A man who suffers from excruciating cluster headaches says they always occur at exactly the same time - and the pain is "torture". Luke MacDonald, 33, has been living with the condition for decades but was only diagnosed as an adult.
He the describes the pain as like a hot poker being drive into the back of your eyeball - and says it can leave him suicidal. Unusually, Luke, from Hertfordshire, always gets the headaches at the same times - 11:44pm and 2:30am.
Now living in Cambodia, he says he has found support in an online community, and wants to speak out to raise awareness. Luke, who runs a burger van, said: “I get them at 11:44pm on the dot, until 12:44am. I then get another one at 2:30am.
“It starts with what we call in the community a shadow, it’s like pain shadow which creeps from behind your head to your right ear. It is always on right side of head. Then once it fully starts it is the worst pain imaginable.
“It feels like a red-hot poker is driving into the back of right eye from inside your brain or like something's dragging the back of eye into your brain. The pain gets increasingly worse, until you literally resort to trying to knock yourself out because it’s so bad.
You are sensitive to light, sound, everything, it’s like someone has set a bomb off behind your eyeball. Luke got his first cluster headache aged six, which was so painful he began smacking his head against a car door.
His grandparents rushed him to hospital where they tested him for meningitis but did not give him a diagnosis - and told him it was “probably migraines”, he claims. The headaches then subsided until Luke was a teenager when they resurfaced.
He again went to hospital, but doctors didn't diagnose him. From the age of 18, Luke has been traveling around the world, spending time living all across Asia.
He is currently living in Cambodia after coming over from Thailand. It was only when he was in Thailand and he had an attack, that a doctor diagnosed him with having cluster headaches.
Luke had been living for three years without an attack, which he attributed to taking ‘a heavy dose of psylocibin mushrooms’ but they returned with a vengeance two months ago. There is an active community on Facebook of people who suffer from the horrible illness which Luke says is a big comfort to him.
He said: “We basically, try and stop each other from killing ourselves. There are some people who have it chronically, and for them they have headaches for maybe ten hours of the day.
“For people like that suicide is very common, and I do not blame them for it." Luke says that the pain is nothing like a migraine or strong headache.
“The problem with it is people say, ‘Oh I have migraines too’ but it is a world apart from that. It is completely debilitating, I live in constant fear of the next attack.
But it is not just the individual that is impacted by having it, with family members having to live though the ordeal of not being able to do anything to alleviate the pain. Luke said: “There are two parts to having cluster headaches.
“There is the pain side and the suffering side. The suffering side is living in constant fear of getting the next headache and the impact the illness has on my wife and friends."
Luke says it is horrendous for his wife Holly, who is powerless once an attack starts. The pair tied the knot in December, having been together for ten years.
“She's the one who has to sit there every night while I’m wailing in pain. She doesn’t sleep a wink when I’m having an attack, she stays up and makes sure I don’t harm myself.
“I want to stop feeling sorry for myself and try and make people a bit more aware of it. This illness is killing people and there is so little research into it.
“I just want to raise as much awareness of it as possible so more research can be done to reduce the suffering, we all have to go through.
