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

It began on a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally 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 major artery which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

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

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with acute therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a