Excruciating Suffering: My Struggle Against 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 intense pain bloomed behind my right eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe discomfort around one eye that persists for several hours.
Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Attacks usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.
What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.
Still, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Ancient medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.
In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.
Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The official guidelines need revising to reflect a
