Mindscapes is our column on brain science with a difference: we meet people who live with the world's most mysterious neurological conditions
Condition: Ecstatic epilepsy
"It's like when you have an orgasm. You don't get to the orgasm in one step. You go progressively. [My seizure] was the same kind of thing."
Sandra thinks she had her earliest epileptic seizures when she was just 4 years old. But they were no ordinary seizures. Hers gave her an intense feeling of bliss.
Blissful is not how most of us think of epilepsy. Fabienne Picard at the University Hospital Geneva, in Switzerland, says Sandra experienced a form of partial seizure – one localised to a specific region of the brain – known as an ecstatic seizure. These were immortalised in literature by the Russian novelist Fyodor Dostoevsky, who also had them.
Dostoevsky described his seizures in a letter to a friend: "I feel entirely in harmony with myself and the whole world, and this feeling is so strong and so delightful that for a few seconds of such bliss one would gladly give up 10 years of one's life, if not one's whole life."
To explain how she felt during her seizures, Sandra makes an analogy with a highly pleasurable event. "It's like when you have an orgasm," she says. "You don't get to the orgasm in one step. You go progressively. [The seizure] was the same kind of thing."
However, "it was not a sexual feeling", she says. "It was more psychological."
As a seizure took hold, her heart would start racing. "I felt like I was galloping, like a cowboy," she says, towards something higher up. "I was going up, going up, and at the top, it stopped, like an orgasm, 'poof'."
A 41-year-old architect, Sandra grew up in Spain, moved to Geneva and became Picard's patient. Sandra's account struck a chord with Picard, who had heard other people speak of similar seizures. "They say that they have no worries," says Picard. "It's a feeling of complete serenity and sense of understanding the whole. Everything seems clear and coherent, and there is a sort of harmony between them and the whole world during these seizures."
Sandra agrees. At the height of each seizure, "you are just feeling energy and all your senses", she says. "You take in everything that is around, you get a fusion. You forget yourself."
Attempting to further explain the ineffable, Sandra recalls the one and only time she took LSD, at a party in London, at 2 am. She and her friend stayed up the whole night, and at 10 am they went to see an exhibition of work by the German surrealist artist, Max Ernst. "I understood everything there. It was making a lot of sense," Sandra says.
She felt a similar clarity during her seizures. Sandra compares it to how we feel in a dream. "Your dream makes sense when you are having it," she says. "But when you explain your dream to others, you realise that you are not able to explain all the deep things you have done in your dream, how you have put everything together. It's impossible."
For Sandra, the ecstatic seizures were undeniably positive. "Somehow, I am quite happy about having had these epileptic seizures," she says. "It is not something that has affected my life at all."
Only once did she have a bad experience. When she was about 22, during one of her partial seizures, she felt trapped in that pleasant state of mind. She felt she could not snap out of it, and the feeling of helplessness scared her. "Imagine that you are physically dead, but your mind is going on, and you are not able to communicate outside you," she says. "It's horrible."
Neurological examinations revealed nothing amiss in Sandra's brain, no particular region or focus for her seizures. But studies of other people with similar seizures implicate the anterior insula.
The insula is a deep-brain structure found within the fissure that separates the front and parietal lobes from the temporal lobe, and is known to integrate external stimuli and internal body states. Some researchers think that the anterior insula is responsible for creating an awareness of our body's physiological and emotional state, giving us a sense of physical well-being. In another of Picard's patients with ecstatic epilepsy, a nuclear imaging study during a seizure showed hyper-activation of the anterior insula, strongly suggesting that this gave rise to the feelings of bliss reported by the patients (Cortex, DOI: 10.1016/j.cortex.2013.01.006).
For the past eight years, Sandra has successfully treated with medication, most recently levetiracetam, a drug used to counter partial seizures.
Correction: When this article was first published on 21 June 2013, it referred to an EEG when it should have said nuclear imaging. This has now been corrected.
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