Excruciating Agony: A Personal Struggle With the Puzzling Pain of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches typically begin with severe pain behind a single eye that persists up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks 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 deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the inability to plan life around unpredictable pain took its effect. 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 simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.
Historical medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.
Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.
The official guidance need updating to reflect a
