Published: 06:00, 29 May 2021
A teenager has opened up about living with one of the most painful conditions in the world.
Ashford resident Jordan Rossiter talked to Alex Jee about her experience with the extremely rare cluster headaches.
Jordan Rossiter describes what a cluster headache is like
While sat talking to me on the phone, Jordan Rossiter is nursing a throbbing in her head. It has been there for hours.
“It’s there, for sure,” she says, “but it’s slightly easier because I had a red bull earlier- the taurine in it seems to help with the pain.”
Earlier that day, however, she was left almost immobilised, unable to speak or even open her mouth as she experienced one of the worst pains known to man.
The 19-year-old suffers from Cluster Headaches, an extremely rare chronic condition that can see the victim endure horrific pain for hours, as often as several times a day.
It features sharp and intense pain on one side of the head, often felt around the eye, temple and sometimes face.
A study in 2018 found that the condition is rated as being more painful than labour and pancreatitis. The pain is so severe that it has been known to make sufferers bang their head against the wall.
Ms Rossiter said: "The pain when I have an attack, torture is the nicest way possible to describe it.
"It prevents me from eating, sleeping, drinking and carrying out daily tasks.
"It feels like Mike Tyson has repeatedly punched me in the face, over and over again.
"My temple constantly feels like there is a screwdriver constantly twisting into my head as hard as it can, and I get shock-like pains in my face.
"On a scale of one to 10 the pain is worse than 10. It’s tormenting, I never thought that anyone could feel a pain quite as badly as people with this condition do."
Cluster headaches are extremely rare, and it is even more uncommon for a young woman to be diagnosed with them, with the condition usually found in men in their 30s or 40s.
For Jordan, it started around three and a half years ago with pains in her ear originally stemming from a perforated eardrum.
After having it misdiagnosed as trigeminal neuralgia for years, another chronic condition with similar, equally painful symptoms, it was not until four weeks ago that she finally learned what had been plaguing her.
During that time, the Charing Heath resident was forced to learn which normal everyday tasks could potentially trigger the pain.
She said: "The triggers vary but include brushing my hair, brushing my teeth, showering, going out in the wind, heat and touch... I really can't do those daily things any more.
"When I'm having an attack I can't walk, eat, sleep, or speak – literally if I try and open my mouth I can't do anything other than dribble because I can't fully open my mouth."
However, after finally learning of her actual condition, the former North Cliff student is hopeful.
"About a month ago I went to see a neurologist in St Thomas in London", she explained, "who told me that I had SUNCT – a form of cluster headache.
"There was a scan of my head on the board and they could actually point out the trigeminal nerve, and there was nothing pressing against it which is what causes it.
"That lead them to conclude it was cluster headaches. They have given me medication for that and I'm waiting for it to, I suppose settle in, to see how well it works."
After her diagnosis, the support worker is now on a mission to find others with the same condition.
"I had never heard of the condition before I was diagnosed with it", she explained, "which is why I'm trying to spread awareness now and find others going through the same thing.
"I have found a few people with it and we all suffer from similar conditions. It is comforting in a way to know that we are not alone.
"My family have supported me fantastically but when something is this rare it's easy to feel isolated."
She has also opened a facebook page documenting her experience and encouraging others to get in touch.