Excruciating Agony: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. It was followed by quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Four 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 ibuprofen, but the agony remained unbearable.
The headaches returned frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense pain around one eye that persists for several hours.
About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Still, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
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 linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.
It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in diagnosing the condition note this.
In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, 78, has experienced 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 molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.
But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
