Full-Blown Pain: A Personal Fight With the Enigmatic Pain of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often start with intense discomfort around one eye that persists for three hours.
About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically 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 associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the inability to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Ancient healing records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
