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Hi - I'm Brain, aka Sharon, Southie, Head Storms - a Florida Native. My birth was preplanned for adoption. I suffer from Progressive Epilepsy and Neurological Issues; which are genetic & DNA - inherited trait. I also suffer from cardiac issues as well.
(NOT IN GENERALIZED SPECIFIC ORDER)
While my seizures are nocturnal; I don't have any memory of it
as it goes during my sleep, but it's recorded on the
EEG and vEEG, but when I wake up: I feel drained, like
I've been beaten up by a gang of baseball bats, or I would
have bruises, banged up, or even found in weird positions
(like half on the bed and on the floor), and not be aware
of it. And I do not feel rested at all and often I have the
need to go back to sleep. It's really strange. I slept all
night, but need to sleep?
But when I was younger, I had Petit Mals (Absence) only
they didn't know that; and they thought I was 'daydreaming' and I would get in trouble in class for not paying attention. Then the Atonics (Drop Attacks) <note: I don't have those anymore> and they just happened without a warning; and it often got me kicked off the Leagues / Teams, as I was very active in sports. But no one knew why I was 'falling down and had a hard time getting up or a delay of getting up' and would be in a daze or confused for a moment. My parents used to call me a "Klutz". But of course my area was very rural back then. But there were many other things added on top of this, such as uncontrolled laughing, kaleidoscopic lights, and much more. (Many which I learned later were Reflex seizures and Gelastic Seizures to which I still suffer from it)
Strangely I was undergoing EEG, Neuropsych, Speech, Language, Memory, and all kinds of Therapy of all sorts. I had been taken to a major Hospital (which would be considered Level 4 in that Era). They weren't sure at first what it was, as they called it first Progressive Nerve Damage with very mild hearing loss, then Progressive Nerve Damage with very mild hearing loss with hyperactiveness. Then they upgraded it to Progressive Nerve Damage, Progressive Epilepsy, with very mile hearing loss with hyperactiveness. But I was never treated with any medication for it. Just therapy. They knew it was from birth, and it was genetic - but couldn't pinpoint the specific. Even today, they were almost Bulls-Eye for that Time and Era (considering I'm 45 years old now) and I've see the progress of Neurology and Neuroscience and have had my fill of Neuro-land.
I didn't know what an aura was, I didn't know what "normal" was. All of these things were "normal" to me. So whenever the Doctors would ask me questions, I would be bewildered, because I wouldn't know what to respond or say. Especially when they say "What wasn't normal or abnormal"
I mean - "How was I supposed to know what was not normal or abnormal?" Everything to me was normal. I've lived it all in my life. I thought everyone went through it.
I didn't know anyone who had seizures, neurological problems like I did, except for a couple people - one who had Tourette's, and later on in school who had Tics. But they were normal. But they never went through all this that I did. This is one thing I never understood in my entire school life.
Even when being an adult, still didn't know anyone who had Seizures or Epilepsy - while early in marriage, this area was starting to get out of being rural, but later on, now is a metro, but even now, I don't know anyone who has Epilepsy or Seizures, but I've heard of people talk about their friend or family member who has it; but I've yet to meet anyone.
Epilepsy is Scary!! It's very strange!
While no one would tell me what it was, I've had to do research on my own on the internet; while at first was very vague and sporadic, but as the time and years rolled on, more information came along, and I began to relate and understand and say, "HEY! That's me and what I was going through!"
The hardest thing to swallow is having a Neurologists and Epileptologists telling you that you're Intractable.
I hate hearing it. While true I've gone through periods of being seizure-free spans for a long time, but it was only a matter of time before:
1) body would develop tolerance to the medication(s) or combination
2) allergic or reaction to medication(s)
3) the whole thing would just collapse
And the Electrographic Seizure - which would cause me to become non-responsive, it used to be sporadic and very isolated, but for some reason since 2005, it's been making a come back. Why? I don't know. BUT IT IS VERY DANGEROUS - Read the second Link Below:
Electrographic Seizure
Electrocardiographic changes during electrographic seizures
While it's documented so far as:
Intractable Complex Partial Epilepsy with or without loss of consciousness
Tonic Clonic (Grand Mal)
Electrographic
Absence (Petit Mal)
Simple Partial
All which can secondary generalize - even the Tonic Clonic can generalize into another type of a seizure.
I can go SE (Status Epilepticus) or Back-to-Back (not clustering) or overlapping with multiple types of seizures.
I seem to frustrate Neurologists and Epileptologists. I've been dropped or sent to someone else by many because of the risk-factor or liability. I'm not a typical "textbook case" or "too complex" or "complicated case" as they tell me.
But at least Shands Hospital way back in the 60s was nearly Bulls-Eye in one part - it was Progressive, and they were Bulls-Eye on the other part; it will eventually take my life - either to coma or death unless something unfortunate happened that ended my life sooner. My Pediatrician and I had a talk when I was 15 on his mother-in-law's ranch, again so he made sure I understood everything. This is why it's no surprise to my mother or myself. It's been expected all along. The question was - WHEN it would happen, which no one was able t o answer.
My current status I've been informed is Extremely High Risk & Life Threatening. And I am not thrilled about hearing that part either.
(NOT IN GENERALIZED SPECIFIC ORDER)
While my seizures are nocturnal; I don't have any memory of it
as it goes during my sleep, but it's recorded on the
EEG and vEEG, but when I wake up: I feel drained, like
I've been beaten up by a gang of baseball bats, or I would
have bruises, banged up, or even found in weird positions
(like half on the bed and on the floor), and not be aware
of it. And I do not feel rested at all and often I have the
need to go back to sleep. It's really strange. I slept all
night, but need to sleep?
But when I was younger, I had Petit Mals (Absence) only
they didn't know that; and they thought I was 'daydreaming' and I would get in trouble in class for not paying attention. Then the Atonics (Drop Attacks) <note: I don't have those anymore> and they just happened without a warning; and it often got me kicked off the Leagues / Teams, as I was very active in sports. But no one knew why I was 'falling down and had a hard time getting up or a delay of getting up' and would be in a daze or confused for a moment. My parents used to call me a "Klutz". But of course my area was very rural back then. But there were many other things added on top of this, such as uncontrolled laughing, kaleidoscopic lights, and much more. (Many which I learned later were Reflex seizures and Gelastic Seizures to which I still suffer from it)
Strangely I was undergoing EEG, Neuropsych, Speech, Language, Memory, and all kinds of Therapy of all sorts. I had been taken to a major Hospital (which would be considered Level 4 in that Era). They weren't sure at first what it was, as they called it first Progressive Nerve Damage with very mild hearing loss, then Progressive Nerve Damage with very mild hearing loss with hyperactiveness. Then they upgraded it to Progressive Nerve Damage, Progressive Epilepsy, with very mile hearing loss with hyperactiveness. But I was never treated with any medication for it. Just therapy. They knew it was from birth, and it was genetic - but couldn't pinpoint the specific. Even today, they were almost Bulls-Eye for that Time and Era (considering I'm 45 years old now) and I've see the progress of Neurology and Neuroscience and have had my fill of Neuro-land.
I didn't know what an aura was, I didn't know what "normal" was. All of these things were "normal" to me. So whenever the Doctors would ask me questions, I would be bewildered, because I wouldn't know what to respond or say. Especially when they say "What wasn't normal or abnormal"
I mean - "How was I supposed to know what was not normal or abnormal?" Everything to me was normal. I've lived it all in my life. I thought everyone went through it.
I didn't know anyone who had seizures, neurological problems like I did, except for a couple people - one who had Tourette's, and later on in school who had Tics. But they were normal. But they never went through all this that I did. This is one thing I never understood in my entire school life.
Even when being an adult, still didn't know anyone who had Seizures or Epilepsy - while early in marriage, this area was starting to get out of being rural, but later on, now is a metro, but even now, I don't know anyone who has Epilepsy or Seizures, but I've heard of people talk about their friend or family member who has it; but I've yet to meet anyone.
Epilepsy is Scary!! It's very strange!
While no one would tell me what it was, I've had to do research on my own on the internet; while at first was very vague and sporadic, but as the time and years rolled on, more information came along, and I began to relate and understand and say, "HEY! That's me and what I was going through!"
The hardest thing to swallow is having a Neurologists and Epileptologists telling you that you're Intractable.
I hate hearing it. While true I've gone through periods of being seizure-free spans for a long time, but it was only a matter of time before:
1) body would develop tolerance to the medication(s) or combination
2) allergic or reaction to medication(s)
3) the whole thing would just collapse
And the Electrographic Seizure - which would cause me to become non-responsive, it used to be sporadic and very isolated, but for some reason since 2005, it's been making a come back. Why? I don't know. BUT IT IS VERY DANGEROUS - Read the second Link Below:
Electrographic Seizure
Electrocardiographic changes during electrographic seizures
While it's documented so far as:
Intractable Complex Partial Epilepsy with or without loss of consciousness
Tonic Clonic (Grand Mal)
Electrographic
Absence (Petit Mal)
Simple Partial
All which can secondary generalize - even the Tonic Clonic can generalize into another type of a seizure.
I can go SE (Status Epilepticus) or Back-to-Back (not clustering) or overlapping with multiple types of seizures.
I seem to frustrate Neurologists and Epileptologists. I've been dropped or sent to someone else by many because of the risk-factor or liability. I'm not a typical "textbook case" or "too complex" or "complicated case" as they tell me.
But at least Shands Hospital way back in the 60s was nearly Bulls-Eye in one part - it was Progressive, and they were Bulls-Eye on the other part; it will eventually take my life - either to coma or death unless something unfortunate happened that ended my life sooner. My Pediatrician and I had a talk when I was 15 on his mother-in-law's ranch, again so he made sure I understood everything. This is why it's no surprise to my mother or myself. It's been expected all along. The question was - WHEN it would happen, which no one was able t o answer.
My current status I've been informed is Extremely High Risk & Life Threatening. And I am not thrilled about hearing that part either.
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Boy you said a mouthful and you have your work cut out for you. It's really amazing how different epilepsy is for everyone and how much it varies from one person to the next.
