Full-Blown Pain: My Fight Against the Enigmatic Pain of Cluster Headaches

It was a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, 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 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, 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 simple 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 facility.

Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international 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 which supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming 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 certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, 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 suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a