Full-Blown Suffering: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came quick stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The attacks appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with severe discomfort behind one eye that lasts up to several hours.
About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, 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 remembers winning tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Historical healing records propose unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch doctor who provided the initial comprehensive description 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 officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.
In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, 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 deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.
Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
