Full-Blown Pain: My Battle With the Enigmatic Suffering of Cluster Headaches
It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.
The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe discomfort behind one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.
What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.
One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Still, the inability to plan daily activities around unpredictable attacks 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.
Ancient medical texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in treating the disorder explain this.
In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
Despite such advances, identification remains delayed. 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 underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.
Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some people.
But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.
The official guidelines need updating to reflect a
