20 milligrams of Olanzapine, 800 milligrams of Quetiapine, 100 milligrams of Clomipramine, and 2 milligrams of Clonazepam.
That’s the medication 29-year-old Karl Mercieca needs to consume to get three hours of light sleep in an entire night – and it’s been this way for well over a year.
“In July 2019, I started experiencing difficulty staying asleep. So I’d sleep then wake up multiple times throughout the night. From that point on, things just started getting worse,” Mercieca said.
“It got harder and harder to fall asleep and stay asleep, and just a month later I got my first episode of complete insomnia.”
This first episode consisted of seven consecutive sleepless nights, an event which led Mercieca to Mater Dei Hospital’s emergency department.
“From there, I was sent straight to Mount Carmel, where a doctor first prescribed me sedative medication.”
From that point on, Mercieca’s list of prescribed medications just got bigger and bigger.
“They started by giving me slow doses of Atarax, which is commonly prescribed for insomnia. That had no effect. Then we switched up to something stronger, Zyprexa. That slowly started to work. A couple of weeks later, I got my first prescription for Olanzapine, but after a while that stopped working, so I was back to where I started.”
Now, Mercieca is on maximum doses of all of his prescribed medications, meaning that he cannot consume any more safely. In spite of this, he’s lucky if he gets three hours’ worth of shut-eye.
“Ever since I was first admitted to Mount Carmel Hospital, I’ve been going there once every two weeks on an outpatient basis. The issue is that tomorrow I’m meant to be discharged,” Mercieca said.
Despite the long-standing relationship he’s had with doctors, no one has yet been able to diagnose Mercieca’s condition. Many simply attribute his issues to anxiety.
In light of this, Mercieca was previously convinced that he had Fatal Familial Insomnia (FFI), an extremely rare brain disorder characterised by an inability to sleep. The disorder’s symptoms progressively worsen, oftentimes leading to death.
“I did a genetic test to rule this disorder out, and thankfully, it resulted negative. But I’m still absolutely lost as to what I should do now – especially since I’m cutting ties with Mount Carmel doctors,” Mercieca said.
To cope with his issues, Mercieca started a YouTube channel where talks about his symptoms and keeps track of his deterioration.
“It brings me some measure of comfort. This is all quite a scary experience, and I wanted to post these videos just in case something happens to me. I want there to be a record of what I’m going through,” Mercieca said.
“Thanks to these videos, I met at least six other people who suffer from very similar symptoms. They too have been left in limbo, but at least it’s a good way to connect with the online community.”
Mercieca was inspired to upload these videos after watching similar content uploaded by an Indonesian man called Ricard Siagian. Siagian documented his battle with FFI, a journey that ended with his death.
Having ruled out an FFI diagnosis and with the support of a newly-established online community, Mercieca has now devised a plan to bring his suffering to an end.
“Now I’m planning to upload a video addressed to the medical community where I’d offer €2,000 to any medical student or doctor who can diagnose me,” Mercieca said.
“It feels like without that sort of incentive, they just brush my condition off as anxiety.”
As he embarks on this journey, Mercieca is simultaneously trying his hardest to cope with the everyday struggles brought on by his unknown condition.
“I’m still very scared but I’m taking it day by day. It’s getting to the point where the medications I’m taking are wearing off, and I realise that there’s nothing else I can do,” Mercieca confessed.
“They can’t give me any more medication, so I sort of feel like I’m waiting for the end.”