Excruciating Pain: A Personal Struggle Against the Puzzling Pain of Cluster Headaches
It was a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.
The attacks returned frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with intense discomfort behind a single eye that lasts for several hours.
About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.
One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.
Historical healing texts propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.
In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.
Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
