Excruciating Pain: A Personal Fight With the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with severe pain around one eye that lasts up to several hours.
About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with sudden, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.
What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.
The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains slow. Jamie Charteris's attacks began 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 eventually being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.
But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.
The national guidelines need updating to reflect a
