Have you ever had insomnia? Sure, most people have at some point in their lives. It’s one of those things that gets generalised and used to mean “I didn’t sleep so well last night.” And while that’s technically an example of insomnia, those of us who truly suffer from extended bouts of sleeplessness have little patience for that diminishing attitude.

I suffer from chronic insomnia. I have to take a sedative to get any sleep at all, and that usually works fairly well, though there are times when I curse my defective brain. Actually, I do that often, but usually for different reasons.

My current record for being awake – and I mean totally, completely, unmistakably awake – is just over 90 hours. It wasn’t a fun experience, I assure you. Luckily, my daily schedule isn’t so demanding that I couldn’t cope with the blurred vision, constant headache, and lack of focus, not to mention a deeply unpleasant disposition. I really can’t imagine what might have happened had I not finally found relief in medication. Unfortunately, for me and you, imagination isn’t really necessary to find out.

Sometimes (incorrectly) called total insomnia, there is an extremely rare disease that causes those who suffer through it, to stop sleeping…forever. That’s a little misleading though, since for those poor people, forever is only about 18 months. That’s because Fatal Familial Insomnia (FFI) is terminal and there’s no known cure or remedy.

Before we get to an explanation of what this is, just take a moment to think about that. No sleep, ever again. Conscious, aware, awake; twenty-four hours a day, seven days a week, 365 days a year. Monotonous is a word that comes to mind, though it’s wholly inadequate to describe such an experience. Tortuous might work better.

I’m reminded of one of my favourite Creepypasta short stories; The Russian Sleep Experiment. If you’ve never read it, you really should. It will give you chills. The original author of the story is unknown, but that’s OK, this tale has a life of its own. For fear of offering unsolicited spoilers, I’ll just say that the subjects of the Russian Sleep Experiment fared no better than those who suffer from FFI, and arguably, fared far worse.

FFI is a neurological condition caused by a misfolded protein in the DNA of the afflicted, of which there have been only about 100 cases. That protein, called a prion protein, is known as PrPSc (PrPC in non-FFI subjects). Essentially, the prion form of the protein causes a change in certain amino acids – due to the protein strand folding incorrectly – which, when combined with other genetic markers, then affects the brain’s sleep centers. FFI is genetic, and therefore hereditary, but there is an even rarer form known as Sporadic Fatal Insomnia (sFI) that occurs spontaneously, the cause of which is not understood. You may wish to know that PrPSc is the same protein that’s responsible for bovine spongiform encephalopathy, also known as Mad Cow Disease.

You may be thinking that this is all well and good; interesting yet disturbing, but not exactly in keeping with my usual topics. Well, here goes…

There have been, over the years, many stories – urban legends if you will – describing the incredible experiences of people who remain awake for years, decades sometimes.

The famous UK magazine Fortean Times covered the story of Ines Fernandez in 1975; a Spanish woman of 57 years (at the time), who claimed to have been awake for 30 years.[1] They told the story of the day following the last time she ever slept, suggesting that she suffered some kind of physical neuronal trauma (apparently caused or triggered by a yawn) and then simply never fell asleep again.

There’s also the Vietnamese man, Ngoc Thai, 71, who claims he hasn’t slept for more than 41 years. His insomnia began after he suffered a mysterious fever in 1973, and according to all sources, he suffered no ill-effect, outside of the fact that he never sleeps.

Thai and Fernandez are special cases. As mentioned, Thai suffered no diminished capacity from his insomnia, in fact he continued to work on his own farm throughout his life. Fernandez is said to have suffered no other symptoms either, beyond a self-described depression following the death of her husband, which she blamed on the loneliness of the long nights.

This shouldn’t be possible. Sleep deprivation causes – almost universally – fatigue, clumsiness, weight loss/gain, diabetes, decreased cognitive function, headaches, hallucinations, depression, hand tremors, seizures, mania, and ultimately death, all over a period of months. These symptoms and effects are well documented and studied, so how is it that Ines Fernandez and Ngoc Thai – and presumably others – could remain awake for decades, yet suffer no ill-effect.

There are some explanations. In both cases, the associated literature and verbiage across the internet, is that they were thoroughly examined by doctors, all of whom came up empty in their diagnosis. You’ll note that both are from areas of the world not exactly known for the competence of their medical institutions. Even so, one would think any doctor could tell if a person is awake or not.

The popular answer in this is that all of these cases are the result of some supra-natural ability or skill that’s being accessed by the patient, and some people in new age circles have held them out to be spiritually significant – Ngoc Thai in particular is something of a celebrity in Vietnam.

There is a more likely explanation though, as I’m sure you guessed. It’s a smidge more mundane than having the superpower of total insomnia, but it fits relatively well. It’s called sleep state misperception (SSM), which as may be apparent, describes people who mistakenly perceive periods of sleep as wakefulness. Basically, they really do sleep, but they just don’t realise they did.

That almost seems like an April fool’s joke from the medical community, but it really is the cause of many of these claims. It’s classified as a sleep disorder through the International Classification of Sleep Disorders (ICSD), though it’s more of a psychological condition than a physical ailment. The key to SSM is that those who suffer with it will earnestly claim that they haven’t slept, or have slept very little, but during sleep studies, they show normal sleep patterns.

The upshot is that SSM doesn’t come with the terrible side-effects of FFI, such as death, which is handy. Those with SSM often report depression, though the causal relationship between the two disorders isn’t as solid as most think.

So, to spell it out, the woman who hadn’t slept in 30 years, probably slept a lot more than she thinks.

[1] The Woman Who Hasn’t Slept in 30 Years. Trivia-Library.com: http://www.trivia-library.com/b/mystery-and-strange-phenomenon-from-the-fortean-times-part-3.htm