Full-Blown Suffering: A Personal Battle With the Enigmatic Suffering of Cluster Headache Syndrome

It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a