Excruciating headaches make me bang my head off the walls
- By Angie Brown
- BBC Scotland, Edinburgh and East correspondent
For 17 years, Darren Frankish had headaches so painful they left him screaming and banging his head against walls.
The 53-year-old from Edinburgh says they feel like he was hit full force with a baseball bat, while he was stabbed in the eye with a knife.
Officially known as cluster headache, it is believed to be one of the most painful conditions to affect humans.
The horticulturist told BBC Scotland News: “During lockdown I had to walk to hospital and I remember thinking if a bus came I would jump in front of it, so I know why it’s called a suicide headache.”
“I live in fear of the next attack. It scares my life. It’s psychological torture when I know it could come at any time. I’m so afraid of them.”
Attacks usually last between 15 minutes and three hours and can occur in groups of seven or eight attacks per day.
But Darren also suffered seizures that lasted 12 hours.
He says they start with severe pain on the left side of his head, above his eye.
He said: “My left eye began to turn red, began to droop and tears began to flow profusely. My nose became clogged and severe pain began in my head.”
“I can only describe the attack as horrific. It feels as if someone hit you hard with a baseball bat. It also feels as if a knife has been pierced above my left eye and then pushed down.
“I feel very anxious and sometimes physically ill, screaming into a pillow, banging my head against the wall or something hard, and usually wandering around the living room in total darkness because I can’t stand any light.”
Darren sometimes goes for a walk holding a cloth over his left eye because it bleeds so badly.
He walks into empty spaces and carries a card in case anyone tries to talk to him.
“I cannot communicate with anyone when I am attacked,” he said.
Darren said his attacks have recently become more frequent and last longer.
Last May, he spent two nights in the accident and emergency department at the Royal Infirmary in Edinburgh after two attacks, each lasting 12 hours.
He said: “These attacks are painful and are the worst attacks I have ever witnessed.”
What is cluster headache?
Cluster headaches are rare, affecting one in 1,000 people – an estimated 65,000 people in the UK.
But it’s a misnomer for a condition that is “much more than just a headache,” according to Katie Martin, director of Brain Research UK.
“As Darren described, the excruciating pain caused by a cluster attack is unbearable, leaving people screaming in pain, and banging their heads against walls in an attempt to end the pain.
“We are funding much-needed research to accelerate our understanding of this condition, towards the development of new treatments that will provide effective relief to all affected.”
Those with headaches are usually over 30 years old, and headaches are more common in men than in women.
The frequency of attacks may vary from one attack every few days to multiple attacks daily. The duration of each attack may range from 15 minutes to several hours.
They cause many people to be hospitalized, limiting people’s lifestyles and often leading to unemployment.
They are also associated with a three-fold increased risk of depression, and suicidal tendencies are often reported.
Darren got his first ring in 2007 when he was 37 years old.
The father-of-two said: “I was on holiday with my family in Prague when I had a headache so bad that I thought there was something serious with me like a brain tumour.”
He has since been prescribed medications including steroids, lithium, heart medication and epilepsy tablets.
“I don’t have epilepsy but they try everything with me but nothing works.
“I also have an injection that I can use as soon as an attack occurs, and it is sometimes effective.”
Darren has oxygen canisters in his home that he uses to try to stop the attack.
He has tried different diets and quit smoking and alcohol but still suffers from crippling headaches.
“The next step is that I will inject a nerve block into my head,” he said.
Local anesthetic numbs the nerves in the short term. Steroids reduce inflammation. It can reduce attacks for up to a year.
“I’m willing to take the risk of going through this because suicidal headaches severely affect my life,” he said. “They destroy everything and I cannot do anything when the attacks happen.
“It put a strain on my marriage and was part of the reason for my divorce and I feel bad for my children who are growing up hearing my screams.”
Darren had read some evidence suggesting that cluster headaches could be caused by meningitis, which he had when he was two and then again when he was 12.
For now he has to live with them.
“She does it when she wants, and I have no control over her. When it comes to you, she gets you,” he said.
You can find more information and support about suicide and feelings of hopelessness on the BBC Action Line website.