Unbearable Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headache Syndrome
It began on a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe discomfort behind a single eye that lasts for three hours.
About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms 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 throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.
Ancient healing texts suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed 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, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.
Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.
But leading specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
