I have been on a hunt to understand my seizures and to get control of them since coming here in May, 2008. I have been in contact with Meetz who suggested that this post be made here. If it needs to be moved, please do so.
This serves to document my neurological journey up to this point. I hope to possibly find someone here who has had a similar journey. The early years are largely anecdotal as there is no one left living who would remember any events. What sent me on this exploration was my frustration with my seizures and a growing realization that my brother, now deceased, had all the classic signs of autism. As I became aware of the meaning of his behavior, I increasingly had the feeling that I myself had only been steps away from autism during my childhood years.
I was raised by my grandmother. She told me of my being an infant unable to sleep without her hand touching me all night long. She moved my crib next to her bed; if her hand moved, I would scream inconsolably. I grew up a distant child, a touch-me-not. No hugs, no kisses, no affection given or received. I looked at no one and at nothing. My grandmother worked with me on my homework and would quiz me relentlessly for tests. She did that until I left home upon college graduation. She told me that the reason that I had "trouble" was because I had been a forceps baby. She never elaborated on the nature of my "trouble", how it was diagnosed, or what any doctor had told her of it. She made it her business for me to be scholastically successful and I was.
On my own, I functioned normally or so I thought. I became increasingly aware of a problem with sensory overload, something I had experienced all my life. My senses were jacked up, running at full throttle, nothing was filtered out. The following is a portion of a poem I've written about how it felt to be me at that time:
Every note of every sound heard
Every detail keenly seen
Every odor an intense invasion of my nostrils
Individual flavors sorted on my palate
Nothing dismissed as inconsequential
Startling stains on my brain.
Mind and body
Raped ruthlessly by
A brain operating without filters,
Cataloging and memorizing everything
Each time my senses are used.
My conscious mind screams
"Enough!! Too much!!"
As my brain dutifully marches on.
An act of self-preservation
I swath myself in a sensory cocoon
My brush with every thing in my small world cursory.
I really want to examine closely
Enjoy the visual world set before me
But the wealth of detail and color creates images
Beyond what my mind can process.
In my early 20's, I had my first seizures that I was aware of. The first one consisted of passing out in the middle of a parking lot aisle; apparently I was lucky I didn't get run over. At first, the seizures were infrequent, but I would come to after passing out in public places. The older I got, the seizures became more frequent until in 1997, they took over my life.
In 1997 as well, I started therapy for Dissociative Identity Disorder. As I became integrated as a whole person mentally, my seizures worsened. Six years later, in 2002, my therapy was completed. I had been identified by that time as having pseudoseizures, brought on by early childhood sexual abuse and the resulting multiple personality disorder. I was put, first on one psychiatric drug, and then another to control uncontrollable seizures. In 2006, I developed tardive kinesis and was removed from all medication.
In May of 2008, having auras from the time I got up until I went to bed, I found CWE. I researched and went on the GARD. My seizures improved to the point that I had only one every week or so, instead of several a day. But in the summer of 2009, I started having sensory hallucinations which I now believe are simple partial seizures. If I have them back-to-back, they are brutal. The seizures due to food triggers have decreased, but I am left with these new seizures, the likes of which I don't remember ever having.
It was at this time that I recalled my sensory overload problems. I went on a hunt, and discovered a neurological problem called Sensory Processing Disorder. As I read the adult checklist of symptoms, I knew that I had more than likely found the rhyme and reason for all the sensory problems I'd experienced all my life.
My question now becomes this: Did seizures create the sensory processing problems, or did the sensory processing problems lead to the seizures? I am convinced they are related. This question becomes the next chapter in my journey to self-awareness.
This serves to document my neurological journey up to this point. I hope to possibly find someone here who has had a similar journey. The early years are largely anecdotal as there is no one left living who would remember any events. What sent me on this exploration was my frustration with my seizures and a growing realization that my brother, now deceased, had all the classic signs of autism. As I became aware of the meaning of his behavior, I increasingly had the feeling that I myself had only been steps away from autism during my childhood years.
I was raised by my grandmother. She told me of my being an infant unable to sleep without her hand touching me all night long. She moved my crib next to her bed; if her hand moved, I would scream inconsolably. I grew up a distant child, a touch-me-not. No hugs, no kisses, no affection given or received. I looked at no one and at nothing. My grandmother worked with me on my homework and would quiz me relentlessly for tests. She did that until I left home upon college graduation. She told me that the reason that I had "trouble" was because I had been a forceps baby. She never elaborated on the nature of my "trouble", how it was diagnosed, or what any doctor had told her of it. She made it her business for me to be scholastically successful and I was.
On my own, I functioned normally or so I thought. I became increasingly aware of a problem with sensory overload, something I had experienced all my life. My senses were jacked up, running at full throttle, nothing was filtered out. The following is a portion of a poem I've written about how it felt to be me at that time:
Every note of every sound heard
Every detail keenly seen
Every odor an intense invasion of my nostrils
Individual flavors sorted on my palate
Nothing dismissed as inconsequential
Startling stains on my brain.
Mind and body
Raped ruthlessly by
A brain operating without filters,
Cataloging and memorizing everything
Each time my senses are used.
My conscious mind screams
"Enough!! Too much!!"
As my brain dutifully marches on.
An act of self-preservation
I swath myself in a sensory cocoon
My brush with every thing in my small world cursory.
I really want to examine closely
Enjoy the visual world set before me
But the wealth of detail and color creates images
Beyond what my mind can process.
In my early 20's, I had my first seizures that I was aware of. The first one consisted of passing out in the middle of a parking lot aisle; apparently I was lucky I didn't get run over. At first, the seizures were infrequent, but I would come to after passing out in public places. The older I got, the seizures became more frequent until in 1997, they took over my life.
In 1997 as well, I started therapy for Dissociative Identity Disorder. As I became integrated as a whole person mentally, my seizures worsened. Six years later, in 2002, my therapy was completed. I had been identified by that time as having pseudoseizures, brought on by early childhood sexual abuse and the resulting multiple personality disorder. I was put, first on one psychiatric drug, and then another to control uncontrollable seizures. In 2006, I developed tardive kinesis and was removed from all medication.
In May of 2008, having auras from the time I got up until I went to bed, I found CWE. I researched and went on the GARD. My seizures improved to the point that I had only one every week or so, instead of several a day. But in the summer of 2009, I started having sensory hallucinations which I now believe are simple partial seizures. If I have them back-to-back, they are brutal. The seizures due to food triggers have decreased, but I am left with these new seizures, the likes of which I don't remember ever having.
It was at this time that I recalled my sensory overload problems. I went on a hunt, and discovered a neurological problem called Sensory Processing Disorder. As I read the adult checklist of symptoms, I knew that I had more than likely found the rhyme and reason for all the sensory problems I'd experienced all my life.
My question now becomes this: Did seizures create the sensory processing problems, or did the sensory processing problems lead to the seizures? I am convinced they are related. This question becomes the next chapter in my journey to self-awareness.
