Full-Blown Pain: A Personal Battle With the Puzzling Suffering of Cluster Headaches

It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by quick stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain behind a single eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped 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 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, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a