Unbearable Agony: My Fight With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense discomfort behind a single eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly 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 incapacitation 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 obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.
In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.
But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with abortive therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
