Mosab Hassan Yousef (AKA "The Green Prince"), a Palestinian Hamas defector who later spied on behalf of Israel against Hamas, calls our Cenk on his lack of experience/understanding of the region.
Relevant content between 25:27 and 28:01
A collection of pictures I took in Reykjavik and along the Golden Circle.
Just a nice evening in the center of Dubai.
​
Taken with fujifilm x-t4. 24mm, 1/125s, f11
Just a few highlights from my trip to Dubai 😊
This is actually a common symptom to TLE "difficulty explaining symptoms"
This applies to me 100%. I can only best describe it using generalized terms and using analogies to specific movie/book/videogame scenes. If I try to get into the details, it becomes increasingly difficult. It's almost like trying to explain to someone what water tastes like.
Edit:
Just to add on here. I made a video compilation of movies/videogames/other media that reminds me most about having a focal impaired awareness seizure.
Like the theme of this post it doesnt truly explain what its like, but the ambiance, feelings, and certain sounds in some of these videos capture a small fraction of it.
​
No idea why i chose to write this now after over 20 years of being an epileptic. Guess I'm remembering a lot of the past recently. Anyone have similar experiences?
TL;DR
I mainly have seizures where you become impaired but retain your awareness. They range from small sensations, ear ringing to loss of ability to speak or understand language, feelings of intense fear (gun pointed at your head fear) along with feelings as if the world around you is artificial, and feelings as if something is coming for you.
Yes, sometimes these evolve into generalized seizures (convulsions, memory loss, tongue biting, etc.)
Listed symptoms are not all inclusive, I still can't fully verbalize it. Movie/book/video game references sometimes help with that (The Matrix, Hellraiser, Mass Effect, Donnie Darko). The closest analogy actually comes from a passage in a book by Clive Barker "The Hellbound Heart" where extradimentional beings provide a form of sadomasochistic "sensory experience" to the summoner that ends up being torturous rather than pleasurable.
I still have long lasting problems from all the seizures over the years.
I was diagnosed as having focal impaired awareness seizures with secondary generalized seizures due to epilepsy (formerly known as complex partial seizure disorder) when I was 18. The symptoms, however, began at around 14.
Multiple EEGs and the nature of my symptoms described below led doctors to the conclusion that the neural misfiring was happening in my left temporal lobe (which is responsible for language comprehension, verbal memory, and processing auditory information).
When I have a seizure I am still conscious. My symptoms are incredibly difficult to explain (which is in of itself a common symptom). I'll explain as best as I can below:
When I have focal aware seizures: I remain fully concious the whole time. It always begins with a ringing in my right ear that sounds like a combination of a heartbeat and a zipper being zipped very fast which lasts for less than a second. This may not seem like a big deal, but it is extremely loud and would happen up to 50-100 times a day. It disrupted sleep, caused distress, and I began withdrawing socially. From ages 14-15 this was the only symptom I delt with.
I'll explain this in bullet form since there are clear "steps of severity":
Always begins with focal aware symptoms. Add on tingling/numbness on the right side of my neck that would sometimes go into my extremities which would "beat" in sync with my pulsatile tinnitus (the sounds) in my right ear.
Same as previous point. Add on "electrical zapping" to the sound in my right ear.
Same as previous points. This is where things start to get scary. Add on feelings of dread and fear. Feeling that the sounds were becoming too loud and "painful". External sounds distort and "worbble" My hand would often go up and hold onto my right temple and if people were around me, they would say I let out a quiet steady-pitched moan.
Same as previous points. The feelings of dread and fear turn into unadulterated panic. Imagine a cocked gun being pointed at your head. My body would shake slightly. Sounds in ear would evolve into something that sounded like a deep morbid tolling bell mixed with sounds that you might hear in a crowded room. Reality seems "artificial" along with feelings as if everything around me is "new". my thoughts would run with "why is this happening to me", "is this real", "am I dying". Loose the ability to speak, words that people are saying sound like gibberish
Same as previous points. Full on "cosmic horror". This has only happened to me once thankfully, and unlike the previous points lasted about 2-3 minutes instead of 30 seconds to 1 minute. Everything in the previous points (overwhelming already). Legs feel weak, i crawl on all fours. Horrible sensation that I'm being watched by something or someone. The sounds in my ear (crowded room, tolling bell, electrical zapping) manifest into what sounds like a voice with a high pitched "angelic" tone thats spoke once. (No, not psychosis, though i was afraid it was at the time and didnt tell anyone.). As fast as it starts, it disappears. All the intensity disappears in a flash. I still feel confused but the sounds, tactile sensations, voice, fear, ability to understand language, ability to speak, feelings of derealization, return in a flash. The confusion disappears after about 10 minutes.
See point #4 above, it always starts with a focal impaired awareness seizure. If people are around me they say I look like I'm in extreme pain and moaning loudly. I "blip out" complete unconscious nothingness. People say that I start bleeding out of my mouth from tongue biting, my neck muscles tighten to the point where my lips draw back unnaturally exposing my teeth. Shaking followed by ridgedness. Often, after the generalized seizure I have long lasting anterograde amnesia (inability to form new memories) essentially I become a "husk". I walk, speak, and function normally for hours but have no memory of these events. Things do still seem out of place to observers such as, remaining extremely tired and demanding that I be allowed to sleep, or that I just "dont seem like myself." Apparently the signs are strong enough that if they havent called an ambulance during the seizure, theyre calling it now. Then, suddenly I come back to full awareness because my brain is able to form new memories again. It feels like teleportation, from the moment my partial seizure reaches its peak to now, I have no memories, suddenly im somewhere else and dont know how I got there.
This doesnt represent everything in terms of what it feels like, but it does represent everything I able to describe in words. Sometimes I try to explain using references to specific movie clips, book passages, or video game cutscenes. Think "the matrix", "hellraiser", "Donnie Darko", "Event Horizon", "Mass Effect". The closest analogy actually comes from a passage in a book by Clive Barker called "The Hellbound Heart" where extradimentional beings arrive at the behest of a too-curious human to provide a form of sadomasochistic "sensory experience" to the summoner that ends up being torturous rather than pleasurable. They force him to "dream" first before taking him away for eternity.
As soon as I went on medication at age 18 all my symptoms disappeared immediately. I was very grateful for this at the time, many epileptics have to suffer through medications being ineffective. Symptoms eventually started returning after they tried taking me off medication 10 years later. Again, im still grateful, because I'm only occasionally left with a focal aware seizure once a week or so.
Despite being virtually seizure free now, the point at which it started in my life, combined with the frequency of occurrences, along with the longevity of the illness without the treatment damaged me across many aspects of my life. Listed below:
my short-term memory is noticeably impaired by both me and my neurologists. This doesn't affect my intellect/IQ (which is good), but it does affect my ability to convert new information into long term memory. Like having a difficult time being told a short sequence of numbers and being expected to remember it 5 minutes later. Or "zoning out" during a conversation and not remembering something that was just said to me a moment ago. This is very manageable though, I've learned to just politely ask the person talking to me to repeat what they said since "im slightly hard of hearing". On the off chance I dont pick up on it the second time, I nod as if I got it and pray that forgetting it doesnt bite me in the ass later.
Major Depressive Disorder is a very common co-morbidity associated with Temporal Lobe Epilepsy. If I remember correctly, up to around 30% of epileptics develop crippling depression compared to 7-8% of the general population. This is by far the worst lasting effect that I have. I won't get into too much detail here, but without an extensive course of medications, regular medical support, and hefty medical bills I become non-functional. Even on the most effective cocktail I truly lack the ability to feel emotions such as joy or pleasure. I'm convinced the seizures have permanently damaged my capacity to feel "ok".
Career derailments: lost my ability to serve in the military after the diagnosis. Was discharged shortly into a planned career in the Air Force and had to change my career goals at a young age. Ive also had points in life where ive been unable to work due to my health, which is inconvenient to say the least. Luckily im good enough at what I do to be lucky enough to have a good career.
Socially stunted (in childhood/teens): i don't know anything about child development, but i can only assume that almost completely withdrawing socially starting at the age of 14 and only ending it at the age of 18 can't be a good thing. Needless to say, I had a lot of issues learning how to socialize effectively with people for a long time. Luckily I did a lot of adventuring/international traveling/dating starting in my early 20s so I was able to fully "catch up" to my peers..... though I still have my very occational "autism" moments.
So, overall, there isnt really a "happy ending" for anyone with epilepsy, some (like me) are nearly seizure free when medicated and I'm grateful for that everyday honestly! And while there's lasting challenges I still deal with I mostly get to lead a normal life.
And while I'm most thankful that I don't experience literal torture everytime I have a seizure, when I do get that occational focal aware "buzzing" it does make me wonder sometimes.... will these fictional "cenobites" come for me again? And if they do what will they force me to "dream" next time? And what if this time I can't escape them?
​
No idea why i chose to write this now after over 20 years of being an epileptic. Guess I'm remembering a lot of the past recently. Anyone have similar experiences?
TL;DR
I mainly have seizures where you become impaired but retain your awareness. They range from small sensations, ear ringing to loss of ability to speak or understand language, feelings of intense fear (gun pointed at your head fear) along with feelings as if the world around you is artificial, and feelings as if something is coming for you.
Yes, sometimes these evolve into generalized seizures (convulsions, memory loss, tongue biting, etc.)
Listed symptoms are not all inclusive, I still can't fully verbalize it. Movie/book/video game references sometimes help with that (The Matrix, Hellraiser, Mass Effect, Donnie Darko). The closest analogy actually comes from a passage in a book by Clive Barker "The Hellbound Heart" where extradimentional beings provide a form of sadomasochistic "sensory experience" to the summoner that ends up being torturous rather than pleasurable.
I still have long lasting problems from all the seizures over the years.
I was diagnosed as having focal impaired awareness seizures with secondary generalized seizures due to epilepsy (formerly known as complex partial seizure disorder) when I was 18. The symptoms, however, began at around 14.
Multiple EEGs and the nature of my symptoms described below led doctors to the conclusion that the neural misfiring was happening in my left temporal lobe (which is responsible for language comprehension, verbal memory, and processing auditory information).
When I have a seizure I am still conscious. My symptoms are incredibly difficult to explain (which is in of itself a common symptom). I'll explain as best as I can below:
When I have focal aware seizures: I remain fully concious the whole time. It always begins with a ringing in my right ear that sounds like a combination of a heartbeat and a zipper being zipped very fast which lasts for less than a second. This may not seem like a big deal, but it is extremely loud and would happen up to 50-100 times a day. It disrupted sleep, caused distress, and I began withdrawing socially. From ages 14-15 this was the only symptom I delt with.
I'll explain this in bullet form since there are clear "steps of severity":
Always begins with focal aware symptoms. Add on tingling/numbness on the right side of my neck that would sometimes go into my extremities which would "beat" in sync with my pulsatile tinnitus (the sounds) in my right ear.
Same as previous point. Add on "electrical zapping" to the sound in my right ear.
Same as previous points. This is where things start to get scary. Add on feelings of dread and fear. Feeling that the sounds were becoming too loud and "painful". External sounds distort and "worbble" My hand would often go up and hold onto my right temple and if people were around me, they would say I let out a quiet steady-pitched moan.
Same as previous points. The feelings of dread and fear turn into unadulterated panic. Imagine a cocked gun being pointed at your head. My body would shake slightly. Sounds in ear would evolve into something that sounded like a deep morbid tolling bell mixed with sounds that you might hear in a crowded room. Reality seems "artificial" along with feelings as if everything around me is "new". my thoughts would run with "why is this happening to me", "is this real", "am I dying". Loose the ability to speak, words that people are saying sound like gibberish
Same as previous points. Full on "cosmic horror". This has only happened to me once thankfully, and unlike the previous points lasted about 2-3 minutes instead of 30 seconds to 1 minute. Everything in the previous points (overwhelming already). Legs feel weak, i crawl on all fours. Horrible sensation that I'm being watched by something or someone. The sounds in my ear (crowded room, tolling bell, electrical zapping) manifest into what sounds like a voice with a high pitched "angelic" tone thats spoke once. (No, not psychosis, though i was afraid it was at the time and didnt tell anyone.). As fast as it starts, it disappears. All the intensity disappears in a flash. I still feel confused but the sounds, tactile sensations, voice, fear, ability to understand language, ability to speak, feelings of derealization, return in a flash. The confusion disappears after about 10 minutes.
See point #4 above, it always starts with a focal impaired awareness seizure. If people are around me they say I look like I'm in extreme pain and moaning loudly. I "blip out" complete unconscious nothingness. People say that I start bleeding out of my mouth from tongue biting, my neck muscles tighten to the point where my lips draw back unnaturally exposing my teeth. Shaking followed by ridgedness. Often, after the generalized seizure I have long lasting anterograde amnesia (inability to form new memories) essentially I become a "husk". I walk, speak, and function normally for hours but have no memory of these events. Things do still seem out of place to observers such as, remaining extremely tired and demanding that I be allowed to sleep, or that I just "dont seem like myself." Apparently the signs are strong enough that if they havent called an ambulance during the seizure, theyre calling it now. Then, suddenly I come back to full awareness because my brain is able to form new memories again. It feels like teleportation, from the moment my partial seizure reaches its peak to now, I have no memories, suddenly im somewhere else and dont know how I got there.
This doesnt represent everything in terms of what it feels like, but it does represent everything I able to describe in words. Sometimes I try to explain using references to specific movie clips, book passages, or video game cutscenes. Think "the matrix", "hellraiser", "Donnie Darko", "Event Horizon", "Mass Effect". The closest analogy actually comes from a passage in a book by Clive Barker called "The Hellbound Heart" where extradimentional beings arrive at the behest of a too-curious human to provide a form of sadomasochistic "sensory experience" to the summoner that ends up being torturous rather than pleasurable. They force him to "dream" first before taking him away for eternity.
As soon as I went on medication at age 18 all my symptoms disappeared immediately. I was very grateful for this at the time, many epileptics have to suffer through medications being ineffective. Symptoms eventually started returning after they tried taking me off medication 10 years later. Again, im still grateful, because I'm only occasionally left with a focal aware seizure once a week or so.
Despite being virtually seizure free now, the point at which it started in my life, combined with the frequency of occurrences, along with the longevity of the illness without the treatment damaged me across many aspects of my life. Listed below:
my short-term memory is noticeably impaired by both me and my neurologists. This doesn't affect my intellect/IQ (which is good), but it does affect my ability to convert new information into long term memory. Like having a difficult time being told a short sequence of numbers and being expected to remember it 5 minutes later. Or "zoning out" during a conversation and not remembering something that was just said to me a moment ago. This is very manageable though, I've learned to just politely ask the person talking to me to repeat what they said since "im slightly hard of hearing". On the off chance I dont pick up on it the second time, I nod as if I got it and pray that forgetting it doesnt bite me in the ass later.
Major Depressive Disorder is a very common co-morbidity associated with Temporal Lobe Epilepsy. If I remember correctly, up to around 30% of epileptics develop crippling depression compared to 7-8% of the general population. This is by far the worst lasting effect that I have. I won't get into too much detail here, but without an extensive course of medications, regular medical support, and hefty medical bills I become non-functional. Even on the most effective cocktail I truly lack the ability to feel emotions such as joy or pleasure. I'm convinced the seizures have permanently damaged my capacity to feel "ok".
Career derailments: lost my ability to serve in the military after the diagnosis. Was discharged shortly into a planned career in the Air Force and had to change my career goals at a young age. Ive also had points in life where ive been unable to work due to my health, which is inconvenient to say the least. Luckily im good enough at what I do to be lucky enough to have a good career.
Socially stunted (in childhood/teens): i don't know anything about child development, but i can only assume that almost completely withdrawing socially starting at the age of 14 and only ending it at the age of 18 can't be a good thing. Needless to say, I had a lot of issues learning how to socialize effectively with people for a long time. Luckily I did a lot of adventuring/international traveling/dating starting in my early 20s so I was able to fully "catch up" to my peers..... though I still have my very occational "autism" moments.
So, overall, there isnt really a "happy ending" for anyone with epilepsy, some (like me) are nearly seizure free when medicated and I'm grateful for that everyday honestly! And while there's lasting challenges I still deal with I mostly get to lead a normal life.
And while I'm most thankful that I don't experience literal torture everytime I have a seizure, when I do get that occational focal aware "buzzing" it does make me wonder sometimes.... will these fictional "cenobites" come for me again? And if they do what will they force me to "dream" next time? And what if this time I can't escape them?
​
No idea why i chose to write this now after over 20 years of being an epileptic. Guess I'm remembering a lot of the past recently. Anyone have similar experiences?
TL;DR
I mainly have seizures where you become impaired but retain your awareness. They range from small sensations, ear ringing to loss of ability to speak or understand language, feelings of intense fear (gun pointed at your head fear) along with feelings as if the world around you is artificial, and feelings as if something is coming for you.
Yes, sometimes these evolve into generalized seizures (convulsions, memory loss, tongue biting, etc.)
Listed symptoms are not all inclusive, I still can't fully verbalize it. Movie/book/video game references sometimes help with that (The Matrix, Hellraiser, Mass Effect (specifically the beacon cutscenes))
Still have long lasting problems from all the seizures over the years.
I was diagnosed as having focal impaired awareness seizures with secondary generalized seizures due to epilepsy(formerly known as complex partial seizure disorder) when I was 18. The symptoms, however, began at around 14.
Multiple EEGs and the nature of my symptoms described below led doctors to the conclusion that the neural misfiring was happening in my left temporal lobe (which is responsible for language comprehension, verbal memory, and processing auditory information).
When I have a seizure I am still conscious. My symptoms are incredibly difficult to explain (which in of itself is a common symptom). I'll explain as best as I can below:
When I have focal aware seizures: I remain fully concious the whole time. It always begins with a ringing in my right ear that sounds like a combination of a heartbeat and a zipper being zipped very fast which lasts for less than a second. This may not seem like a big deal, but it is extremely loud and would happen up to 50-100 times a day. It disrupted sleep, caused distress, and I began withdrawing socially. From ages 14-15 this was the only symptom I delt with.
I'll explain this in bullet form since there are clear "steps of severity":
Always begins with focal aware symptoms. Add on tingling/numbness on the right side of my neck that would sometimes go into my extremities which would "beat" in sync with my pulsatile tinnitus (the sounds) in my right ear.
Same as previous point. Add on "electrical zapping" to the sound in my right ear.
Same as previous points. This is where things start to get scary. Add on feelings of dread and fear. Feeling that the sounds were becoming too loud and "painful". Sounds becing to distort and "worbble" My hand would often go up and hold onto my right temple and if people were around me, they would say I let out a quiet steady-pitched moan.
Same as previous points. The feelings of dread and fear turn into unadulterated panic. Imagine a cocked gun being pointed at your head. My body would shake slightly. Sounds in ear would evolve into something that sounded like a deep morbid tolling bell mixed with sounds that you might hear in a crowded room. Reality seems "artificial" along with feelings as if everything around me is "new". my thoughts would run with "why is this happening to me", "is this real", "am I dying". Loose the ability to speak, words that people are saying sound like gibberish
Same as previous points. Full on "cosmic horror". This has only happened to me once thankfully, and unlike the previous points lasted about 2-3 minutes instead of 30 seconds to 1 minute. Everything in the previous points (overwhelming already). Legs feel weak, i crawl on all fours. Horrible sensation that I'm being watched by something or someone. The sounds in my ear manifest into what sounds like a voice with a high pitched "angelic" tone thats spoke once. (No, not psychosis, though i was afraid it was at the time). As fast as it starts, it disappears. All the intensity disappears in a flash. I still feel confused but the sounds, tactile sensations, voice, fear, ability to speak, ability to speak, feelings of derealization, return in a flash. The confusion disappears after about 10 minutes.
See point #4 above, it always starts with a focal impaired awareness seizure. If people are around me they say I look like I'm in extreme pain and moaning loudly. I "blip out" complete unconscious nothingness. People say that I start bleeding out of my mouth from tongue biting, my neck muscles tighten to the point where my lips draw back unnaturally exposing my teeth. Shaking followed by ridgedness. Often, after the generalized seizure I have long lasting anterograde amnesia (inability to form new memories) essentially I become a "husk". I walk, speak, and function normally for hours but have no memory of these events. Things do still seem out of place to observers such as remaining extremely tired and demand that I be allowed to sleep and that I just dont seem lkke myself. Apparently the signs are strong enough that if they havent called an ambulance during the seizure, theyre calling it now. Then, suddenly I come back to full awareness because my brain is able to form new memories again. It feels like teleportation, from the moment my partial seizure reaches its peak to now, I have no memories, suddenly im somewhere else and dont know how I got there.
This doesnt represent everything in terms of what it feels like, but it does represent everything I able to describe in words. Sometimes I try to explain using references to specific movie clips, book passages, or video game cutscenes. Think "the matrix", "the hellbound heart" the book that let to the "hellraiser" movies, the "mass effect" beacon sequences, etc.
Would write more since I still have lasting effects from all the seizures, but Ive been writing for a while now. Here if you have questions!