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The Most Extreme Cases of Insomnia Revealed

Have you read the book “Insomnia” by acclaimed author, Stephen King? The protago-
nist of the story, Ralph, suffers from insomnia, waking earlier and earlier every morning.
His insomnia is caused by his wife’s death and as it progresses, he was seeing entities,
known as the bald doctors, not usually seen by normal people. The fictional book is not
too far from reality though, because as we suffer from sleeplessness, our cognitive func-
tions become delayed. Thus, there’s that possibility of experiencing hallucinations and
paranoia as our sleeping pattern is disturbed exceedingly.

Well, there are extreme cases of insomnia that actually

ended in death

And these are not from fictional novels nor television series. These were actual cases of
fatal types of insomnia that made the patient lose the ability to sleep. Unfortunately,
these were not cases of experimental or clinical trials. Like that of Randy Gardner, who
is officially recorded as the holder for the longest amount of time that a human was able
to go without sleep. The cases you’re about to read are of actual people who cannot
control their genes and their fates when it comes to their sleeplessness.

Why were these cases included in this list?

These are the most extreme cases of insomnia ever recorded in history. The first three
cases ended in death. The last two didn't end in death but you would soon find out why
they made it to the list. So if ever you’re up at night thinking about how bad you have it
because of your insomnia, you can open up this blog post and see just how much worse
can it be. Just imagine, having that genetic abnormality that makes you vulnerable for
the waking coma type of insomnia. Or just imagine not being able to sleep as much as
you’d like to every single night.

1.The Case of the Giacomo Family of Veneto (Italy)

Type of Insomnia: Fatal Familial Insomnia

The Story: I have already related the story before of a certain Italian family who shares
the gene for a rare sleep disorder known as fatal familial insomnia. Let’s dig deep into
the beginnings of their story. It was in the year 1836 when the first ever case of fatal fa-
milial insomnia was recorded, in the name of a man named Giacomo, who suddenly fell
ill at the age of 45. While the entire onset of his disease, and its diagnosis, wasn’t given,
he suffered from the usual common denominators of fatal familial insomnia that we
know of today. These are the following: insomnia and dementia.
Giacomo had sons and the generation of the family expanded. Yet what’s unusual is
every few years or so, a premature death in the family would occur. Physicians aren't
able to pinpoint the exact causes of the deaths. But the pattern remains the same, an
onset of sleeplessness, followed by paranoia or hallucinations, mental dysfunction and
eventually coma, then death. An interesting commonality as well is that the symptoms
only appear during the middle ages of the individual and prognosis doesn't last for more
than a year, a few months at the very least.

It was only in 1984, when a member of the family named Silvano allowed scientists to
experiment on his brain after his death, that the true nature of the disease was found.
Turns out, because of a mutation in the cellular prion protein of these individuals, the
ability to sleep was literally blocked. The disease is autosomal dominant which means it
can be passed from one generation to the next. This explains the unusual deaths of the
Giacomo family members from one generation to the other.

Until now, the relatives and new generation of the Giacomo family still has the mutated
gene which makes them vulnerable to fatal familial insomnia. Just like other prion dis-
eases, the brain itself of the deceased patient serves as the evidence for the disease.
Particularly, it’s the thalamus of the brain where there is accumulation of the mutated
prions. The appearance of the affected parts become spongiform and distinct neuronal
loss can be seen.

2. Brother and Sister Share the Same Fate

Type of Insomnia: Fatal Familial Insomnia

The Story: Hayley Webb is your typical ambitious and light-hearted young adult. She
works as a reporter for a local network in Australia. On the other hand, her brother,
Lachlan Webb is a successful startup co-founder. Who would have thought that these
sister and brother duo has a dark secret beneath their successes in life? Believe it or
not, they have the genes for the fatal familial insomnia as well.
In an interview with Hayley and Lachlan, they related the story of how they became
aware of this seemingly cruel curse in their family. It started out with their grandmother,
who had the symptoms of fatal familial insomnia, including hallucinations, dementia and
eventual mental incapacity. It was then that they were able to know the name of the
dreaded disease.

In 2011, the disease took a new form in the case of their mother. The sad part was that
it was too sudden and within just six months, their mother died of chronic insomnia and
exhaustion. The stages were the same, initial dementia, then hallucinations, a decline in
the mental and physical capabilities, before the grueling death. As the siblings had told
the media, the disease took their mother’s brother as well, but at such an early age of
20.
Right now, the siblings are taking part in research studies for their disease. They are
also living life to the fullest, not letting the disease rule in their lives. Along with Sonia
Vallabh, which is one of the few recipients of the gene for the disease as well, and her
husband, they are helping researchers find more information about this rare but deadly
sleeping/genetic disorder.

3. The First Ever Case of Sporadic Fatal Insomnia of an Unnamed Man

Type of Insomnia: Sporadic Fatal Insomnia

The Story: In the previous cases, the fatal insomnia was caused by a faulty cellular pri-
on protein, hence the reasoning of the genetic transmission of the disease. But there’s
another type of fatal insomnia, one that occurs without the faulty cellular prion protein
and is known as the sporadic fatal insomnia. In essence, sporadic fatal insomnia share
the same phenotypes and symptoms with fatal familial insomnia except the gene muta-
tion.

The first ever recorded case of sporadic fatal insomnia is that of a 44-year old man in
1999. The disease started out with chronic insomnia, with sleep durations not lasting for
more than an hour at night. Interestingly, he lost first his control of motor functions be-
fore his cognitive abilities. Within 16 months into the disease, he developed both hallu-
cinations and delusions. Shortly after, he died due to pneumonia, caused by his inability
to cough because of the severe motor dysfunction.

This was the first time that sporadic fatal insomnia was distinguished from fatal familial
insomnia. On anatomical and histological examination of the patient’s brain, the re-
searchers were able to see the similarities and differences between the two subtypes of
fatal insomnia. Whereas the familial type shows mutations in the cellular prion protein,
the sporadic type doesn't but does show increased amounts of protease-resistant PrP-
Sc. The usual spongiform appearance of the thalamus and neuronal loss were also
seen in samples of the brain of the patient.

4. The Case of a 13-Year Old Boy Who Died Because of Insomnia

Type of Insomnia: Sporadic Fatal Insomnia

The Story: If you remember what I’ve mentioned above, both subtypes of fatal insom-
nia manifest its symptoms during the middle age of the affected individual. But there
were also cases of patients who were struck by the diseases at younger ages. This next
case differs because it was recorded as the youngest death due to fatal insomnia. It
also proves the scary fact that even adolescents can be affected by the sporadic sub-
type of the disease.
In March of the year 2009, a 13-year old boy presented himself to an emergency de-
partment. Prior to the admission, he suffered from two concussions, so his symptoms of
double vision and slurred speech amongst others were diagnosed as post-concussive
syndrome. Thereafter, the condition of the boy became worse, with a slowing gait,
tremors and decrease of mental cognition.

By June, the patient needed a wheelchair as he cannot move on his own anymore. To-
wards the next two years, his condition declined fully, delirium, ataxia and aspiration
pneumonia were diagnosed as well. In the year 2012, age 16 years, the patient died
because of respiratory issues due to his aspirator pneumonia, much like the previous
case we have mentioned.

With the anatomical and histological examinations of the brain specimen of the patient,
similar end-results were found. The thalamic area of the brain suffered from severe neu-
ronal loss and astroglial proliferation. The absence of mutation in the cellular prion pro-
tein of the patient proved that this was a case of sporadic fatal insomnia. Yet a limitation
of the case is that the researchers weren't able to test for insomnia itself through
polysomnography.

5. The Case of An Asian-American Who Thought Less of Her 8-Hour

Sleep

Type of Insomnia: Paradoxical Insomnia

The Story: The disorder paradoxical insomnia literally means contradictory insomnia. In
such a disorder, the patient feels as if he or she isn't getting enough sleep. This occurs
even if in reality he or she is getting more than enough deep sleep. Aside from the
stress brought about by the paradox, the person might feel the need for medications or
treatments despite the fact that there is no need for them.
In a 1995 clinical case study conducted by Dr. Conroy, he investigated on the paradoxi-
cal insomnia of a 42-year old Asian-American. The patient has consulted with other
physicians before and she was recommended sleep medications. As the patient wanted
to remove the medication and still be able to sleep, she consulted with a sleep disorders
center. Upon her analysis, she related that she gets around just four hours of sleep per
night with the medications.

She was examined under polysomnography, with the medication discontinued for 10
days prior to the test. Upon probing, the patient revealed that she thought that she only
has around 5 to 10 minutes during the entire 8 hours she was in bed. Yet the
polysomnography revealed that she slept 6 hours out of the 8 hours and even complet-
ed normal sleep cycles, mildly being disturbed by her apnea.

For me, this is an interesting case as it highlights the main limitation of survey studies
when it comes to sleeping. Paradoxical insomnia is an under diagnosed disorder and
what if a large number of the participants in the surveys could have been suffering from
it? Perhaps more studies about the prevalence of paradoxical insomnia should be un-
dertaken by researchers.

6. The Case of Neil Epstein - More Than 37 Years of Interrupted Sleep

Type of Insomnia: Idiopathic Insomnia

The Story: Idiopathic insomnia is another rare form of insomnia, occurring in less than
one percent of the population. It can be diagnosed in the absence of any medical condi-
tions, psychological conditions or neurological conditions. Similarly, without any external
stimuli such as disruptive lifestyle or stress, idiopathic insomnia can also be diagnosed.
What distinguishes it from other types of insomnia is that its onset is early, usually dur-
ing childhood.
Such is the case of Neil Epstein, which has had interrupted sleep more than 37 years
now. His condition begun during his childhood, as early as seven years of age. Over the
years, he had been able to take just three to four hours of sleep per night. And this is
not the continuous, NREM sleep that we enjoy of. Every few minutes or so he would
wake up, seemingly taking small catnaps around the night. And no, he isn't able to take
naps during the day that could have contributed to his insomnia.

While some people can get away with just three or four hours of sleep per night, it’s in-
evitable for them to take short naps during the day. This can help pay for the supposed
sleep debt that they have. In Neil Epstein’s case though, his sleep debt just seems to
rise and rise, without him being able to pay it back. He does take medications, on mod-
erate doses, but they can only do so much for him.

The hardest for man is lie to himself between 3:00 and

6:00 in the morning
This quite appropriate quote was taken from the same book we have discussed above.
I’m sure insomniacs out there can truly relate to this quote. But for some people, the
hardest part is just to accept your fate, like in the cases of the Giacomo family and
Webb family. It’s when you are vulnerable to that disease that it makes you more fright-
ened and scared. And when it finally comes for you, it’s like you have nowhere to run or
go to. That’s the terrible side of fatal insomnia.

Yet in some more cases, like for the patients who suffered from sporadic fatal insomnia,
you just don't know what have hit you. You thought you were safe and then suddenly,
you suffer from the exact same symptoms of those suffering from fatal familial insomnia.
The worse part is you know what’s happening. It’s a slow, awake form of coma, where
you see your body degenerate and you suffer from brain overexertion.

In other cases, you are just so tired and you want that good quality sleep. But your body
and brain just won't obey you. Or in the case of paradoxical insomnia, it tricks you into
thinking you’re not getting optimal sleep. In idiopathic insomnia, you remain awake de-
spite the tiredness you feel. This goes on for years and years, making one grumpy, tired
and irritable.

Do you know of anyone suffering from any of these rare subtypes of insomnia? What
did you do to help them? Share your story in the comments section below!