Excruciating Suffering: A Personal Fight With the Puzzling Pain of Cluster Headaches

It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially 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 most severe episodes. “It robs you of the simple 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 facility.

Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed 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 fixed hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, 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, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a