Excruciating Agony: My Struggle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense discomfort behind a single eye that persists for three hours.
About one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.
What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.
National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with occasional attacks are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.
The national guidelines need updating to reflect a
