in the event. They keep working, allowing you to notice and remember the misbehaviour of the seizure-prone part, which clearly involves language cortex either at onset or after very minimal spread. This type of seizure would probably be called a focal dyscognitive seizure, but the terminology varies. The misbehaving part keeps fitting for longer and with more vigour, because some inhibitory or ameliorating process that happened in the first seizure is not getting activated.
In one way. these second seizures are milder, but, at the place where they actually start, they are more severe.
Your speech and language disturbance has two phases. During the focal seizure, those parts of the brain are busy firing for their own pathological reasons, not processing language, so you can't use them to speak. Most of the trouble at that point seems to be near Broca's area, but you could also have other issues like a verbal apraxia, or perhaps your awareness is a little more impaired than you realise. After the seizure, those parts of the brain are no longer fitting, but they are stunned, deplete in energy stores, all their chemical gradients mucked up, and unable to do their job.
That means you have a combination of ictal dysphasia (loss of language during the seizure) and post-ictal dysphasia (loss of language during the recovery phase).
Your post-ictal dysphasia is a mild mixed dysphasia, not localisable to a single area. Your failure to recognise incorrect words as wrong implicates Wernicke's Area. Hesitation and frustration is more typical of involvement of Broca's Area. You have a bit of both. Pure involvement of output centres usually leaves comprehension (and recognition of errors) almost entirely intact, so you do not have a pure output syndrome.
You could map out the deficits in more detail by getting someone to do a more complete language assessment during the post-ictal phase. For instance, they could ask you to follow a 3-step command, ask you to repeat a phrase, and ask you to name simple everyday objects (and then rare objects.)
Obviously, this is all conjecture. based on partial information, so you would need to check with your own neurologist and see to what extent imaging and MRI supports this set of hypotheses. Focal epilepsy that does not respond to medication is often treatable with surgery, but that obviously comes with risks.
A few little comments where I know the answers below. I’m not expecting you to give me a complete diagnosis… But I thought you might be interested. I am curious to learn too though.
For the two seizures where I lost consciousness, I was fitting (clonic-tonic) for around fifteen minutes followed by maybe ten minutes of no movement, reactions or awareness. When I awoke, I had no memory of the episode and no lingering effects at all.
I am sure that my focal seizures begin in my left temporal lobe (and I am right handed). I am aware throughout the whole episode but I am overwhelmed by a frantic rushing at the start that lasts about 20 seconds. In the last episode, I was able to get up from the dinner table and run to a safer spot while this was happening. The time before, everything went dark and I collapsed, though I was still conscious.
After the seizure passes, I can understand all of the inbound communication and sight clearly, but it takes a long time to speak. For the first few minutes, I can’t get anything out that makes sense. Things improve after that, but I can’t manage most nouns — or, especially, proper nouns — for about thirty minutes. I struggle with names for much of that time, even my wife’s name, and I didn’t know basic facts like birthdays or where I live. I expect that soon after the seizure is over (I will have to read up on ‘post-ictal phase’), I would pass all your repeat-back tests but fail all the object name tests.
It’s very difficult for me to get an appointment with a neurologist but I have an appointment with my lovely neuro-oncologist next week (I have a glioma that started in my left temporal lobe). I’ll ask her and I’ll let you know what I learn.
So sorry to hear that the cause is a tumour. I hate the buggers.
I might have misunderstood what you wrote. When you underline a word that you think makes sense, and your family don't seem to get it, I assume that the word is nonsense and you don't recognise it as nonsense?
To me, that suggests a small component of input dysfunction, perhaps confined to written language. Could you follow a three-step spoken command? A three-step written command? These are purely academic questions, but if you get your family to test next time, the results might give you better insight into what is happening to you. People often have worse input function than they realise, because the part of the brain that judges performance is also affected.
But I agree most of your dysphasia is involving the output centres.
I’ll write instructions for my wife to test me next time! Lets hope its not for a while.
When I tried to write, the letters were well-formed but the words were nonsense. I had no idea that what I was writing was garbage until afterwards.
By contrast, when I am speaking, I recognise immediately that what is coming out of my mouth is wrong and I stop. I can form the sentences clearly in my inner thoughts but they won't come out of my mouth. Not even proper syllables. Of course, although my sentences are well formed in my head, they are short on nouns, because I can't remember what they are.
To me that sounds like you have no real receptive dysphasia during the post-ictal phase, but you do have dysgraphia and dyslexia with associated lack of awareness of your own dyslexia, a form of temporary anosognosia (lack of awareness of a deficit). https://en.wikipedia.org/wiki/Anosognosia
It would be a bit unusual to have your input issues solely confined to text, but not impossible.
You might find that your ability to hold a 3-step command in your head and execute it is also impaired during the post-ictal phase. If your wife tests you, it is important that she gives you no non-verbal cues, like gestures (or objects with a purpose so you can guess what she wants), and she gives you all 3 steps before you start.
For repetition, a standard phrase for testing is "No ifs, ands, or buts". It has the advantage of not creating any imagery that you could use to assist with the task.
Hopefully you will never get another chance to test all this.
Wow, that's the kind of story that puts petty daily problems in stark perspective. I can imagine it must be terrifying. And I can also imagine that writing about it helps.
Your approach sounds very like mine. I had a few problems before the pandemic and was more interested in analysing the problem than worrying about it. (Bridge of Spies: James Donovan: You don't seem alarmed. Rudolf Abel: Would it help?)
Don't forget that reducing the blood supply can make an organ shut down or malfunction so it doesn't need direct physical pressure.
It is probably more difficult for your aunt to notice her shiny pee 😉 I hope everything works out for her.
My family wouldn't talk about it for the first year or two. They are a bit better now that I have started having seizures. We were even talking about the end times over the weekend. They still won't read my blog, though.
it all sounds absolutely terrible. I admire your tenacity in doing the degree and in participating on the substack. I know we seldom agree on things political and economic but you have my respect. Best wishes
I'm also finding it hard to find words to express my sympathy. What an amazing example of resilience you are, getting your degree in these circumstances - that is a legacy for others 👏🏻
Neurologist here.
From your description, you have two seizure types, both probably coming from the same place.
My guess would be it's your left temporal lobe, especially if you are right-handed, but that would need to be confirmed with imaging studies and EEG. At any rate, the seizures are starting near your language centres.
In the first seizure type, you probably have very rapid spread ("secondary generalization") to the rest of the brain. Most of the brain getting caught up in the seizure is not epileptic, but it is being over-stimulated by the seizing part, and starts to fire excessively. You rapidly lose consciousness because there is not enough intact cortical function to sustain your model of your self and the environment. You seem to bounce back out of these seizures with minimal confusion, with your language centres working quite well, so the overall duration must be short. Inhibitory mechanisms of some sort must be kicking in and terminating the seizure before the language centres have taken too much of a beating. Those mechanisms are not understood, but even low oxygen might be helping to terminate the seizure.
In the second seizure type, the parts of the brain that are not themselves prone to spontaneous seizures - the parts that were innocent bystanders in the first seizure type - don't get caught up in the event. They keep working, allowing you to notice and remember the misbehaviour of the seizure-prone part, which clearly involves language cortex either at onset or after very minimal spread. This type of seizure would probably be called a focal dyscognitive seizure, but the terminology varies. The misbehaving part keeps fitting for longer and with more vigour, because some inhibitory or ameliorating process that happened in the first seizure is not getting activated.
In one way. these second seizures are milder, but, at the place where they actually start, they are more severe.
Your speech and language disturbance has two phases. During the focal seizure, those parts of the brain are busy firing for their own pathological reasons, not processing language, so you can't use them to speak. Most of the trouble at that point seems to be near Broca's area, but you could also have other issues like a verbal apraxia, or perhaps your awareness is a little more impaired than you realise. After the seizure, those parts of the brain are no longer fitting, but they are stunned, deplete in energy stores, all their chemical gradients mucked up, and unable to do their job.
That means you have a combination of ictal dysphasia (loss of language during the seizure) and post-ictal dysphasia (loss of language during the recovery phase).
Your post-ictal dysphasia is a mild mixed dysphasia, not localisable to a single area. Your failure to recognise incorrect words as wrong implicates Wernicke's Area. Hesitation and frustration is more typical of involvement of Broca's Area. You have a bit of both. Pure involvement of output centres usually leaves comprehension (and recognition of errors) almost entirely intact, so you do not have a pure output syndrome.
You could map out the deficits in more detail by getting someone to do a more complete language assessment during the post-ictal phase. For instance, they could ask you to follow a 3-step command, ask you to repeat a phrase, and ask you to name simple everyday objects (and then rare objects.)
Obviously, this is all conjecture. based on partial information, so you would need to check with your own neurologist and see to what extent imaging and MRI supports this set of hypotheses. Focal epilepsy that does not respond to medication is often treatable with surgery, but that obviously comes with risks.
Thank you so much, Zinbiel. You are so very kind.
A few little comments where I know the answers below. I’m not expecting you to give me a complete diagnosis… But I thought you might be interested. I am curious to learn too though.
For the two seizures where I lost consciousness, I was fitting (clonic-tonic) for around fifteen minutes followed by maybe ten minutes of no movement, reactions or awareness. When I awoke, I had no memory of the episode and no lingering effects at all.
I am sure that my focal seizures begin in my left temporal lobe (and I am right handed). I am aware throughout the whole episode but I am overwhelmed by a frantic rushing at the start that lasts about 20 seconds. In the last episode, I was able to get up from the dinner table and run to a safer spot while this was happening. The time before, everything went dark and I collapsed, though I was still conscious.
After the seizure passes, I can understand all of the inbound communication and sight clearly, but it takes a long time to speak. For the first few minutes, I can’t get anything out that makes sense. Things improve after that, but I can’t manage most nouns — or, especially, proper nouns — for about thirty minutes. I struggle with names for much of that time, even my wife’s name, and I didn’t know basic facts like birthdays or where I live. I expect that soon after the seizure is over (I will have to read up on ‘post-ictal phase’), I would pass all your repeat-back tests but fail all the object name tests.
It’s very difficult for me to get an appointment with a neurologist but I have an appointment with my lovely neuro-oncologist next week (I have a glioma that started in my left temporal lobe). I’ll ask her and I’ll let you know what I learn.
Thank you again for your kindness.
So sorry to hear that the cause is a tumour. I hate the buggers.
I might have misunderstood what you wrote. When you underline a word that you think makes sense, and your family don't seem to get it, I assume that the word is nonsense and you don't recognise it as nonsense?
To me, that suggests a small component of input dysfunction, perhaps confined to written language. Could you follow a three-step spoken command? A three-step written command? These are purely academic questions, but if you get your family to test next time, the results might give you better insight into what is happening to you. People often have worse input function than they realise, because the part of the brain that judges performance is also affected.
But I agree most of your dysphasia is involving the output centres.
I’ll write instructions for my wife to test me next time! Lets hope its not for a while.
When I tried to write, the letters were well-formed but the words were nonsense. I had no idea that what I was writing was garbage until afterwards.
By contrast, when I am speaking, I recognise immediately that what is coming out of my mouth is wrong and I stop. I can form the sentences clearly in my inner thoughts but they won't come out of my mouth. Not even proper syllables. Of course, although my sentences are well formed in my head, they are short on nouns, because I can't remember what they are.
To me that sounds like you have no real receptive dysphasia during the post-ictal phase, but you do have dysgraphia and dyslexia with associated lack of awareness of your own dyslexia, a form of temporary anosognosia (lack of awareness of a deficit). https://en.wikipedia.org/wiki/Anosognosia
It would be a bit unusual to have your input issues solely confined to text, but not impossible.
You might find that your ability to hold a 3-step command in your head and execute it is also impaired during the post-ictal phase. If your wife tests you, it is important that she gives you no non-verbal cues, like gestures (or objects with a purpose so you can guess what she wants), and she gives you all 3 steps before you start.
For repetition, a standard phrase for testing is "No ifs, ands, or buts". It has the advantage of not creating any imagery that you could use to assist with the task.
Hopefully you will never get another chance to test all this.
Thank you! I’m talking with my wife now and coming up with a list of things to ask me. I'm very curious now.
Yes, let’s hope we never find out though.
Wow, that's the kind of story that puts petty daily problems in stark perspective. I can imagine it must be terrifying. And I can also imagine that writing about it helps.
My family doesn't love talking about it. Writing about it definitely helps.
Your approach sounds very like mine. I had a few problems before the pandemic and was more interested in analysing the problem than worrying about it. (Bridge of Spies: James Donovan: You don't seem alarmed. Rudolf Abel: Would it help?)
Don't forget that reducing the blood supply can make an organ shut down or malfunction so it doesn't need direct physical pressure.
All the best. I'm thinking of you.
Malcolm
Thank you, Malcolm.
It bothers Mrs Clown a bit that I want to write it all down, but I find it a good way of dealing with everything.
It is probably more difficult for your aunt to notice her shiny pee 😉 I hope everything works out for her.
My family wouldn't talk about it for the first year or two. They are a bit better now that I have started having seizures. We were even talking about the end times over the weekend. They still won't read my blog, though.
actually it's a twinkle at the far right of my field of view.
All the best in finishing the philosophy degree. You certainly have tackled neuroscience.
Thank you!. I'm doing my best!
That sounds incredibly frightening. I hope you find the words again.
JiT
This sounds so frightening , and you are studying, and writing on Substack, really truly impressive.
it all sounds absolutely terrible. I admire your tenacity in doing the degree and in participating on the substack. I know we seldom agree on things political and economic but you have my respect. Best wishes
Thank you, Jos. Its not too bad most of the time. It was just bad and bleak this weekend.
I'm also finding it hard to find words to express my sympathy. What an amazing example of resilience you are, getting your degree in these circumstances - that is a legacy for others 👏🏻
Thank you so much, Bettina. ❤️