Unbearable Agony: A Personal Fight With the Enigmatic Pain of Cluster Headache Syndrome

It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She particularly 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a