Between 1970 and 1973 (5 to 8 years old) I had about 15 to 20 seizures. The seizures usually happened just after I woke up, or while I was in bed awake. They did not happen while physically or mentally active, or when I was asleep. I could feel the onset of a seizure in my mouth: much saliva and typical taste. The seizure itself was a physical shivering and a very scary altered awareness. It lasted maybe 10 seconds.
Recently I went through my medical files and looked up the EEG reports. The first is from 1971, when I was 6 years old, the last is from 1983, when 17 years old. There are 13 EEGs in total.
The very first EEG report states: “infrequent bilateral paroxysmal disturbances; some right-temporal sharp waves ”. Nothing was said about epilepsy or epileptic features. In 1972 and 1973 there are 4 more EEGs. In the 1973 reports the explicit statement of “no epileptic characteristics” is made twice. The only irregularities observed are “light dis-rhythm”, and “paroxysmal disturbances when hyperventilating”.
The 1972-73 EEGs were at the height of my seizures. I was being medicated with Diphantoin at the time. This did not go down well. I developed an abscess in a gland of my neck. The abscess was removed via surgery and the medication was aborted.
A few months later, in November 1973, I was in hospital for observation during 3 weeks. No seizures occurred, until the very last night when I had a seizure, just before going home again. At that time the doctor realized my case might have a mental aspect, so he got a psychologist to do tests with me and talk with my parents. The psychologist’s report states that he didn’t see any indications of an organic-cerebral disability. However, he questions my upbringing and suspects something is not right.
Well he sure was right about that. My mother was a very violent, mentally and physically abuse person. My father didn’t concern himself with children, and basically backed up my mother. My brother is 7 years younger, so I have consciously witnessed how he was slapped in the face daily for years, from about 3 or 4 years old. I can’t remember if it was as bad with me when I was his age, but it was certainly not good. So this psychologist put a question-mark next to my parents, and talked to them. I remember how furious my parents came back from that talk. “That psychologist is an arrogant bastard and we are never going to see him again”, according to my parents. I can’t recall ever having seen this psychologist again myself.
Good thing is that from then on, I can’t remember being slapped anymore. I was 8 years old by then. Also, around this time I discovered that I could suppress an upcoming seizure by means of mental activity, like singing, or strongly focusing the mind. Basically anything but relaxation. I decided to make it a habit to be singing (in my mind), or thinking all day long, and not to fall into a relaxed state of mind for a single moment. After some time I did it automatically, subconsciously, all day long. It became a radio in my head, switched on all the time, no matter what. Forcing the mind to be active all the time was very hard and it took a lot of will power (or fear), but it seemed to work. It became a subconscious, automatic habit. I can’t remember any more seizures after being released from that hospital in 1973.
About a year later, in December 1974, I had an EEG taken again. The report from this EEG states that there had not been any more seizures since the last EEG 6 months earlier (I suppose I informed them so at the time). Also, for the first time since the EEGs started in 1971, the report states “Focal epileptic disturbances”…
So all of a sudden, a year after my last seizure, there appear to be focal epileptic disturbances, while at the time I really suffered from seizures, nothing in the way of epilepsy was detected!
In the subsequent 5 EEGs from 1975 to 1978, no epileptic characteristics were found. In 1983 I have a final EEG, related to a job interview. Again, nothing is seen in the way of epilepsy, but the reports notes “a very irregular overall picture”, “a mild functional disturbance on a cortical level”, and “alpha- and mu-rhythm are mediocre, with a little too much beta-activity”. What flabbergasted me in two reports ( 1976 and 1978 ), is that the doctor had consultations by phone with my mother and she stated that I still had seizures from time to time. A blatant lie. I suppose she tried to cover up the fact that the seizures stopped right after her physical abuse stopped.
In 2001, at age 36, a therapist explained to me that the underlying cause for the seizures in my youth might not be the relaxation, but my frequent thoughts at the time about ‘not wanting to live’ or ‘being born in a different family’, due to the problems with my mother. This seems to hit a nerve with me. Almost overnight, for the first time in more than a quarter century, I am able to sleep well and wake up rested. Apparently my fears for early morning seizures have subsided. But deep down, I am not convinced, because I keep talking to myself all the time. I just can’t stop it. This is one of my questions that I can’t seem to answer: How to stop this obsessive thinking/talking?
The other things that still puzzle me:
- Did I have epilepsy, was it PNES, or something else?
- What causes seizures to occur just after waking up?
- Are there people who have had similar altered awareness experiences or hallucinations that are really scary, as if staring into the here-after, but a very ugly here-after?
I wish I could convince myself some day that nothing is wrong with me anymore.
Recently I went through my medical files and looked up the EEG reports. The first is from 1971, when I was 6 years old, the last is from 1983, when 17 years old. There are 13 EEGs in total.
The very first EEG report states: “infrequent bilateral paroxysmal disturbances; some right-temporal sharp waves ”. Nothing was said about epilepsy or epileptic features. In 1972 and 1973 there are 4 more EEGs. In the 1973 reports the explicit statement of “no epileptic characteristics” is made twice. The only irregularities observed are “light dis-rhythm”, and “paroxysmal disturbances when hyperventilating”.
The 1972-73 EEGs were at the height of my seizures. I was being medicated with Diphantoin at the time. This did not go down well. I developed an abscess in a gland of my neck. The abscess was removed via surgery and the medication was aborted.
A few months later, in November 1973, I was in hospital for observation during 3 weeks. No seizures occurred, until the very last night when I had a seizure, just before going home again. At that time the doctor realized my case might have a mental aspect, so he got a psychologist to do tests with me and talk with my parents. The psychologist’s report states that he didn’t see any indications of an organic-cerebral disability. However, he questions my upbringing and suspects something is not right.
Well he sure was right about that. My mother was a very violent, mentally and physically abuse person. My father didn’t concern himself with children, and basically backed up my mother. My brother is 7 years younger, so I have consciously witnessed how he was slapped in the face daily for years, from about 3 or 4 years old. I can’t remember if it was as bad with me when I was his age, but it was certainly not good. So this psychologist put a question-mark next to my parents, and talked to them. I remember how furious my parents came back from that talk. “That psychologist is an arrogant bastard and we are never going to see him again”, according to my parents. I can’t recall ever having seen this psychologist again myself.
Good thing is that from then on, I can’t remember being slapped anymore. I was 8 years old by then. Also, around this time I discovered that I could suppress an upcoming seizure by means of mental activity, like singing, or strongly focusing the mind. Basically anything but relaxation. I decided to make it a habit to be singing (in my mind), or thinking all day long, and not to fall into a relaxed state of mind for a single moment. After some time I did it automatically, subconsciously, all day long. It became a radio in my head, switched on all the time, no matter what. Forcing the mind to be active all the time was very hard and it took a lot of will power (or fear), but it seemed to work. It became a subconscious, automatic habit. I can’t remember any more seizures after being released from that hospital in 1973.
About a year later, in December 1974, I had an EEG taken again. The report from this EEG states that there had not been any more seizures since the last EEG 6 months earlier (I suppose I informed them so at the time). Also, for the first time since the EEGs started in 1971, the report states “Focal epileptic disturbances”…
So all of a sudden, a year after my last seizure, there appear to be focal epileptic disturbances, while at the time I really suffered from seizures, nothing in the way of epilepsy was detected!
In the subsequent 5 EEGs from 1975 to 1978, no epileptic characteristics were found. In 1983 I have a final EEG, related to a job interview. Again, nothing is seen in the way of epilepsy, but the reports notes “a very irregular overall picture”, “a mild functional disturbance on a cortical level”, and “alpha- and mu-rhythm are mediocre, with a little too much beta-activity”. What flabbergasted me in two reports ( 1976 and 1978 ), is that the doctor had consultations by phone with my mother and she stated that I still had seizures from time to time. A blatant lie. I suppose she tried to cover up the fact that the seizures stopped right after her physical abuse stopped.
In 2001, at age 36, a therapist explained to me that the underlying cause for the seizures in my youth might not be the relaxation, but my frequent thoughts at the time about ‘not wanting to live’ or ‘being born in a different family’, due to the problems with my mother. This seems to hit a nerve with me. Almost overnight, for the first time in more than a quarter century, I am able to sleep well and wake up rested. Apparently my fears for early morning seizures have subsided. But deep down, I am not convinced, because I keep talking to myself all the time. I just can’t stop it. This is one of my questions that I can’t seem to answer: How to stop this obsessive thinking/talking?
The other things that still puzzle me:
- Did I have epilepsy, was it PNES, or something else?
- What causes seizures to occur just after waking up?
- Are there people who have had similar altered awareness experiences or hallucinations that are really scary, as if staring into the here-after, but a very ugly here-after?
I wish I could convince myself some day that nothing is wrong with me anymore.
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