Unbearable Agony: My Fight With the Puzzling Pain of Cluster Headaches
It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense pain around a single eye that persists up to three hours.
About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with abrupt, severe agony around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the inability to organize life around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms 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 facility.
Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.
In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. More prolonged 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 bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
