Excruciating Pain: My Fight Against the Enigmatic Pain of Cluster Headaches
It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense pain behind one eye that lasts up to three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.
Her family often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient healing records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.
It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.
A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.
The official guidance need revising to reflect a
