Excruciating Agony: A Personal Fight Against the Mysterious Pain of Cluster Headache Syndrome
It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe discomfort around a single eye that persists up to three hours.
About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the failure to organize life around unpredictable attacks took its effect. She particularly 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 simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Ancient medical texts suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
