Unbearable Suffering: My Battle With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.
This condition often start with intense discomfort behind one eye that persists up to three hours.
Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of long symptom-free periods.
What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several 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 episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Ancient medical records propose bizarre treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode eased.
Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
