Dann (absolutedann) wrote,
Dann
absolutedann

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Epilepsy...

In November I requested an emergency appointment to see my neurologist, and was granted one in early December, but had to cancel due to work commitments. The appointment has been rescheduled to the end of January, and I have booked some annual leave days to go to what will be my final visit to this particular doctor. As such I have decided to document the symptoms I have been experiencing since my return from Final Adelaide 2011, and chart common symptoms for my next doctor's evaluation.

Throughout my life, I experienced debilitating headaches that saw me having to stagger out of classrooms to vomit during the school day. Little was thought of this until the night before a casual-dress day when I was in year eight. On that night, I was discovered in the midst of a seizure, and my dad took me to hospital. Not much came of this, but it did lead to a referral to Dr Lindsay Smith, the hospital's resident paediatric neurologist. Although I have heard conflicting reports of his abilities, I could not fault him, so remained a patient until I was 21 and could no longer remain on his paediatric roster. After that initial visit, he sent me for an EEG, which he noted in subsequent visits 'wasn't very exciting,' and MRI, which revealed not less than three scars along my temporal lobe. This was more interesting, and a likely cause of the seizure. He also ordered what he referred to a Sleep Deprived EEG, since the seizure which had been witnessed had taken place whilst I was asleep. This showed more abnormal brain activity than the initial EEG, but was still nothing notable.

With the new context given to my lifetime of headaches, I was able to form links between things. I noted that the worst kind of these headaches - the kind that had, for the course of my life, left me occasionally in such pain that I was unable to move for a whole day - coincided with the seizure, and, as I experienced a couple more, I was able to confirm this. Dr Lindsay also raised the question of whether I experienced any kind of hallucination, and at the time I didn't think I did, but I have since realised that I have and still do. They aren't hallucinations like in the movies. I don't see things like The Green Fairy or lizard people in lounge-bars. Instead, they are more like uneasy feelings or suspicions. I sometimes feel distant from things, like everything is far away from me, and moving around me as a central point. Any kind of movement I make during this sensation feels somehow grander and more elaborate than it really is. In a more typically epileptic hallucination, I see a pulsating globe of light at the periphery of my vision, frustratingly always just at a point where I am unable to focus on it. It is sometimes accompanied by a pounding bass beat in time with its pulses.

Also coinciding with seizures was a recurring dream which may or may not be classified as an hallucination. In the dream I found myself, unextraordinarily, in my own bed, however the bedroom was otherwise devoid of furniture, and had been converted into a perfectly spherical space. It is unclear how the bed managed to remain stable in a round room, but I doubt it is relevant. The walls were overlaid with a black and white chessboard pattern, in which the black squares seemed to pulse at the same rate as the aforementioned sphere of light. Featuring prominently in these dreams was Marvin the Martian, always desperate for my attention and casually concerned with some matter, however in recent times, though I still dream of the round black and white room, Marvin has been absent.

Perhaps it should also not be included in the same category as hallucinations, but I would, usually after a suspected seizure, experience heightened awareness of everything around me. During this period, until the time when I inevitably fall back to sleep, I can hear sounds as 'layered' and focus upon them, like turning the volume up and down on the individual tracks of a mixing deck. I can filter out background noise, like the hum of the refrigerator and birds outside, and clearly understand quiet conversations taking place in other rooms, or the house next door. My attention is also drawn specifically to certain objects which, for not obvious reason, emit an extreme reverence and importance. This increased awareness of everything has to be balance with the feeling of being distant from everything to ensure - if I do get up - that I don't trip over, and is usually coupled with an intense craving for vitamin C which has seen me consume litres of orange juice in a matter of minutes.

Since commencing a course of medication, these incidents have been restricted to around one or two 'episodes' (as some employer I had once referred to them) per year. I have been on a series of different kinds of medication which I won't detail, since I know that a satisfactory history of dates, dosages and reasons for discontinuation and toxicity reports exists in my medical records.

In the late afternoon of October 31, 2011, I decided to sleep for a while. I woke up at some point and didn't realise anything was wrong until I tried to get up and noticed a lack of balance and fell into my bar fridge. I didn't have any of the usual epileptic after-effects, like a crippling headache. Nevertheless, I went back to bed and hoped I would recover by some miracle. This was, to my knowledge, the first incident of its kind. In the subsequent nights (or other times I attempted sleep) the same thing happened, often several times during the night, and sometimes accompanied by a headache, and other assortments of the symptoms described above. Most troubling about this has been the fact that I have clearly been moving around, doing things logically and sensibly, however I have no memory of them. For example, one time I found a pool of drying blood on the carpet of my room, suggesting that I got up during the night, injured myself in some way (I have also been finding various cuts and bruises on my body, and especially knuckles) and then climbed back into bed. I have no memory of any of this. Another time, I woke to find an assortments of my shirts folded neatly and packed into my suitcase. At this point I made the December appointment, which was ultimately rescheduled for late in this month due to work commitments.

When I realised that this was happening every time I slept, I tried an experiment of restricting my sleep to short blocks, which seemed to stop anything untoward from happening, because I feared that this could be leading to a more major seizure, which would impact upon the busy eight weeks I had at work. So every time I slept, I set an alarm to ring every 45 minutes to wake me. For the most part, the experiment has been a success which continues to this day.

To my knowledge I have not had any seizure since commencing the experiment, however other side-effects similar to those I have experienced previously have crept into my waking life since late November. To begin, I would have the feeling of everything being distant from me variously throughout the day. It wasn't long until this became permanent. I have also become aware of the fact that there are blocks of time during the day which I cannot account for. So far, nothing dramatic appears to have happened during these times - as I wrote before, I seem to have behaved rationally - but I nevertheless became terrified when I discovered that I had no memory of driving along a certain stretch of road on my way to work one morning. There have been other examples of what my mother calls 'lost time' too, and they are of great concern to me.

I have read articles about how there is allegedly increased evidence of psychic ability amongst those with epilepsy. I have written about this, and my doubts previously. As stated, I don't believe I have any kind of psychic power. However, I have noted that since November, the heightened levels of perception that I experience after a seizure have become a permanent fixture. It has meant that it has been very easy for me to (for lack of a better term) filter out irrelevant sounds and focus only on what is of interest to me. I also discussed previously how hallucinations have been appearing before me, and seem to draw my attention to certain items which require my attention. I put this down to some kind of increased environmental sensitivity, and I suppose this assistance in focus, combined with the lack of interest in anything which I have developed, allows me to calculate, very efficiently, what is most likely to happen. When I have pointed this out I have been accused of being psychic, but it is just an unexpectedly useful symptom.

I wondered if allowing myself to have a regular seizure would perhaps stop all of these symptoms. Maybe they are caused by some kind of build-up of epileptic pressure somewhere within me, and could be alleviated, like a pressure-release, by allowing myself to have a classic seizure. Since I had New Years Day off work, I attempted to have a full night's sleep, but was woken at around the same rate as my alarm would by the sound of illegal fireworks, so I won't be able to present the results of my experiments to the doctor for forwarding to whomever he refers me to.
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