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The TLE phenomenon
by Teresa Sheppard

Over the years it has been pointed out that there are many natural ‘conditions’ of human beings that can give rise to apparent paranormal phenomena. The condition that gives rise to, arguably, some of the most compelling bizarre ‘experiences’ is temporal lobe epilepsy (TLE). It is a condition that every paranormal researcher should know something about in order to understand just what it can do. Here we read about the experiences, and background research, from someone who has first hand experience of the condition.

It is thus with regard to the disease called Sacred: it appears to me to be nowise more divine nor more sacred than other diseases, but has a natural cause from the originates like other affections. Men regard its nature and cause as divine from ignorance and wonder, because it is not at all like to other diseases. And this notion of its divinity is kept up by their inability to comprehend it.” Hippocrates, The Sacred Disease. 400 BC

A brief history of epilepsy

The word ‘epilepsy’ comes from the Greek word epilepsia, meaning to take hold or seize. It was indeed the Greeks who first documented the condition we now recognise as epilepsy. Possibly the earliest known published writing on epilepsy was that of Hippocrates in the fifth century BC, in his work The Sacred Disease. In ancient Greece it was known as the ‘falling sickness’, a description of generalised seizures. The discovery of ancient skulls which had been ‘trepanned’ is a possible indication of the acknowledgement of the disease since prehistory. (Trepanning was a method of medical or spiritual practice by ancient peoples whereby a small hole would be made in the skull). This would supposedly ‘release the demon within’, or at least relieve pressure caused by a tumour. It seems to be a fallacy that epileptics were often revered as shamans. There is more evidence to suggest that they were treated callously by people who didn't understand the condition, their visions and prophecies often regarded with suspicion.

Temporal Lobe Epilepsy (TLE) was first recognized as a disorder in the 1860s by John Hughlings Jackson, who had described his wife's ‘uncinate fits’ (a form of complex partial seizure initiated by a dreamy state and by various hallucinations). Hughlings Jackson eventually discovered from his autopsies of patients with epilepsy that the disorder was almost always due to a lesion or scarring on the brain and therefore identified that the seizure was due to a focal point in the brain, the seizure ‘focus’. He knew that the brain was composed of nerve cells which contributed to feelings, thoughts and actions by the production of electrical charges, or ‘firing’. He theorised that because of damage to these nerve cells, there could be occasional uncontrolled bursts of electrical activity which could precipitate an epileptic seizure. In 1873 Jackson's colleague, Sir David Ferrier, through his cortical stimulation studies of monkeys, confirmed Jackson's clinical observation that cerebral functions were localized to specific brain regions.

With the advent of the EEG (electroencephalogram) machine in 1929, more and more became known about the condition. The EEG electrodes, placed on different areas of the scalp, would transmit electrical activity through wires from that area to the graph pens, producing eight to sixteen wavy lines in response to brain activity. A seizure focus, present all the time, would show a rhythmic spike, sometimes alternating with a smoother wave – an indication of a rapid, synchronous change in electrical potential. This would show as a spike and wave. The seizures themselves would be characterized by jagged lines, a little like an earthquake showing on a seismograph.

In the 1940s the condition was known as psychomotor epilepsy. The international classification of epileptic seizures (1981) replaced the term ‘psychomotor seizures’ with ‘complex partial seizures’. The International League Against Epilepsy (ILAE) classification of the epilepsies was using the term ‘temporal lobe epilepsy’. The aetiologies were divided as cryptogenic (unidentified cause), idiopathic (genetic cause) and symptomatic (where the cause is organic and evident, eg. a tumour or lesion).

Complex and simple partial seizure disorders

Temporal Lobe Epilepsy (TLE) was defined in 1985 by the ILAE as a condition characterized by recurrent unprovoked seizures originating from the temporal lobe, including the Hippocampus (see box ‘Remember the seahorse - the Hippocampus’). The seizures associated with TLE consist of simple partial seizures without loss of awareness (with or without aura) and complex partial seizures (ie. with loss of awareness), previously known as ‘petit mal’. The individual loses awareness during a complex partial seizure because the abnormal electrical activity may spread to involve both temporal lobes, which causes impairment of memory. Complex partial seizures sometimes generalise, that is to say the whole of the brain becomes involved as the individual experiences involuntary limb movement and unconsciousness; this was known as ‘grand mal’ epilepsy, but these days is more generally known as a tonic-clonic seizure.

The brain is made up of three areas: the hindbrain, midbrain and forebrain. The most noticeable part of the brain is an area of the forebrain called the cerebral cortex or cerebrum. From the outside, the cerebrum looks as if it is folded, with peaks called gyri and valleys called sulci.

The cerebrum is made up of two halves, the right and left hemispheres, which are separated by a deep groove or crease and connected deeper in the brain by a structure called the corpus callosum. The two hemispheres have some functions that are the same, and some that are different, but it is generally thought that the left hemisphere of our brain controls the right side of our body, and the right hemisphere controls the left side of our body. Each hemisphere is made up of four lobes. These lobes are the frontal, temporal, parietal and occipital lobes and each lobe has a different range of functions.

Frontal lobe: As the name suggests, these are the front parts of the brain behind the forehead. The frontal lobes are involved in ‘voluntary movement’ (like walking up stairs) and conscious thought (thinking about having a cup of tea). They are also involved in learning, speech and the personality.

Temporal lobe: The temporal lobes are the areas located above the ears and toward the back of the head. The functions of these lobes include making memories and remembering, and emotions. They are also involved in speech, hearing and perception (how we see the world around us).

Parietal lobe: The parietal lobes are behind the frontal lobes. They control how we feel and understand sensations, how we judge spatial relationships (such as the distance between two objects) and our co-ordination. These lobes are also involved in reading, writing, and mathematic calculation. Some involuntary movements we make are also controlled here.

Occipital lobe: The occipital lobes are at the back of the brain, behind the parietal lobes. These lobes control our sense of sight as they receive information from our eyes and make sense of what we see around us.

Under the two hemispheres of the cerebrum is part of the brain called the cerebellum. The cerebellum helps to coordinate and organise all the other parts of the brain to make sure all areas are working together. It also has an important role in our movement, balance and posture (for example, helping us to stand upright when we walk). Under the cerebrum and cerebellum is the brain stem, which connects the brain to the spine. The brain stem has a vital role: it controls our breathing and heartbeat. Lying in the middle of the brain is part of the temporal lobe called the hippocampus, named for its resemblance in shape to a seahorse. This part of the brain is involved in learning, forming memories and spatial navigation, or, remembering how to get where it was you were going… (whether you remember why you were going there or not!)

The temporal lobe is the most epileptogenic region of the brain. Sufferers of TLE may go undiagnosed or misdiagnosed for years, for often there are no physiological symptoms, as with the generalised tonic-clonic seizure, and symptoms may resemble those of psychiatric illness such as schizophrenia. What may be interesting to students of the paranormal is that understanding TLE a little can help to illuminate the relationship between brain and mind which may be highlighted when an individual is experiencing what they presume to be external anomalous phenomena on a regular basis.

A difficult diagnosis

Epilepsy is still a very misunderstood condition generally; it is often assumed that the only sign of this disorder is the falling to the floor and thrashing of limbs, typically seen in the generalised tonic-clonic seizure. Since TLE doesn't necessarily involve an outward sign to the onlooker unless generalisation occurs, it has previously been understandably difficult to identify as an epileptic condition. Even where epilepsy was recognised as an illness, to suffer from it was, and still is in some cases, taboo, sufferers being shunned or treated to forms of torture which were meant to remedy their ‘possession’ by demons or gods. It wasn't until the nineteenth century, when the current thinking was beginning to dispense with this somewhat mediaeval view, that the pioneers of neurology were to offer an alternative explanation for behaviour which was in some cases considered violent, bizarre or, in the case of TLE specifically, mystical or ecstatic. Even today the symptoms of TLE may result in a misdiagnosis of psychosis, schizophrenia or bi-polar disorder, all of which have varying degrees of similar symptoms. Unfortunately for those who have been misdiagnosed, the anti-psychotic drugs used without anti-convulsants can lower the epileptic threshold and cause the sufferer's symptoms to worsen.

Seizure threshold

Recurring seizures are known as epilepsy, but under certain conditions anyone can experience one-off seizures, for a variety of reasons. Recurrent epilepsy is often due to a physical impairment of the brain, a lesion or tumour. Lesions or scar tissue may be formed from a previous serious head injury, toxic poisoning, a difficult birth with anoxia (lack of oxygen to the brain) or even a high fever during an illness such as meningitis or encephalitis. A non-recurrent one-off seizure may also be due to certain environmental factors, such as a weak complex electro-magnetic field or drug use.

A person's seizure threshold is their individual level of resistance to seizures. Everyone has a seizure threshold (ST) inherited from their parents and anyone can have a seizure if the circumstances are right. If a person has an inherited low ST they are more likely to start having seizures suddenly for no obvious reason. However, an external factor could be, in a person with a low ST for example, drinking too much alcohol. Not normally affecting a person with a normal or high threshold other than as drunkenness and a bad hangover, this could cause a person with a low ST to start having seizures. It would normally take something like a severe head injury for a person with a higher ST to suddenly start having seizures.

A beginning, a middle and an end

There are generally three distinct phases of a seizure which are not always present in all cases; these are the warning phase, popularly known as the ‘aura’, which is actually a simple partial seizure affecting only a small part of the brain. This is enough to cause symptoms but not enough to disrupt consciousness and occurs in approximately 80% of TLE seizures. The abnormal firing may just stop there at the seizure focus. If not, the ‘ictus’ or complex partial seizure itself may lead to a convulsion, involving the whole brain. This involves loss of awareness and memory because the electrical storm travels to involve both lobes and areas controlling memory and consciousness (bilateral hemispheric), even if it's only for a few seconds. When a convulsion follows a simple or complex partial seizure it is known as secondary generalisation. The postictal period is immediately afterward and may include aphasia (loss of speech or speech makes no sense), memory loss, confusion, headache and tiredness. The postictal symptoms and how long these last are important as an indicator of the extent of brain involvement.

There is also some evidence of interictal (between seizures) personality types in persons with the condition. Consider the personalities of famous TLE sufferers, for example, Vincent Van Gogh, Dostoevsky and Tennyson to name but a few. It is variously known as Dostoevsky's or Geschwind's Syndrome, and it was the neurologist Norman Geschwind who was one of the first to recognise the transformation of the personality brought about by TLE, in that for some it seemed to magnify or give rise to a preoccupation with religious or philosophical matters which in turn would stimulate creative activity such as writing or painting, often as a compulsion, and known as hypergraphia.

The effects of partial seizures can be quite dependent on the area of the brain in which they are active. For example, a partial seizure in areas involved in perception may cause a particular sensory experience (for example, an hallucination of a scent, music or flashes of light) whereas, when centred in the motor cortex, a partial seizure might cause movement in particular groups of muscles resulting in automatisms such as plucking at the clothes or gnashing the teeth. The epileptic may be beset by sudden half memories and visions, hearing voices, feeling great anxiety or pure joy, sometimes of a divine nature. Occasionally there may be disturbing episodes of automatism – for instance in the case of Van Gogh, who cut off part of his ear while suffering a complex partial seizure, something he wasn't aware of at the time.

In my own case, it was mostly simple partial and I could, by looking at my own particular experiences, narrow it down to the left temporal lobe, an area concerned with emotions and the perception of music, among other things, with some hippocampal involvement in that I would experience forgotten random memories and nostalgic reminiscence. It's possible that part of my left temporal lobe may have been scarred by a bout of encephalitis (possibly meningitis – it wasn't known at the time) at age 7, the epilepsy not appearing until years later. Upon researching, it seems that my father also had brief panic attacks and migraine starting in adolescence, both conditions which are linked with the epileptic condition and may be an indicator of a genetic pre-disposition to the disorder – my ‘threshold’ having been lowered further by viral illness.

TLE and me - in my own words

As a TL epileptic myself, I feel it may be useful to share these experiences and subsequent research findings in layman's terms with the paranormal researcher and investigator, so that there may be better understanding of how disordered brain function could be a consideration in certain cases.

In my own case, TLE was not diagnosed for a long time and, until it was, I was not able to rationalise it intellectually, although I suspected a psychiatric condition. I was wrong in thinking that I needed a psychiatrist – but it was indeed a psychiatrist who diagnosed the condition for me. I haven't experienced the simple and complex partial seizures for a few years now, but I am still haunted by the condition, as it has left its deep mark on my whole life in many ways. I still have some vague symptoms which may or may not be epilepsy related, as the seizure pattern can change over the years. I never experienced tonic-clonic seizures.

TLE seizures are often very difficult to describe due to their visceral nature, but here are descriptions of my experiences of four different types in italics, with added comments:

1: “As I walked back to the cottage after watching the sunset from the beach, I was deep in thought. The moon was rising over the mountain ahead of me and everything looked very beautiful. I was suddenly overcome with an intense feeling of excitement and pure joy and I was compelled to throw myself to the ground, which I did. I could feel the earth breathing, pulsating beneath me. At this moment it was as if time had stopped and I became aware that I knew everything there was to know and that I was an integral part of the universe and it would not exist without me ... the moment was pure harmony with the universe and everything in it. This event has affected my whole life ever since and I have wished for it to happen again. I have never since known happiness like it. It was my epiphany, my one and only conversation with God.”

There are times in our lives when we, or someone close to us, have experienced something similar to the above, in different contexts. I was sixteen years old when this happened. I used to call it my ‘initiation’, but to what I wasn't sure. Let's just say that it was a feeling that I had been privy to something incredibly important, something like a secret which would only be available to a certain few people. I felt privileged and spiritual. I had never felt anything like it before. It was this rapturous first seizure which possibly initiated the Dostoevsky’s syndrome.

As time went on, the seizures started to become troublesome in that the initial feeling of joy was replaced by fear and anxiety, the sense of connection replaced by disconnection, alienation and feelings of unreality. They were often precipitated by going up a flight of stairs, reason unknown but it seemed to be a major trigger or provocant for me. The warning or aura usually started with a strong sense of Jamais vu (familiar surroundings become unrecognisable) or Déjà vu (if I was somewhere unfamiliar it would be as if I'd been there before). There would be intense anxiety and always a strange rising feeling in my guts; random memory flashbacks which seemed to have nothing to do with my life but included childlike feelings, psychic feelings and reminiscences which were buried deep in my subconscious suddenly filled me with an intense nostalgia. I would often have auditory hallucinations, usually music or distorted, muffled sounds, like the sound of people talking underwater. Perception of passing time was also distorted. I gave some thought to the possibility that I might be becoming psychic in some way, not knowing that I was having seizures. These thoughts were preferable to thoughts that I might be dying of a brain tumour – I didn't dare tell anyone what I was going through.

2: “I got on to the bus and went up the stairs to get a seat, but before I got to the top, the funny feeling in my stomach got me again. I sat in the first seat I could see and closed my eyes – I willed the feeling of wanting to cry out to go away and it did. It left me with the familiar pulsation in my head. This time I was aware of what I was doing but I was afraid that it had happened while I was on public transport, which gave rise to a feeling of panic.”

The above description was one of the many brief simple partial seizures which were for me, the most frequent type.

3: “I walked up a flight of stairs to the Café, thinking I was early to meet my friends. As I reached the top step, I suddenly became aware of an intense jamais-vu … I had stepped up into a parallel universe, vaguely familiar but with something terribly wrong about it. Before I could even get to a chair to sit down in anticipation of what was going to happen, I stopped at the top and closed my eyes for a moment, my stomach started to churn and I let the intense fear wash over me. My ‘internal hi-fi’ kicked in and I listened to John Lennon singing a song I'd never heard, which made me open my eyes again … perhaps it lasted all of 3 seconds but it could have been 3 hours for all I knew … I had no sense of time. It seemed to fade out and everything went dim … I must have managed to get to a chair but I can't remember how … I became aware after a while and I was sitting looking at the pictures on the walls. My head was thumping and I forgot momentarily who I was, where I was and why I was there. This was not the same as the jamais vu – I had lost my memory this time. I left soon after I came to, without meeting my friends - I realised I was actually in the wrong place anyway. I must have looked as if I was very odd, but thankfully there were not many people around at the time – I don't think anyone actually noticed my possibly strange behaviour.”

This was more likely to have been a complex partial seizure as I had seemed to lose awareness for the first time. The seizures became frequent; during the five years in which they had intruded into my normal everyday life they would come in ‘clusters’ of two to six per day for around one week out of a month every two months or so. They would often come at night as I was falling asleep. It seems on the face of it that it may have been linked to my hormonal cycle: a surge of oestrogen in particular is known to lower the seizure threshold for some females.

4: “When it happened at home later in the week, I don't remember anything apart from suddenly seeing my father's face when he popped his head round the door … I didn't know who he was but I knew I should, it was very frightening – your thoughts race around after you realise you've been ‘gone’. It was as if I'd been in a coma all my life and suddenly woke up a fully grown adult.”

This was an absence seizure, again brief and often involving a sudden waking up from staring at a page in a book or an object, with some ‘loss of time’ effect.

I eventually came to ‘accept’ all the seizures as part of who I was and eventually they became less frequent; the aura diminished until it was just reminiscence – often with a feeling of butterflies in the stomach. Nowadays they are possibly all nocturnal, although it's difficult to know whether the visual and sensory hallucinations and myoclonic jerks I experience during the wake/sleep cycle are in fact seizures or some other form of sleep disorder. I also often experience daytime episodes of derealisation and ‘Alice in Wonderland’ syndrome, a descriptive name for a spatial hallucination which makes the sufferer feel as if they are incredibly small (or big) and objects look huge yet strangely far away (macropsia) or tiny (micropsia). This is also seen in migraine sufferers or as a result of drug use, but can also occur suddenly in normal people with no obvious cause other than tiredness or a raised temperature.

It may often be a frightening condition, but with experience of TLE I have come to understand many important factors in differentiating between altered states of consciousness and possible external paranormal experience. Sometimes the hallucinations can be wonderful. I was recently given a bunch of bright pink flowers when I awoke in the middle of the night! Even though the room was dark, the flowers were very bright and nothing like I'd seen in reality. It would be lovely to think that this was a random gift from a loved one who had passed on, but the rational side of me knows that it was just a visual hallucination produced by an awakened half-memory – the flowers' colour reminded me of something I used to own when I was younger. I couldn't quite put my finger on it but it came to me two days later – it was a bright pink scarf! The reason why that particular memory should be associated with the vision could be because I had just bought a T-shirt of the same colour … but if I wanted to imagine that there was a more psychic explanation, I could. My mother died when I had that scarf … and she liked the colour on me and wanted to tell me she approved of my choice. Otherwise, true to form, the hallucinations are usually trivial and mean nothing. More often, they are composed of vague dark shapes, colourful mini UFOs or fairy lights. Sometimes I awaken to just a feeling of fear and doom, not so pleasant. There are also out-of-body experiences to contend with, but they tend to be rather pleasant and more dreamlike, as opposed to the feeling that one's body is not one's own, an altogether more unsettling experience.

Ultimately, I would say that it's more a case of haunted mind than haunted house. Perhaps Hippocrates was right – the disease is no more sacred than a stomach ulcer.

References

Fugitive Minds: On Madness, Sleep and other Twilight Afflictions, Antonio Melechi ISBN 0-09-943627-2
Seized: Temporal Lobe Epilepsy as a Medical, Historical and Artistic Phenomenon, Eve LaPlante ISBN0-595-09431-7
Brainstorms: Epilepsy in our words, personal accounts of living with seizures, SC Schacter ISBN 0-88167-997-6
The Man Who Mistook His Wife for a Hat, Oliver Sacks ISBN 0-330-29491-1
‘Magnetic Fields and the Brain’, Anomaly: Journal of Research into the Paranormal. (2004) 35 J.J Braithwaite

The UK National Society for Epilepsy has more information on this subject.

First aid for epileptic seizures

1. Stay calm, most seizures only last a few minutes.
2. Prevent injury by moving nearby objects out of the way.
3. Pay attention to the length of the seizure.
4. Make the person as comfortable as possible.
5. Keep onlookers away.
6. Do NOT hold the person down.
7. Do NOT put anything in the person's mouth.
8. Do NOT give the person water, pills or food until they are fully alert.
9. If the seizure continues for more than five minutes, call 999/911.
10. Be sensitive and supportive and ask others to do the same.