Excruciating Agony: A Personal Battle Against the Enigmatic Suffering of Cluster Headache Syndrome
It began on a overcast weekday 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. This was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The headaches returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with intense pain around one eye that persists for three hours.
About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “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 definitive identification came in 2002 at a national hospital.
Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for 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 recalls obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.
Ancient medical records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.
The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.
Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.
Official guidelines on management advise that patients are offered high-flow oxygen therapy 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 helps manage the attacks of well-known individuals.
But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
