Excruciating Agony: My Fight Against the Enigmatic Pain of Cluster Headaches
It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with severe pain around a single eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, 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 discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.
Historical medical records suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.
In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured 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 deactivation when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.
Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.
But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of 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 activity.
The national guidelines need revising to reflect a
