Excruciating Pain: My Struggle Against the Mysterious Suffering of Cluster Headaches
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.
The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with intense pain behind one eye that persists for several hours.
Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.
One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.
Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.
Historical medical records suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading experts in treating the disorder explain this.
In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor 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 eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy 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 some individuals.
But consultant specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
