Unbearable Suffering: My Battle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe discomfort behind one eye that lasts for three hours.
About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started 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 condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “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, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.
Ancient medical texts propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.
In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.
Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
