Unbearable Agony: My Struggle With the Mysterious Pain of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.
The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort behind one eye that lasts up to three hours.
Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst 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 episode inside a facility.
Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.
It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.
The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession 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 calm advisor guided them through oxygen treatment and medication until the episode eased.
National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.
But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.
The national guidelines need updating to reflect a
