Excruciating Pain: A Personal Struggle With the Mysterious Suffering of Cluster Headaches
It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense pain around a single eye that lasts for several hours.
About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One study rated the sensation 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 pain-free.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.
Ancient healing records propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the disorder explain this.
In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.
Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.
But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
