Unbearable Agony: My Fight With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. Then came rapid stabs, like electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.
The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort behind a single eye that persists for three hours.
About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.
What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.
Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.
Historical medical texts suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive description 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 fixed hours”.
Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.
In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack eased.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.
But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidance need revising to reflect a
