Unbearable Pain: My Fight With the Mysterious Pain of Cluster Headaches
It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.
The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe pain behind one eye that persists up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical records propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.
In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack passed.
Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.
The official guidance need revising to reflect a
